Jacob's uveitis and JRA Journey

eye update 2/1/2012

2012-02-03T12:31:00.002-05:00

January 22, 2008 is when this uveitis journey began. Four years later it is still an unwavering worry. Uveitis is a disease that affects only about 11,500 children in the United States. Even though it is extremely rare, it is the third leading cause of blindness in the developed world. Children with this are at risk for blindness and complications from glaucoma and cataracts. In simple terms, uveitis is inflammation inside the eye. Left untreated it can damage vision rapidly. When Jacob was diagnosed with uveitis four years ago it was a complete shock. I had heard that because he has juvenile arthritis that he would be at risk. The uveitis was diagnosed four years after the diagnosis of juvenile arthritis was made. This been said, it is extremely important for children to be followed very closely, even years after the arthritis diagnosis. Uveitis can pop up very quickly and silently. Jacob had NO SYMPTOMS.

Since the diagnosis of uveitis we have been going to see Dr. Foster who is in Cambridge. If you are unfamiliar with Dr. Foster you can read up on him at www.uveitis.org . This site has a wealth of information. Jacob's eyes have remained clear of inflammation since about June of 2008. His uveitis has been controlled with Humira. Just this week we went for the visit and all continues to be well. Jacob's eyes are free of cells. He has not escaped this disease without damage though. He has small cataracts that formed as a result of the uveitis and steroid drops that were used to treat the inflammation. Jacob fortunately used the drops for a few short months. We are extremely lucky that he was treated aggressively and his vision has been preserved. He has started to notice that glare is a problem for him. He says that when he looks at lights he sees a jagged halo around them. This is caused from the cataracts. The cataracts are mild, in a sense, and do not need to be removed at this point. At this appointment I was curious to see when we could let our guard down considering he has been doing so well. Dr. Foster said that 7 years free of inflammation (which will be in 3 more years!) and we will talk about moving his appointments further apart. So for now we continue every 3-4 months in Cambridge.

Happy New year! Finally an update!

2012-01-05T17:58:00.002-05:00

I figured with a New Year it would be a good time to give an update. Jacob just had a birthday last week. He is now 13! A teenager! I can't believe how quickly he is growing up. He is getting so tall too! I am happy to say his arthritis has been doing well. He hasn't complained much at all in the last few months. I think maybe it was around Halloween he had some ankle pain, but that was short lived. Today he had his 3 month follow-up with his rheumatologist. The doctor we see we really love! She is so kind and I just love how she interacts with Jake. She understands his personality well and knows exactly how to talk to him. This is huge for us. Overall she said she is giving Jacob an A today. His joints are doing great. The only issue, which has been an issue for quite some time is his left hip. It is significantly tighter than the other side. Jacob has zero pain from this even when the hip is manipulated. She said it will only be a concern if it does start to cause him pain. The only other findings were his left knee and leg are overgrown from the active arthritis in the past. It is still not corrected itself. I thought the leg lengths were a little more off than the last visit. His left calf muscle is about 1 1/2 inches smaller than his right. The other issue that we have been following is his scoliosis. The rheum felt as though it has worsened. He has grown almost 3 inches in the last 3 months so with this growth spurt it is possible. Jacob will see the orthopedic in April and he may get a shoe lift at that point. He is also being followed by a nephrologist for another issue that seems to not be going away.
I do think the appointment went relatively well. I had a talk with the doctor today about how Jacob has had arthritis for 8 years now. When she was pointing out the issues to me today she mentioned how he has had arthritis for a long time. To hear that out loud I have to admit kind of startled me. You know to look at your 13 year old child and accept he has these "issues" from having arthritis "for so long" it kind of hits hard. He has many more years to live and if he has permanent issues already, what will the future bring? We continue to pray that a cure will be found.

Hip MRI results

2011-07-22T21:10:00.003-04:00

Jacob's pediatric rheumatologist emailed me today to let me know that

Arthritis is in BOTH of Jacob's hips. The right is worse than the left.

This MRI was ordered a few weeks ago because when he had his 3 month visit with the rheum

she could feel there was stiffness in his hips. Three months prior to this she had noticed the same.

She said it was time to do an MRI to see what is going on in there.

Jacob in not having any pain what-so -ever with his hips. That is a good thing!! He is having

continuous pain in his heels though. After emailing the rheum back and forth, she decided

to have him do Humira weekly. I asked her if adding back in MTX would be an option, but she

wants to give the Humira weekly for now. If he continues to have pain and troubles we will

have no other option than to go with the MTX again.

Jacob is not happy about the shot being weekly. He has not been doing well with the 40 mg dosage. It is extremely painful for him now.

I am trying to make sense off this all. I don't know why I feel so surprised when something pops up again and again. Each time things seem to get quiet it's like you let your guard down then BAM! It's back. Now with this hip involvement I feel more fear for his future. This disease isn't going anywhere. We are 7 years in and there is no end in sight. A lot of emotions are running through my head tonight. After a good nights rest, I will be ready to fight again.

Please pray for all the kids dealing with this disease. As Jacob said tonight "I am sick of this stupid arthritis".

New update

2011-07-16T18:32:00.003-04:00

Since I last posted Jacob has had a rheumatology appointment and an eye appointment.

The eye appointment was just this past week. I am very happy to report his eyes are still clear.

They have been clear for 3 years now! (he has a few trace cells once in the past year)

His pressure was great and there was no change in his cataracts! We do not have to return for 3 months! This is the longest we have gone between visits since his uveitis diagnosis 3 1/2 years ago.

Jacob went to the rheumatologist a couple of weeks ago. He has been still having tons of heel pain. I told the doctor that I have noticed he has changed the way he walks because of the heel pain. His thigh on the side of the heel trouble is smaller than the other side. This is happening because he has changed the way he walks! So obviously it has been bothering him more than he has let on. While we were at the JA conference both of his heels were bothering him a lot. He had such a difficult time walking around seeing the sights. I was able to get him a wheelchair while we were in the Museum. He continues to have the pain pretty bad right now. He is back on Naprosyn 500mg twice a day.

The rheumatologist also found that he is getting stiffness in his left hip still. This was noticed a few months ago and she decided it is time to have an MRI to see what's going on in there. That is scheduled next week.

JA Conference 2011

2011-07-16T18:15:00.007-04:00

Last week we attended the Juvenile Arthritis Conference in DC. We had such an amazing time!

Even though Jacob has had JA for the past 8 years, this was the first conference we were able to attend! What an awesome experience for my whole family. I was able to meet up with so many of the moms that I have been talking to online for the past few years! To meet them in person after all this time was wonderful! I can't even explain the bond we had with each other. We had never met before, but yet felt like we have known each other forever! To be with others who are going through the same experience was so great! To see our kids play together was priceless! I am hoping to be able to make this a year long tradition. Next year the conference is in Indianapolis.

Conference time!!

2011-06-15T11:21:00.004-04:00

The Juvenile Arthritis conference is coming in a few weeks!! We are beyond excited to go!

We learned yesterday that we will be receiving a generous scholarship from our local Arthritis Foundation! This makes our trip so much more manageable. The boys are very excited about going. I am so very grateful for the opportunity to learn more about my son's condition. Jacob has been battling JIA since the age of 5. This will be our first conference. We are planning to meet up with a few other families that we have met online through this journey. It is going to be great to be able to put a face to those moms that I have spoken to online for so long.

My boys and I have not taken a vacation for some time. We are taking advantage of the destination to be able to tour our capital. We planned on a couple of days around the conference to sight see. I am looking forward to showing the boys part of our nations history. The White House, the monuments, the Vietnam wall, Arlington Cemetery are a few of the places I would like to see!

Thank you again to the Arthritis Foundation for this awesome opportunity!

Eye appointment

2011-05-11T13:32:00.004-04:00

Overall the eye appointment went well. There were no cells present.

There was a little panic though when they were saying that there was

a change in his vision. When the tech checked his vision in the beginning of

the appointment, she came up with 20/40. His vision corrected is usually 20/25.

She said that his cataract has grown some in his left eye. It was graded at a trace initially and it is

now at 1+ to 2+in his left eye. His right eye is just a trace.

When the doctor came in he wanted to know the last time his eyes were refracted and what his vision was. They called over to our local doctor and got his prescription and vision corrected.

Then we went back into the exam room and Jacob was retested with their lens and then with his glasses. He read at 20/25 again. The screen in the first room was a mirror where he had to read. The second room was a computer. The tech said the glare could of affected him in the first room.

I was stressing that the vision change was from the increasing cataract and that he would need to have something done. I was very glad when it turned out to be okay!!

Jacob seemed to be a little nervous when they were trying to figure out why.

The only other thing today is that his pressure was up a little again in his left eye. He was at 21. The right eye was at 13.

We also just got the refill on the Humira. The rheumatologist upped his dose from 20mg every other week to 40mg to keep up with his growth. He has been having some breakthough joint issues so hopefully this will stop that.

Heel Pain

2011-04-10T14:12:00.006-04:00

Jacob has been having heel pain for the last month or so.(maybe longer I lost track of time!) We went in to see the rheumatologist a couple of weeks ago for it. When we went in to see her, his heel pain was on a good day. I had went out and bought him some new sneakers hoping that they would help the pain. He told the doctor that it felt much better. She didn't see any problems. We left with a prescription for Naprosyn to take as needed. For the past 2 weeks he doesn't seem to be getting any better. He actually woke yesterday hardly able to walk. I hadn't filled the NSAID yet, so I went and got it for him. He woke again today, came down the stairs very stiff and hurting. It is a beautiful day out today so I took the boys out for a walk at a State Park. I knew Jacob would probably have trouble but we went anyway. I was right. He was limping and in pain. The other boys wanted to go for a longer walk but Jacob just wanted to leave. He pushed through for a little while, then we turned around and left. I don't know what is going on. I am going to try the NSAID regularly and hope that it takes care of the pain/inflammation. The rheumatologist told me if this continues, you have the option of doing the Humira weekly, instead of every 2 weeks. We might be headed that way. It doesn't make any sense that he can't even walk any distance at all without being in pain.

Awareness Video

2011-03-30T18:37:00.002-04:00

http://www.youtube.com/watch?v=98i1bgueDkE

Jacob's Journey on Video
To hear the song, you have to scroll down and pause the song on here.

Uveitis: STAY AWAY AND DONT COME BACK AGAIN

2011-03-09T13:04:00.003-05:00

Jacob had his 2 month eye check today. His eyes remain clear!! All looked great today. Pressures were great also. I think he has been off drops now for 3 YEARS!! The Humira is
working well. He is still completely off methotrexate. Jacob did complain of his knee hurting when he got home from school yesterday. When I just asked him how he is feeling this afternoon he said he is fine and "resting his knee". He insists it is fine, but he wants to rest it. hmm When he does complain of pain, I know it must be bad. I think he has a very high pain tolerence. I suppose it's a good thing, it doesn't slow him down often.

The pic is of Jacob and his younger brother, who wanted to come along today. After the ride in traffic to Boston today he said he will go to school next time. haha

Praying all of our kids are feeling well today!

A day in the life of a chronic illness. The chronic part, I forget once in a while.

2011-02-07T19:41:00.006-05:00

Jacob had appointments today in Boston with the orthopedic and the rheumatologist. He still continues to see the rheumatologist every 3 months and the orthopedic every 6 months.

We went in today thinking it was going to be just a routine appointment. Jacob has been feeling good at home and has not really complained about anything. Everything seemed to be holding steady. When we see the rheumatologist and the orthopedic it is so convienient. They share the same spot in the hospital. We arrived there and went immediately to xray for xrays of his leg lengths and his spine. After the films we went right in to see the rheum. The nurse took the usual vital signs and we talked about CARRA. We were able to finally sign up for the registry.
There has been talk for years about setting up a registry that will allow for a group of kids to be followed for research for treatment and a cure for this disease. We are happy to be part of this!
If any of you have not been approached by your child's rheumatologist please ask about this!

When the rheumatologist came in she asked Jacob how he was feeling any pain, problems stiffness etc. Jacob is quite the character answering her. He always brings a laugh. He denied any problems. So she looked over his joints. She found something new today. Yup new. Haven't had any issues with this joint yet. His left hip. It was stiff. She also noted that the toes which have been swollen for quite sometime, were still swollen. Jacob continued to deny any trouble with the joint. She decided to start with an xray to rule out bone changes here. So off we went to xray again. I think he has had enough radiation for a while now.

After the xray we went in to see the orthopedic. The xrays that were taken of his spine and leg lengths have remained stable. He still has scoliosis but it is still within an acceptable range. His leg lengths were about 7mm off. ( I think) So very minimal. Next we moved on to the hip. (the new joint, in case I didn't mention that) He was able to feel the tightness and said we may want to consider doing a joint injection. He looked at his toes as well and I asked about how the 2 toes do not bend much at all. He said he could feel the "nodules". He was concerned that the arthritis was active again. He left the room and consulted with the rheumatologist again. When he left the room Jacob was very upset. He kind of put his head down and quietly cried. He remembers all too well being put to sleep for these procedures. He wanted no part of it again. I think now that he is getting older this is tougher for me as well. He understands everything going on. He knew that hearing the arthritis was active again was not good. The doctor came back in the room and said that they discussed what to do at this point and they both agreed to leave the hip alone. Jacob is not in any pain, and he doesn't seem to be affected by it.

We return to the rheumatologist in 3 months. The chronic disease is still insisting on being chronic. Maybe one day it will decide to stay away.

Spreading awareness!!

2011-02-05T12:29:00.002-05:00

One of the biggest concerns, we as parents have regarding Juvenile Arthritis and Uveitis is the lack of awareness. For a disease that affects more than 300,000 kids, not to many people have heard of it. We are always looking to spread awareness. I was just on Dr. Foster's site and came across someone spreading awareness. Jay Jay French from the band Twisted Sister is raising awareness. His daughter at 6 years old was diagnosed with uveitis. She has traveled the road like a lot of our kids. You can read about Jay Jay's mission and fundraising to support this cause. His project is called The Pinkburst Project. Click on it and see what he has planned! Go Jay Jay spread awareness.

Are you going?

2011-01-09T08:12:00.002-05:00

We are hoping to go this year! Are you going? It would be a great opportunity to meet some other JRA families as well as see DC with the boys.

3 years since uveitis diagnosis

2011-01-05T14:19:00.004-05:00

It has been 3 years since Jacob was diagnosed with uveitis. I can't believe that long has gone by!
We have been continuing to see Dr. Foster every 8 weeks. We have clocked quite a few miles back and forth to Cambridge. These visits are very emotionally draining for me. Jacob on the other hand looks forward to a day out of school. Every visit that we go to I feel as though I am as nervous as the last. I can't even imagine what it will feel like if we ever hear the word "flare" again. I think the longer we have gone without cells the more nerve wracking it gets. It is even more worrisome with the med tapering. We have been still continuing to wean off of Methotrexate. He is down to only 5 mgs tonight. In two weeks he will take his last pill of it. I can remember when we were told he needed to go on this drug. It was scary to say the least. Methotrexate is a chemotherapy drug. I was very familiar with chemotherapy with my father having been through cancer, I was fearing the worst with the side effects. The doses used for arthritis are far lower than those used for cancer. Side effects such as nausea, vomiting, hair loss, mouth sores, liver dysfunction and lowered immune-system are possibilities even so. Jacob generally did well with the methotrexate. Initially he had awful mouth sores. The doctor quickly switched from folic acid to Leucovorin to help combat the side effect. We have also been doing blood work routinely, every 1-2 months, to watch his liver for an problems. The blood work has been a pain, but a comfort knowing that if this med was doing anything it would show immediately. Anyway, it will be a blessing to be able to stop this med sooner rather than later.

The appointment today went very well! The fellow we saw today was great! He was so thorough in his exam. He dilated Jacob's eyes today to be able to see in the back of his eyes. He did this because Jacob said that he has been seeing floaters. All was clear in the back of his eyes as well as the front. His pressures were good today also. The right eye was 21, the left 17. His vision was 20/25 both eyes.

February will be his rheumatology visit. Hopefully his joints continue to do well and don't need these meds too long either! I don't think there is any plan to start weaning the Humira too soon though.

Thinking and praying for all of our JRA and uveitis kiddos. Hoping for a healthy year for all.

2011-01-01T11:49:00.002-05:00

The blog list is growing! It is great that there are so many people out there willing to put their child's story out there. Take the time to click on the stories. Juvenile arthritis is very real. There are so many children fighting this awful disease. Awareness, Awareness, Awareness!!! Spread the word!

rheumatology appointment

2010-11-04T18:16:00.002-04:00

Jacob went for his 3 month follow-up today. He is doing great! All of his joints are doing well.
Three months ago, we had decreased his methotrexate by doing it every other week instead of weekly.

Jacob is currently taking 17.5 mg, which is the equivelant of 7 pills. Starting this Sunday we are reducing the dose by 1 pill. Which is 2.5mgs. He should be completely off, if all stays well, by the end of January.

January of 2008 is when he had come out of a remission. I can't believe three years has gone by!

He is going to continue on the Humira. Which he takes every other week. We are to watch for any flaring as the med is decreased and return in 3 months.

Eye check. Humira every 2 weeks, Methotrexate every 2 weeks. Holding steady!

2010-10-27T19:18:00.004-04:00

After driving through some crazy traffic this morning, and waiting to see Dr. Foster for 2 1/2 hours, the report is good! Jacob's eyes are clear, cell free! They have been clear now for 2 years, 4 months. (well one little trace cell count a few months back, but nothing to lose sleep over).

Cataracts have not grown.

Jacob sees the rheumatologist next week. We will find out if she will decrease meds further.

It is her call at this point. His joints seem to be doing well. He definitely does not complain.

Stay tuned.

New linked blogs

2010-10-09T21:33:00.002-04:00

I have linked a few more JRA blogs to here. Go check them out!

Live Vaccinations

2010-10-06T12:43:00.003-04:00

I just got back from taking my youngest son to the pediatrician
for his routine physical. The question came up again wheter
or not to give him the MMR vaccination. The MMR is a
live vaccine. Live vaccines are contraindicated for Jacob
because he is immuno-compromised. Now Daniel is
not immuno-compromised, but he has close contact
with Jacob on a daily basis. When siblings receive
live vaccines they can be putting the other child at
risk of contracting the virus. The pedi and I decided that
it would be a good idea to continue to hold off of any
live vaccines for the other boys, while Jacob is on
the medications he takes for his JRA.

If you remember, last year ,the school was administering
the live Flu Mist. I was advised by Jacob's doctor to
keep Jacob home during the administrating of the
vaccine.

The risks may be small that Jacob can contract a virus
from his brothers getting live vaccines, but it is a risk
that I am not willing to take.

Breaking news!!

2010-09-30T12:59:00.001-04:00

We were on the schedule for September 28...then postponed.

We were on the schedule for September 29...then other bills required lengthy debate.

Finally, at 12:48AM on September 30, 2010, the Arthritis Prevention, Control and Cure Act passed in the United States House of Representatives without objection. Only ten minutes later did the House close up shop until November 15th. A big thanks to all Arthritis E-Advocates, Arthritis Ambassadors and Representative Anna Eshoo (D-CA) who shepherded this bill through the House. We've come a long way!

	H.R. 1210 Introduce by Rep. Anna Eshoo	February 26, 2009
	Sent to House Energy & Commerce Subcommittee on Health	March 2, 2009
	Hearing in House Energy and Commerce Subcommittee on Health	September 15, 2010
	Amended at mark-up by House Energy & Commerce Committee	September 23, 2010
	Passed by the U.S. House of Representatives	September 30, 2010
	Passed by the U.S. Senate
	Signed into law by the President

It's on to the Senate and now, more than ever, we need your support. When Congress returns in November we will have only a short period of time to get the bill out of the Senate Health, Education, Labor and Pensions Committee and onto the Senate floor for a vote. Please take a moment to write your Senators and request their support for the passage of the Arthritis Act.

6th grade!

2010-09-04T07:45:00.004-04:00

I can't believe it is time for another school year. The summer went by so quickly!

Jacob started 6th grade a few days ago. He is growing up fast! If you remember last year Jacob

wasn't able to start school on time due to his tonsillectomy on the first day of school! I am happy to say he is starting school off healthy this year. This is a picture of him and Daniel on their first day. Daniel is in 1st grade this year! Andrew was long gone by this time, to his 1st year of high school!

1st eye appointment with the tapering of MTX

2010-08-29T13:55:00.003-04:00

Last week Jacob went in for his 8 week appointment to Dr. Foster. Daniel came along for the appointment today. The appointment was quick thankfully! You never know if you are going to be there for 1 hour or 4! I am happy to say his eyes still remain clear! After his last eye appointment we have reduced the methotrexate to every other week instead of weekly. So essentially, he has missed 4 doses of methotrexate in the last 2 months. Jacob still remains on the Humira every other week as well. Eight weeks until the next appointment.

Time to taper off methotrexate!!

2010-07-21T12:19:00.006-04:00

We went into Boston this week for Jacob's 3 month rheumatology appointment. Jacob continues to do very well. All of his joints look great! He is still having a little bit of stiffness in his 2nd toes on both feet. They do not bend as well as they should. The doctor said that those toes may stay that way. They do not bother him at all. We have decided to try to wean down on Jacob's methotrexate dose and see how he does. Rather than reduce the number of pills he takes, we are going to give the med every other week. Jacob has missed quite a few doses of meds in the past, and had no flare as a result. So hopefully this should keep things stable. We will continue this schedule until we see her again in September.

During this visit we also saw Jacob's orthopaedic doctor. He is still being followed for the leg length discrepancy as well as the scoliosis. Every six months his back and legs are xrayed to see how his growth has affected this. He is remaining stable.

2 year mark for Uveitis remission

2010-06-30T11:47:00.003-04:00

Jacob had his 6 week follow-up with Dr. Foster today. This visit marked the 2 year medicated remission for Jacob's uveitis. His eyes are completely clear!

Two years ago, Jacob was in the midst of a uveitis flare-up that was uncontrolled. He had been
treated initially with NSAIDS that produced no results. He then moved onto Methotrexate, a chemotherapy drug. This produced no results either. During the Methotrexate and NSAID therapy he was also on steroid drops. Jacob was unable to achieve a steroid free remission with this medication combo. His eyes continued to flare as we tried to wean the drops. The decision
was made to add to the Methotrexate another drug called Humira. Humira is a drug that is classified as a TNF antagonist. This stands for Tumor Necrosis Factor. Once the Humira was added Jacob went into remission. We were told 2 years ago, that once he achieved remission that
he would continue to be on this combination for a full 2 years before weaning would be considered. I remember thinking 2 years was so long!! Now here we are! Full 2 years off steroids.

As far as his eyes are concerned we have the go ahead to wean on the meds. This needs to be determined by the rheumatologist though. We are scheduled to see her on July 19th. Jacob's joints have been doing very well except for the one swollen toe. One toe. So now we wait for the appointment in July to see what she says.

We have graduated to seeing the eye doctor every eight weeks instead of every six. Uveitis is a disease that isn't to be taken lightly. It can come back at any time. The effects can be devastating. Jacob is very fortunate that his eyes have been very responsive to treatment. We shouldn't forget that still today, 10% of children will go blind from the disease. This is improved from fifty years ago when 50% of the children went blind. Proper care and diagnosis is so critical in preserving sight with this disease.

swollen toe

2010-06-05T20:07:00.002-04:00

I took this picture of Jacob's toe two weeks ago. The last time we were at the rheumatologist she said that there was inflammation in his 2nd toe. The toe seems really stiff and it won't bend. I sent an email to his rheumatologist with this pic and we are going to wait until his July appointment to check him. The toe doesn't bother him at all.

Juvenile Arthritis Conference

2010-06-05T09:37:00.003-04:00

The Juvenile Arthritis Conference is the Arthritis Foundation’s signature, nationwide event for families affected by juvenile arthritis. Join us for this three-day education event that focuses on health, wellness and fun for children affected by arthritis, lupus, myositis, ankylosing spondylitis and other rheumatic diseases. The whole family is invited! Specific educational 2010 tracks focus on issues relating to parents, teens/young adults, children affected by arthritis and their siblings. The Juvenile Arthritis Conference offers a chance to meet other families going through similar challenges, share stories, learn new techniques for managing juvenile arthritis and have fun!

I just wanted to post this on my website, for all who may be interested. The yearly conference is coming up this summer. More info can be found at http://www.arthritis.org/2010-ja-conference.php . I would of loved to go this year, especially considering it is not too far away! I am unable to go though. It seems like it would be a great experience to learn more about JA as well as meet other families going through this.

EYE'S ARE CLEAR

2010-04-28T16:01:00.003-04:00

All is looking good! We return in 6 weeks. If all is still clear then we can start to wean Jacob off of methotrexate. This June will be the 2 year mark of him being "cell free".

long time for an update

2010-04-25T18:24:00.002-04:00

I really need to update my winter theme on this blog. I will hopefully get to do that soon!

Jacob has been doing pretty well. Not too much has changed. We still continue to see the pediatric rheumatologist every 3 months and the eye doctor every 6 weeks. We saw the rheumatologist last week. She said overall he is doing great. She did say though that his toes looked a little swollen. I had noticed his toes red off/on but didn't think too much of it. She did say there was a little inflammation there. They are not bothering him at all though, which is a good thing. She said that we could maybe look into weaning him off the methotrexate if all stays calm, sometime this summer.

This coming Wednesday, Jacob has an appointment with the eye doctor. I am hoping for no surprises. This month we have had to delay the meds because he was put on antibiotics for an infection. He is late on both meds by a couple of weeks. The last time we had to miss meds he had a few cells in one of his eyes. They cleared right away once we started back meds.

I will update on Wednesday after the eye appointment.

Eye appointment

2010-01-31T08:10:00.002-05:00

This past week Jacob had his follow-up with Dr. Foster. His eyes are still free from inflammation.
This was such great news considering he was off his meds 3x in the last couple of months due to sickness. I guess this is hope that once we start weaning him off his meds this summer his eyes will hold. Jacob has definitely gotten used to going so frequently to the eye doctor. I and him, used to dread the appointments so much. He was so anxious to have the glaucoma/pressure tests done. He used to fight it and get so upset. Don't get me wrong he doesn't love it, but he will agree to do it. The slit lamp exams used to be a little difficult too, he is a pro now! January 22, 2008 was the day he was diagnosed. He has come such a long way! Six more weeks for the follow-up.
*the picture is Jacob sitting outside the doctor's office in Cambridge.

Rheumatology and orthopedic appointment(and ANOTHER infection)

2010-01-04T16:34:00.002-05:00

Today Jacob had a rheumatology and orthopedic appointment.

Jacob has been really sick the last 5 days with a high fever. I took him to the pedi a couple of days ago and the doctor said he has some type of virus. His temp has been between 104-105 the last five days. He woke today again with a temp of 104.5. I decided to keep his appointments in Boston in the hopes that his rheumatologist would know what was going on.

His throat looked horrible again all white, he has some type of infection going on. The rheumatologist said all of his joints looked great. She ran a bunch of blood tests. I haven't heard any results yet. She did put him on Zithromax for 10 days though. So that means no JRA meds again until the antibiotic is finished.

The orthopedic did xrays of jake's legs and spine again. His leg bones were off about 6 cm?? I think. His spine scoliosis hasn't changed. He will just need a 6 month follow-up with him.

Once again, the fun of being immune suppressed.

Gabrielle's Vision

2009-11-29T10:05:00.003-05:00

http://www.youtube.com/watch?v=ZQbYCp8FRmY

Love this video, it says it all. Please view to have a better understanding of UVEITIS

There are 50-100,000 children in the United States with JRA , 10% of these children will develop UVEITIS.

5,000-10,000 kids have uveitis in the United States, and to this day, still 10% of these children will go blind.

We need to spread awareness of this Chronic disease. A cure must be found. We need to save our children's sight.

doctor visits are getting a little tiring

2009-11-28T09:32:00.004-05:00

Jacob was back at the doctor's yesterday. For what I think is a sinus infection that has been lingering. He had it a month ago when he was being treated for strep throat. The penicillin he was given then didn't help, and he progressively got worse. He is now on Augmentin and a nasal spray, which hopefully will finally clear it. I have noticed when he has been sick with somthing it seems to linger. I don't know if it is from the JRA meds or not. The Humira does say that it cause respiratory and sinus problems. So who knows. Jacob's rhematologist had told me a month ago that whenever he is on antibiotics he is to hold the JRA meds. Just a month ago we held them for almost two weeks for strep throat. Now he is on Augmentin for 10 days. Off his meds again. I am very nervous that he has been off the meds so much lately. It is a scary thought that this can start a flare. Especially his eyes!
I sent his rheumatologist an email to be sure he should remain off the JRA meds for the next two weeks. Hopefully I will hear from her soon. I posted a few pics of the boys at the doctors. Always a fun time with 3 boys in the same small 6x6 room.

eye appointment

2009-11-08T14:49:00.003-05:00

I forgot to post the other day that Jacob had his eye appointment. We went this past Wednesday. What a long appointment! We left for Cambridge at 8:30, got there for a 9:45 appointment and were not seen until almost 1:00! The wait was a little excessive I would have to say! Thankfully Jacob did well with the appointment. His eyes are still clear. He has been off his meds again for a little while because he was sick with a fever and diagnosed with strep. Anytime he is on antibiotics were are told to have him stop his JRA meds. When he first started getting sick, I think he may of started to flare his arthritis. His knees were extremely stiff. Now that the strep throat is gone he is feeling better.

We return in six weeks again for his follow up.

Rheumatology appointment

2009-10-09T13:27:00.002-04:00

Jacob saw the rheumatologist yesterday, nothing really new to update! He continues to do very well. The doctor said that all his joints looked great! So right now we are holding steady. Keeping on the same medication schedule. If it wasn't for the uveitis we would be looking at medication weaning in January. Jacob's eye doctor insists we keep with the same medication for 2 years. Two years will not been until July.

eye appointment

2009-09-16T13:04:00.003-04:00

Big week this week. Jacob started 5th grade. He was finally able to begin school this past Monday. He is going to a new school this year. He was very nervous to start, especially because he was starting late because of his surgery. Speaking of surgery, he is doing well, finally! It was a very rough week and a half. He was in a lot of pain. He is healing well now and almost back to normal. As far as school goes, he really likes his new school.

We just came from Jacob's six week eye appointment. He is doing well. I was so nervous about this appointment because he has been off his meds for the last four weeks due to the surgery. He just restarted them within the last few days. There were no cells present!!! He does have traces of cataracts both eyes now though. His pressures today were 14 left eye and 19 on the right.

Follow up will be in another six weeks.

2009-09-06T11:14:00.003-04:00

Jacob is four days out from surgery. It has been a very rough last couple of days. He pretty much has been on the couch. To say he is in pain is an understatement. He has been in agony. I have been giving him tylenol every 4 hours. It is not helping much. Today he seems to be improving slightly. The tylenol seems to help for about 3 hours then he starts asking for medication. He is in better spirits today though. Last night he had had it with the pain. He is still eating minimally. I am trying to make sure he takes in fluids so he doesn't dehydrate. Not a very easy task! Hopefully his weight does not suffer.

As far as school goes, he is yet to start! He missed his first two days last week and will miss the week this week. Also soccer starts today, not for him though!

Surgery is over

2009-09-04T07:43:00.007-04:00

Update: The initial biopsy results came back as a tonsillitis. Nothing serious!! What a relief!

The surgery is over and we are home. Over all the surgery went very well. After everything Jacob has gone through, he is not a huge fan of being put to sleep. The surgery only took about a half hour. The doctor said that his tonsils were extremely large. A surprise he had found was that behind his right tonsil was a huge pocket of fluid. The doctor said that he must have had a really bad infection at some time.

Due to the rapid onset of his tonsillitis he is going to have a full biopsy. Tonsillitis is usually more of a chronic condition. We may hear the results today or it will be Tuesday because of the holiday.

While we were in the hospital Jacob's rheumatologist came in to see him also. He has been off his JRA meds since around August 12th. He still cannot go back on them until another week or so. They want to see him in a month.

Here are some pictures from his hospital stay:

before surgery

In the hospital room

The 8th floor roof deck playground

in the playroom at the hospital

The view from the roof deck

Surgery update

2009-08-28T13:59:00.002-04:00

Jacob's surgery has now been moved up to September 2nd. The ENT in Boston ants to get this done because he is getting progressively worse. Unfortunately this is his first day of school! I am glad though that he is going to get this done sooner rather than later. The poor kid sounds awful. I am anxious to find out what is causing all of this. His tonsils will be biopsied and hopefully give us some answers on why this is happening. There are a number of things that can be causing this. We have ruled out mono and strep issues. Tomorrow he is having an EKG to be sure all is well for the anesthesia, and a chest xray to see if anything related shows up there.

surgery date

2009-08-26T13:53:00.002-04:00

I just heard from the hospital, surgery is scheduled for September 8th. I am glad Jacob will be able to go to the first two days of school. Then he will miss the next two weeks!!

I don't think we are going to go to the arthritis walk now due to this. This year with everything going on with him and life in general, I haven't been able to get going on the fundraising anyway. I feel terrible. Next year for sure we will have to make up for it. Right now we are going to concentrate on getting him healthy!

I will post after his surgery and let you all know how he is doing.

Thanks for your prayers for him.

Preparing for surgery..again

2009-08-24T20:22:00.002-04:00

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We were able to get into see the Pediatric ENT at Tufts Floating Hospital in Boston today. We got the news we were expecting to hear. Jacob needs surgery. He needs his tonsils out. I think this is definitely for the best now. He is not getting any better. His tonsils as well as his lymph nodes are swollen. Jacob also let the doctor look into his throat with a camera today and the doctor said he has some regrowth of his adenoids as well. Jacob had his adenoids removed when he was one. Lucky him, he gets to have them removed for a second time. The camera also shows that he has a deviated septum as well.

The surgery is going to be scheduled within the next couple of weeks, whenever we can get clearance from the rheumatologist for how long he needs to be off his immune suppressants. We have to be extra careful in doing this surgery on him because of the risks his meds bring. He will have to be admitted for the night at the hospital to be watched for bleeding.

We should know by Wednesday when the surgery will be. Next week school starts, bad timing! The doctor said he will have to be out of school for at least 10 days following the surgery. He will have to stay off his arthritis meds for a while after surgery too. I pray that this will not cause a flare up!

End of summer vacation

2009-08-20T18:17:00.003-04:00

How cute is he? Who can believe summer vacation is ending! The kids go back to school on September 2. Jacob will be going into 5th grade this year. He is going to a new school. He is getting pretty excited! I, am a little nervous for the change for him.

I know that we are very lucky Jacob's arthritis has been generally very mild. (If you forget the huge knee surgery he needed for the very advanced arthritis in his knee.) He has been well controlled in general now. I read a lot on the Juvenile arthritis message boards and I see many of the kids are not so lucky. There are kids who suffer daily with pain from this disease. I pray that Jacob keeps on responding to the medications and doesn't go down that route again. In case he does though, I want the school to be prepared. I want the school to be informed ahead of time so if something pops up they will understand his limitations.

Oh, a tonsil update: We are still waiting for a consult at the hospital in Boston. Jacob just finished a week of steroids and another 10 days of an antibiotic this past weekend. Guess what happened? Within a few days his tonsils swelled huge and he is struggling to eat and talk again! I am probably going to call the pedi tomorrow and have him seen to probably start him on another round of steroids. Ah yes September 17th can't come quick enough. Speaking of school issues, surgery in the first month of it might be a problem.

uveitis website

2009-08-15T09:15:00.002-04:00

http://gabriellesvision.org This is another great site for uveitis info. There is a section that has other children's stories. Jacob is listed in the section too! Check out the site.
Please watch the wonderful video too!

rheumatology appointment

2009-08-13T18:47:00.003-04:00

Today Jacob had his routine rheumatology appointment. I am happy to say all good reports today! His joints looked wonderful! Actually even better than usual because he has been on steroids for the past week for his tonsils. Almost every joint was perfect. His left knee still has a little limitation to it, but nothing to stress over. He feels great and looks great!!

While we were there today we discussed the ongoing tonsil issue. Jacob has been on the prednisone for the past week and also on Augmentin. His tonsils looked pretty good today. The meds seem to be helping. A few weeks ago when he was originally placed on Augmentin, he seemed to improve. Two days off of the antibiotic his tonsils were back to square one. I don' t know if the steroids maybe did the trick now or what. He will be off both meds in a few days so time will tell.

The rheumatologist would still like Jacob to be looked at by the ENT, at the hospital in Boston. He is scheduled there on September 17th. She feels as though we need to be sure if he really needs them out. He is a high risk for surgery due to him being immune suppressed. He would need to be off his arthritis meds for at least a few weeks during the surgery time. This would risk a flare up.

I also asked the doctor about the new warnings on the TNF inhibitors. The Humira specifically. The chances of malignancy from these meds is very minimal. The reality of it is that these drugs have been a miracle to say the least for so many kids. It is a risk but the benefit definitely outways the risk. The Humira is saving my son's vision. I think of what would of happened if it wasn't for this med. Uveitis is such a serious disease that still blinds people to this day.

As I said time will tell what is going to happen with his tonsils. For right now we will enjoy the last few weeks of summer vacation!

tonsils..

2009-08-07T19:27:00.002-04:00

Never a dull moment... For about the last month or so ago, I have noticed that Jacob has been sounding a little stuffy. His voice sounded a little different. Off and on , he had been having issues eating. He would choke occasionally on food. About two weeks ago he started to sound really bad. I looked into his throat and saw his tonsils were huge!! I called the pediatrician. His dad took him in the the pedi and the doctor was worried about his airway closing. HE was almost going to admit him into the hospital but the local ENT agreed to see him right away. The ENT decided to try to put Jacob on Augmentin for 10 days and have him back to recheck.

This past Wednesday I took him back for the recheck. Jacob still didn't sound very good. The ENT is thinking at this point it would be a good idea to have his tonsils removed. We decided it would be best if he was to go to Boston to have his surgery. The office tried to set up the consultation at the hospital but the PEDI ENT was on vacation until next Tuesday.

Tonight, Friday night, Jacob seems to have gotten worse. He was choking on even soft foods. I called the ENT back and he put him on Augmentin again and also prednisone. The doctor didn't think the pred would do much but it is worth a try because he is having so much trouble right now.

So we wait to hear back for a date for the consultation in Boston.

2009-08-02T13:45:00.005-04:00

Two weeks ago I received a call from Nesse, who works at the Massachusetts Arthritis foundation. She called us to let us know she had tickets to a Minor League baseball game. The team The Lowell Spinner's play close by to us. I took Andrew and Jacob to the game. We had such a great time! I thought for sure the game would be rained out because it was drizzling when we got there, but the weather cleared just in time! These are a few pictures from the game. Thanks again to Nesse at the Arthritis foundation for thinking of us!

Biologics | Biologic Response Modifiers | Arthritis Today Drug Guide

2009-07-28T21:54:00.001-04:00

Biologics | Biologic Response Modifiers | Arthritis Today Drug Guide

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Wow what a difference a year makes!

2009-07-23T21:40:00.003-04:00

These pics were taken about a year apart. Last year during Jacob's arthritis flare up he was losing weight like crazy. He lost maybe 10 pounds. I think he had went down to about 58 pds. This summer, flare free, he is up to about 75 pounds!! HE is feeling great and continues to do very well.

Bug bites part 2

2009-07-14T17:29:00.003-04:00

Jacob went back to the rheumatologist last Thursday, but I forgot to post about it! His mosquito bites were still not healed yet. They were looking better, but not gone. His lymphnodes were still pretty large. The doctor still didn't want to put him back on his arthritis meds yet. The plan is to continue the antibiotics for the remainder of the ten days, and to email her a picture of his knee this Thursday. The doctor wants to be sure his knee is free of any infection before restarting. The end of this week it will be three weeks since he has had the MTX and the Humira. We are risking a flare up in the hopes that his body can fight off the infection. The medications as you know are immune suppressants.

I will be very curious to see what his eye exam shows when we return there in a few weeks.

bugs bites and infection

2009-07-06T20:19:00.002-04:00

Today we had an appointment with Jacob's rheumatologist and Orthopedic. It was good timing because we had another issue come up over the weekend. About a week ago Jacob had got about 7 mosquito bites around his knee. They were really itchy throughout the week. By about Friday they started to look infected. Was this because of his immune supression? I decided to hold off on the his Methotrexate because they were starting to look really bad. By Saturday and Sunday the area around a couple of the bites got very red and hot. His entire knee seemed to be swollen. The rheumatologist thinks it is a staph infection. She put him on a antibiotic and wants me to watch it closely. He is not to get any of his meds until this clears. We want his immune system to fight off this infection. She wants to see him back on Thursday. Jacob is in a lot of pain tonight and was actually saying he feels like it is his arthritis. His knee is stiff. He was begging me to give him his shot. Being 10, he cannot understand why I am not giving him the medicine to help his arthritis. I am hoping we can restart the meds soon. Without them we are risking a flare.

We saw the orthopedic today for the 6 month follow-up of the scoliosis. Jacob had his back xrayed again. The curvature of his spine has increased by about 3 degrees the doctor said. He still thinks it is in a "acceptable" range. I have to say, when I saw the xray it looked like a HUGE curve!! We are to return in 6 months to rexray the spine. He is also going to xray his legs to check the leg length discrepancy also.

This picture I just took yesterday of his knees. You can see the bites. The redness is difficult to see at this angle. The left knee is the swollen one. You can't see any definition of his left knee cap.

6 week eye appointment

2009-06-24T15:53:00.004-04:00

Another uneventful visit to the uveitis specialist, Dr. Foster in Cambridge. Jacob's eyes still remain inflammation free. Jacob has been on the combination of 17.5 mgs, Methotrexate, (chemotherapy), and 20 mgs Humira, which is a bi-weekly injection. This combination has kept him cell free for an entire year now!!

His vision remains stable and his eye pressures are within a normal range. The pressure readings today were 15 and 16. Actually down from 24, last visit!! His cataract, which is still very small, is stable.

All in all a great visit today. Another 6 weeks for a follow-up. One year and counting to begin the weaning of meds!

Humira rash

2009-05-17T13:23:00.004-04:00

The last few injections of Humira that I have given Jacob, have been causing a reaction. After the shot the area swells like an egg immediately, and then a rash appears. The medication does state that swelling and a rash are common side effects. I am just wondering why now, when he wasn't getting one before.

Two different kids, from two different states: One rare disease

2009-05-08T06:35:00.005-04:00

Yesterday Jacob had a follow-up at Dr. Foster's. The appointment was all but routine for one special reason. Yesterday we met our blogging friends Amy and Jenna. Jenna is five years old and is fighting uveitis and Jra just like Jacob. Jenna and her mom come from Maine to see the same eye doctor that we see here in Massachusetts. We have both been seeing this doctor but had never had coordinating appointments. Amy and I have become friends online, as we have supported each other through our children's illnesses. It was great being able to meet them finally!!

Jacob's eye's continue to do well. There is no sign of inflammation. His cataract remains stable. The only change this visit is that his eye pressure in his left eye is 20. His right eye continues to be around 17.

I called about his blood work yesterday while there and all was normal but his sed rate has gone from zero to 28. The sed rate is a marker for inflammation in his body. For whatever reason it is up this time, I hope it goes down next month!

Please check out The web page of our friend Mia, who went in for cortisone injections and knee draining yesterday. Mia is in an awful flare up and hopefully will get some much needed relief from the procedure yesterday.

Please check out Jenna's and Mia's updates on their blogs. The links are on the left.

Rheumatology appointment

2009-04-27T18:10:00.002-04:00

We went to see the rheumatologist today on an emergency visit. We went in to check out Jacob's hip. He woke up slightly better today but still needed crutches to walk any distance. He had his hips and ankles xrayed. The doctor believes it is just a really bad strained muscle. The xray showed no arthritis present. Thank God!!

He had his ankles xrayed to check out the issue he had a few weeks ago with them. We have not got the results from those yet.

Tonight, he seems to be doing much better! Hopefully back to normal tomorrow!

no words needed

2009-04-26T11:39:00.000-04:00

school vacation extended

2009-04-26T09:55:00.003-04:00

Last day of school vacation. Jacob's will be extended. Over the last few days he has been complaining of his hip hurting. Earlier yesterday it was getting increasingly worse. By late afternoon he was barely walking, and on crutches. Last night was a really difficult night for him. He woke at 2AM in incredible pain. I gave him some naproxyn and put the heating pad on his hip. He cannot put any weight on his leg at all. I don't even know what is causing this. I paged the pedi rheumatologist today and she upped his naproxyn and is going to see him in the morning.

If he doesn't improve I don't know how he is going to do in school this week. He can't even lift his leg to do a step. His classroom is on the top floor of the school and there is no elevator.

Gene research

2009-04-19T06:57:00.000-04:00

4/16/2009, 6:53 p.m. EDT

Researchers at the University of Oklahoma Health Sciences Center announced
Thursday the discovery of the first genetic marker for juvenile arthritis,
which could ultimately lead to improvements in treatment for children with
the disease.

Dr. James Jarvis, who discovered the biomarker with a team of scientists at
the OU College of Medicine, said it can be used to predict whether a child's
arthritis is in remission. That is critical, Jarvis said, because many
children endure painful arthritic relapses when they stop taking medicine
too soon.

"These kids may lose months of their lives at a time, which can make a huge
difference in what happens to them," Jarvis said.

The team's research appears in the medical journal "Arthritis and
Rheumatism."

By identifying the biomarker, OU scientists now can move toward developing a
test for remission that would allow doctors to know when a child is ready to
stop taking medication, Jarvis said.

"We will be able to take a child as soon as he or she is diagnosed, do a
test and then say, 'You need these two medicines and not this one,'" Jarvis
said.

Jarvis said it could be as many as five years before a gene profile becomes
part of the standard care for juvenile arthritis patients.

© 2009 Associated Press. All Rights Reserved.

Not feeling so good..

2009-04-17T18:36:00.002-04:00

It has been a long week of illness. Jacob started with a cold last weekend and it is still here. Did I say still here? Oh still here and BAD! He missed two days of school this week, including today. When I thought he was getting better he got worse. I took him in for a strep test on Wednesday, thinking for sure it was strep. It wasn't. Just a virus. Today his lymph nodes are the size of apples! He has been living on ice cream and freeze pops. I don't know if he is having trouble fighting off the virus because of his medications. I am guessing having a suppressed immune system doesn't help! I called the pediatrician tonight to see what to do with the Methotrexate/chemo pills for tonight and the nurse spoke to the doctor and felt it was a good idea to skip them and let his body recover from the illness. Hopefully this won't affect his eyes or joints. This Wednesday is Humira night so I guess it will be good timing.

Happy Easter!!

2009-04-12T17:55:00.003-04:00

Okay I am a bad mom. No Easter pics this year!! I forgot to buy batteries for the camera! That is on my list. The boys did have a nice Easter. They are all sugared up for the week now. haha

I just wanted to update a little on Jake's ankle. He has been on the naproxyn for a few days now. It doesn't seem to be doing much. I also put in a gel insert in his shoe to see if it would help minimize the pain when he is walking. Or should I say running. Try to get him to rest up is nearly impossible. I just don't see how this is going to get better if he won't sit still. He played outside for quite awile this afternoon. He came in and asked for another "pill" because it hurts too much. He is limping like crazy. He has changes his entire gait again. Walking now on his toes. I can see it more when he is bare foot. Can you physical therapy in our future again?

Another thing... Anyone whose child is on Naproxyn or another anti-inflammatory med notice any mood changes? I don't know if you remembered but during last winter when Jacob was on Indocin his mood was awful!! I was not sure if it was the med or the flare itself. He seems to be getting moody and grouchy again. Maybe it is the pain? I don't know!!

Foot/ankle pain???

2009-04-09T06:18:00.004-04:00

Update:

Jacob did wake up this morning in a lot of pain. I called the rheumatologist to see if she was in the local office today and she was!! I dismissed Jacob from school this afternoon and took him in to check out his ankle. The doctor found his left Achilles tendon to be all inflammed. Tendonitis. She wondered if he had hurt It. I didn't remember anything causing it. So Jacob was put back on naproxyn for a few weeks as needed. Also, she said for him to put in a soft insert in his shoe to help with the pain. If after a few weeks it is still bothersome we have to go back to the doctor. I think sometimes this can be related to the JRA. Hopefully it is not and it will clear quickly!

This morning:

I don't know if I mentioned Jacob has been complaining of foot pain off and on. Yesterday morning he woke again limping and complaining of his heel hurting. He went off to school okay. When he got home from school he went outside to play and I could see he wasn't bending his ankle on his left while he was running. It was obvious he was trying not to move or step a certain way. When he came in from playing, he was limping really bad, and needed to soak in a hot tub. Last night was the Humira shot. I am hoping that him being due for the shot will make a difference. If not I may have to call the doctor to get in to see them sooner.

Eye appointment

2009-04-01T14:19:00.003-04:00

Uveitis and Cataracts

This is a complication of anterior uveitis, intermediate uveitis, posterior uveitis and panuveitis.

Cataracts are a common complication of uveitis. Cataracts are a clouding of the eye’s lens. In less developed countries, this can be one of the most common causes of vision loss. In industrialized nations, however, cataract surgery is a commonly performed procedure. There are few surgical complications and very few people go blind from the condition.

Eye doctors can remove the eye’s natural lens and replace it with a special plastic lens. However, if the cataracts are related to uveitis, eye doctors may not be able to perform surgery until the inflammation caused by uveitis is brought under control. In most cases, eye doctors want the eye to be free of inflammation for at least three months before performing cataract surgery. Sometimes, the artificial lens put in place by an eye doctor during cataract surgery can irritate the eye and cause anterior uveitis.

Long term use of corticosteroids used to treat uveitis can also increase the risk of developing cataracts. The type of cataract developed by long-term corticosteroid use causes the most visual disturbance. -prevent blindness America website

I have posted this regarding uveitis and cataracts because today we just found out that Jacob has since formed a cataract from his uveitis. We just came from Dr. Foster's office. I am frustrated and I guess in shock of the new diagnosis. I have known that cataracts are a complication of uveitis, but I had thought they would only form from prolonged use of steriod eye drops. I learned something new today. They can also be caused from the uveitis itself.

They cataract is in Jacob's left eye. The treatment plan for now is going to watch it. We are going to return in six weeks for a follow-up. His eyes still remain free of "cells".

The road that I thought were going to ride out easily, now has some bumps in it. The reality of the seriousness of this disease is once again brought to my attention.

Hard to soak in the fact that my 10 year old son has had arthritis so severe he needed surgery before his 10th birthday, and now has cataracts like his grandmother.

Rheumatologist appointment

2009-03-19T18:30:00.002-04:00

Today we saw Dr. Miller, Jacob's pediatric rheumatologist. I was very nervous today for the appointment, you know the other shoe dropping. I am still waiting for it even though it has yet to happen. It is funny how a having a child with a unpredictable disease like Juvenile Arthiritis can make you feel that way.

The appointment went very well today. Dr. Miller said she is very happy with how Jacob has been doing. She said there was no signs of inflammation today. I thought for sure his knees were swollen she said they were not. I am wondering if the weight gain he has had is making his knees look a little chubby. He has put on so much weight since this time last year. He is actually back on track on his growth curve.

The only issues we still seem to be having is the leg length discrepancy. He is still measuring one leg a little longer than the other. His thigh and his calf are still smaller on the surgery side. There is also slight contractions on both legs. This is completely from the way he is walking. While he was in the flare up last year he would compensate for the swollen knee by walking with the leg slightly bent. I can see he is still walking that way. Dr. Miller said it can be corrected with physical therapy if we wanted to go. I am going to pass on that for the moment. It is very minimal and if it gets worse then maybe was will pursue it.

All medications will stay the same. Methotrexate 17.5 mg. (chemotherapy) once a week, And Humira every other week. He remains free of side effects from both meds. We continue to have blood work every month to watch for any changes. The methotrexate has to be carefully monitored in case of any issues with his liver. So far so good!!

Just for the record..it has been a year this week since the knee synovectomy. Ahhh things in life have been so much calmer!!

Stay tuned for the eye update on April 1st!! Hopefully all is well there too!

Arthritis Advocacy- GO Mikayla!!

2009-03-18T11:21:00.002-04:00

Once again the importance of Arthritis Advocacy. Every voice can make a difference.

Mikayla's Testimony at the Congressional Hearing

March 18, 2009 testimony before the House Appropriations Committee, Subcommittee on Labor, Health and Human Services, and Education on behalf of the Arthritis Foundation

My name is Mikayla Minnig, and I live in Downey, California. I am here today on behalf of the nearly 300,000 kids like myself who have juvenile arthritis. I am 10 years old and in the 5th grade. I was diagnosed with pauciarticular juvenile rheumatoid arthritis when I was just 3 years old. Pauciarticular means it affects four or fewer joints and usually large joints. For me, it affects my left knee and ankle. I also am at high risk for eye inflammation and must have them checked often so I don’t become blind, which could happen. It all began when I felt a lot of pain and swelling in my neck. I couldn’t walk or run like the other kids, and I couldn’t turn my head.

For ten months I went to lots of different doctors to figure out what was wrong with me. Some of these doctors told my parents I must have bad growing pains or must be faking the pain and tears. Finally, we were sent to a pediatric rheumatologist—a doctor who treats kids like me with juvenile arthritis. Dr. Starr said I had arthritis. My parents were surprised. They didn’t know, like most people, that kids got arthritis. In fact, most people don’t know that juvenile arthritis is one of the most common childhood diseases in the United States.

People are surprised when I tell them that I have arthritis because I don’t look very different than other kids. But unlike other kids, I take a cancer drug every week plus daily medication to control my arthritis and it helps me try and lead a normal kid-life. I have met other kids through the Arthritis Foundation who are not as lucky as me. The drugs don’t work for them, and they end up in a wheelchair or have to have joints replaced. In fact, juvenile arthritis is the leading cause of disability in kids. I am also lucky to be able to see a doctor who understands and can treat my disease. Kids in 9 states don’t even have a single specialist to see them.

I am here today to ask Congress to focus more attention on kids like me with arthritis. Research is the key to a cure. Research has led to newer drugs that help kids stay out of wheelchairs, but these drugs can have really bad side effects. We need a cure! Right now, the government spends $9.8 million at N.I.H. for juvenile arthritis research. That sounds like a lot of money to me but when you think of the nearly 300,000 kids that works out to be just about $32 per child.

There is a group of pediatric rheumatologists that are working together to study and treat children with arthritis, but they need your help. With more funding and attention from Congress, more research studies can move forward to help find a cure. The Arthritis Foundation supports, at least, a doubling of juvenile arthritis research over the next few years. Also, the N.I.H. should spend more money training future doctors. Kids around the country are diagnosed too late to prevent damage – please help change this. I hope one day when I tell people I got arthritis at age 3, and they say “but kids don’t get arthritis’ I can tell them “you are right – not any more – because research has found a cure”.

Thank you for the opportunity to speak to you today.

Is a flare coming on?

2009-02-28T18:16:00.002-05:00

The picture on the left is from September of 2008. The other picture is from this week. I am starting to wonder if Jacob's knees are building fluid. It seems like both knees have swelling above them. Neither one is warm to the touch. I like to take pics to compare as time goes by. Jacob's next appointment with the rheumatologist is on March 19th. I am kind of anxious to see what he says.

Shot night!

2009-01-28T15:18:00.002-05:00

Every other Wednesday night is shot night. Parent's who's children are on this medication know very well that shot night is no fun! Humira is a very painful injection to give for him and me!

Although Jacob has the lidocaine to help numb the injection area, the medication itself burns terribly. I am amazed that he has come so far in his fear of getting the shot. Tonight he has asked me early to get the "shot over with". He is so brave! It helps keep me brave!

Very scary drive, but good news!

2009-01-28T12:25:00.002-05:00

We just got home from Dr. Foster's appointment. It is snowing heavily outside and the drive was a nightmare! I am glad we made it back safely!

The nice thing about braving the elements today was that Dr. Foster's office was very quiet. There must of been cancellations. We were out of there so quick today.

Jacob's eyes still remain quiet. It is six months of quiet. His eye pressures were 16 today in both eyes. Well within normal range! Jacob did great with the pressure test. He is finally comfortable with the procedure.

I finally remembered to ask Dr. Foster today if Jacob needed to take pre-medication antibiotics before dental work and he said it was a good idea. The medications he is on to fight his jra and uveitis are immune-suppressants, there for we need to be sure he doesn't contract a bacterial infection during dental treatment. The risk is small, but it is worth being cautious.

Pictures of Inside a JRA knee

2009-01-25T09:50:00.005-05:00

These pictures were taken during Jacob's knee synovectomy last March. You can see the excessive tissue growth. You can see the instrument they were using to clean all of the diseased tissue out. If you click on the pictures they will enlarge.

One year today

2009-01-23T18:03:00.002-05:00

Today, January 23, 2009 marks the one year anniversary of Jacob's diagnosis of Uveitis. I can't believe that it has been a year already! Where did the time go?

I can still remember the day so clearly. It had been a while since we had been to see the opthamologist. We went in there thinking it was going to be just a routine check-up. Why shouldn't it be. They have always been.

We got the surprise of a lifetime that day. A diagnosis of uveitis. When the doctor said that Jacob had uveitis I had no idea of the battle it would become.

Looking back over the last year, I have learned so much about the disease. A disease that no one has ever heard of. A disease that is so rare, that it is estimated that only 15 cases out of 100,000 people have it in our population. Jacob is now one of those statistics.

To this day there are still 10% of people with Uveitis going blind. I KNOW Jacob will not be in this statistic. We are so very lucky to be able to receive the care he has.

Last year this time, a journey had begun. Now we continue the journey with complete confidence that he will continue to fight this successfully. I pray the medication he is on will continue to "trick" his immune system and keep his eyes and joints quiet.

We see Dr. Foster next Wednesday. Please pray he is still doing well. It is always a surprise because this disease is so silent.

Skiing again!

2009-01-10T08:51:00.002-05:00

The side effects of a very suppressed immune system=a great time skiing!!

Orthopedic and Rheumatology appointment

2009-01-05T18:52:00.002-05:00

We had a very long day today! We left the house at 9:30am and got hime at 5:30!
We saw the orthopedic doctor, the Rheumatologist and he had xrays of his spine.

Rheumatology: Very good visit. The doctor noticed no swelling in any joints. His left knee still has some extra growth to it. Not too much of a concern at this point though. Jacob had been complaining off and on about his fingers still bothering him. The doctor said to just keep watch of them there was no visable swelling to them. We return in 3 months.

Orthopedic: Overall good visit. It is confirmed though that he has scoliosis. Just a mild form of it at this point. This could of been caused from the leg length issue. We were able to see the xray of his back and I thought his spine looked way off the doctor said it is just mild though. He said we still need to watch it very carefully. It may get worse as he grows. In that case he would need a back brace. I don't even want to think of that! As far as the knee goes, the doctor thought it looked pretty good. He said though by this point the synovium would of grown back. So we are just to keep watch on it. I asked him about why his knee still hurts when he does a lot of exercise on it. Like running a lot or walking up and down a hill after sledding, he said that it shouldn't be from the surgery. It has been too long out of surgery to still have pain from it. He said it is likely from the jra. As long as it isn't keeping him from doing things then leave be. Sad to think at his age he "suffers" the day after playing too hard.

Looking back an entire year ago we have come along way. It was this week last year he restarted the JRA. The week this journey began again. We are moving forward with high hopes that he will still beat this disease.

Next visit is with Dr. Foster at the end of the month. We return to the Rheumatologist in 3 months and the orthopedic in six months.

New Publication on study of Cancer risk from meds used to treat ocular inflammatory disease

2009-01-04T12:52:00.002-05:00

Long-term risk of malignancy among patients treated with immunosuppressive agents for ocular inflammation: a critical assessment of the evidence.

Kempen JH, Gangaputra S, Daniel E, Levy-Clarke GA, Nussenblatt RB, Rosenbaum JT, Suhler EB, Thorne JE, Foster CS, Jabs DA, Helzlsouer KJ.

Ocular Inflammation Service, Scheie Eye Institute, The University of Pennsylvania, Philadelphia, Pennsylvania 19104, USA. john.kempen@uphs.upenn.edu

PURPOSE: To critically assess potentially carcinogenic effects of immunosuppressive therapy in the ocular inflammation setting. DESIGN: Focused evidence assessment. METHODS: Relevant publications were identified by MEDLINE and EMBASE queries and reference list searches. RESULTS: Extrapolation from transplant, rheumatology, skin disease, and inflammatory bowel disease cohorts to the ocular inflammation setting suggest that: 1) alkylating agents increase hematologic malignancy risk and cyclophosphamide increases bladder cancer risk, but less so with < or ="18" color="#000099">tumor necrosis factor (TNF) inhibitors may accelerate diagnosis of cancer in the first six to 12 months, but probably do not increase long-term cancer risk; and 4) changes in risk with methotrexate, mycophenolate mofetil, and daclizumab appear negligible, although nontransplant data are limited for the latter agents. Immunosuppression in general may increase skin cancer risk in a sun exposure-dependent manner. CONCLUSION: Use of alkylating agents for a limited duration seems justifiable for severe, vision-threatening disease, but otherwise cancer risk may be a relevant constraint on use of this approach. Antimetabolites, daclizumab, TNF inhibitors, and calcineurin inhibitors probably do not increase cancer risk to a degree that outweighs the expected benefits of therapy. Monitoring for skin cancer may be useful for highly sun-exposed patients. Data from ocular inflammation patients are needed to confirm the conclusions made in this analysis by extrapolation.

PMID: 18579112 [PubMed - indexed for MEDLINE]

Jacob is 10!

2008-12-27T11:23:00.001-05:00

2008-12-27T09:35:00.004-05:00

Happy 10th Birthday to Jacob today!! Jacob was born at 5:22 AM on December 27, 1998! He surprised us by coming almost 3 weeks early. It was a good thing, because he weighed 7pds
10 oz's.

Christmas

2008-12-25T21:22:00.003-05:00

Merry Christmas to everyone! I can't believe Christmas has come and just about left already! We had a wonderful day today! The boys are enjoying all of their gifts! The are especially loving the Wii. I am amazed at the workout the kids are getting playing! I would highly recommend it for the kids out there with arthritis. I think Jacob is moving every joint in his body! It is great for keeping the kids mobile!
I hope everyone had a nice Christmas. God Bless!

Fun in the snow!

2008-12-19T19:56:00.003-05:00

ABC News: Juvenile Arthritis Teens Less Physically Active

2008-12-06T15:09:00.002-05:00

I don't think this will ever affect Jacob, but I thought it was interesting!

ABC News: Juvenile Arthritis Teens Less Physically Active

Posted using ShareThis

Eye update

2008-12-04T19:31:00.002-05:00

I am a day late on posting the good news!! Jacob had his appointment with Dr. Foster yesterday. His eyes remain clear! Dr. Foster said that Jacob is a success case. His eyes are free of cataracts and no glaucoma present (he was able to do the pressure test and the numbers were very low). The Humira, along with the methotrexate, are still doing the job! So we remain on the 8 week follow-up.

After the long day going to the appointment yesterday it was also shot day! Jacob was not happy about it last night. He has been doing well with the shots but last night he had other ideas! He fought me to just put the numbing cream on. And it took another hour to get him to sit and let me do the shot. He screamed for a half hour after the shot too. So last night both of us slept very well after the stressful day! I can't believe we still have 2 more years of these battles. Hopefully he can learn to do the shot himself before he turns my hair gray! It is no fun!

Christmas tree

2008-11-29T17:25:00.002-05:00

The "other shoe"

2008-11-28T08:10:00.004-05:00

Some of the other moms on my online support group were taking about "waiting for the other shoe to drop". Why do all of us mom's (or Dad's) who have kids with arthritis feel that way? We are afraid to let our guard down. Back in 2004 when Jacob started with arthritis I didn't know much about it. I didn't have the Internet to go crazy looking up everything. Was that a good thing? Possibly. Because if the unknown back then I eventually did let my guard down and let this disease leave my head. When his joints went into remission, the only time I gave it a thought was at the 6 month doctor appointments. At the opthamologist and the rheumatolgist we always got things look great. Then we were on an 18mo follow-up with the Rheumatologist I believed it was over! I NEVER gave it any thought during that follow-up period.

The "other shoe dropping" in January of 2008 changed my way of thinking. The shoe fell and fell hard! I feel like I am on my guard again and watch for every little ache, skip, stiffness, and just plain old crankiness with him. I worry more when he is sick that things will flare. I just got the rest of his blood work from the rheumatologist on Wednesday and she assured me it is fine. The C-reactive protein which is an indicator of inflammation came back different this time than the last few months. He had been reading <.1 and now it is 1.2. This can simply be from him being sick and it is still reading very low. But it is change. Getting bloodwork every four weeks we are able to follow his progress thoroughly. We do the blood work on a monthly basis to monitor the side effects of the Methotrexate. This medication is a Godsend, but the side effects can be extremely dangerous if not monitored properly.

So for now, I am trying not to wait for the "other shoe" to drop but I am being on the cautious side. Which I think is reasonable. We have Jacob's appointment with Dr. Foster on Wednesday. When he looks at us and says "all clear" and usually follows it with "congratulations", I will let the shoe rest until January when we see the Rheumatologist, I promise!

Arthritis Bill update

2008-11-27T19:00:00.002-05:00

This was just posted on the www.arthritis.org website:

We can't give up hope that this bill will eventually pass!

What happened during the lame duck session?
As the 110th Congress winds down, we wanted to provide an update on the status of the Arthritis Prevention, Control and Cure Act (H.R. 1283). There was no Senate consideration of the bill during the November “lame duck” session. It is possible that Congress will meet again in December given the current economic conditions, so we will continue working to find any opportunity to make headway. At the same time, we are beginning to look ahead to the New Year with a new Congress and a new Administration. Your past efforts at reaching out to your Members of Congress have not gone unnoticed as evidenced by the unanimous House passage of the Arthritis Act in late September. The Arthritis Foundation will be calling upon all its advocates again to continue the momentum and push the Act through both the House and Senate next year.

2008-11-26T06:20:00.004-05:00

I just wanted to share this Thanksgiving poem:

Thanksgiving Delights

On Thanksgiving Day we’re thankful for
Our blessings all year through,
For family we dearly love,
For good friends, old and new.

For sun to light and warm our days,
For stars that glow at night,
For trees of green and skies of blue,
And puffy clouds of white.

We’re grateful for our eyes that see
The beauty all around,
For arms to hug, and legs to walk,
And ears to hear each sound.

The list of all we’re grateful for
Would fill a great big book;
Our thankful hearts find new delights
Everywhere we look!
-author unknown

I read this poem and thought it was so fitting to my life right now. This has been a difficult year for us. With all of the stresses of Jacob's illness, and the stress of my marriage seperation I don't want to lose sight of what matters most in life right now. I am so very thankful for many things in my life. I am thankful for my children, my family and my friends. I am so very thankful for Jacob's health right now. His joints are quiet as well as his eyes presently. I am very thankful for the friends on my support group these moms have been such a tremendous help in understanding this disease.
I know a lot of you following my son's story are going through a lot with your own children fighting this awful disease. You have to find faith that the doctor's working with your child will find the right medications and your child will be on the way to recovery too. There are so many ups and downs and uncertainty with this disease. You need to take it a day at a time. Be thankful for the small steps of progress.
Happy Thanksgiving to you all.

Ahh a quiet Saturday..

2008-11-22T17:28:00.002-05:00

well besides the boys fighting. Jacob woke up today feeling a little better. We had an early start to the day at the movies. We met with the girls I work with, at 8:30 AM to see the movie Bolt. A local dental office that my dental office refers patients too rented out the movie theatre and we all got to go for free! We had free donuts, bagels, juice and coffee too. The movie was terrific! We had a great time.

After the movie Jacob had his basketball try-outs. Last year during the beginning of basketball is when his arthritis flare began. He attempted the first game of the season and was limping so badly he had to be pulled out. We tried to give him rests frequently, and even had a chair on the side of the court to have him sit on when he was off the court instead of sitting on the floor. He was so embarrassed to be sitting there. He didn't want to attempt anymore games because of the fear of his knee hurting. I didn't want to push him either. I have always let him decide what he can and cannot do. He knows his own limits. So he is back at basketball again this year. He is looking forward to the season starting. I am looking forward to seeing my son run up and down the court like every other parent watching their child.

Doctors, doctors and more doctor appointments!

2008-11-21T19:40:00.002-05:00

Seriously, I have had it with the running to doctors this week!

Today I picked Jacob up at school at 3:00 sure enough the fever was back! I was going to take him for his monthly blood work but with the fever I figured it was better to get him checked out too because tonight is his Methotrexate dosing. We ended up at the office for about an hour and a half. The doctor checked him first he has a lot of upper respiratory issues. She sent him up for his labs. Jacob surprisingly did well with tonight. Then we had to wait to make sure his counts were all okay. Everything came back within normal range but his sed rate was elevated. This can mean he is flaring with the arthritis. It wasn't too high so I am not going to hit the floor or anything. But this may explain the wrist soreness he was complaining about. The doctor said that we should maybe hold off on the Methotrexate tonight and let his body fight the virus.

I had to page the rheumatologist once again today. The third time in a week. EEKS she knows my voice now. Last night after Jacob's shot he was in the tub and a rash was all over his thigh, on the injection leg. Looking back, a few weeks ago he had a rash on his thigh that he was complaining of. The rheumatologist said it may be from the Humira. It is a side effect but not to be too concerned as long as it disappears!

These kids are a full time job. I somehow manage to work 3 days outside the house too!

The weekend is here! I am praying for quiet and no doctor appointments!

2008-11-20T18:06:00.003-05:00

I think the kids are all on the mend tonight! Jacob is doing much better. The fever only lasted 24hrs. I repaged the rheumatologist and she said it was fine to give the Humira tonight. She said it would of been okay last night but with him so feverish it was best not to put him through it. I just did the shot a little while ago. Jacob was happy because his Memere was here to hold his hand for it. He is getting so good at doing the injections. No tears at all tonight. He doesn't even flinch for the needle. The after effects of the med thougyh happen within seconds. He says it burns terrible. He is a brave kid though!

2008-11-19T20:14:00.002-05:00

Daniel is continuing to do okay. He is still saying his hip hurts when it goes out to the side. He isn't limping though. I am hoping another couple of days he will be completely better.

There is more sickness in the house tonight though!! I have a feeling this is going to be a VERY long winter. Jacob came home from school running a fever. His temp is almost 101. Tonight was supposed to be his Humira shot. He is just feeling awful. Stuffy nose and a headache. I wasn't sure what to do with the shot so I paged the rheumatologist. She said to hold off on it tonight. If he is better tomorrow give it to him. If he is still running a fever she wants me to call them. It seems like a balancing act between giving immune suppressants and keeping the jra at bay, and giving them and hoping it doesn't make him sicker during an illness. Viscious circle! With JRA, illness can sometimes cause a flare of the arthritis or uveitis. So withholding meds is not a good idea! I hope I will be able to give him the injection tomorrow. This Monday, in the morning while Jacob was finishing homework, he complained of his wrist hurting. He was having trouble writing. He had just started with the cold. I wonder if it was because of the illness.

Daniel update

2008-11-18T18:45:00.002-05:00

Daniel seems to be a little better today. His ANA bloodtest came back and it is slightly elevated. It is speckled at 1:40. His pedi doesn't think it is anything. He wants me to just keep an eye on him. I just get so nervous becasue the bloodtests can vary so much with jra. Jacob's ANA is currently negative and he had the flare of his life. Jacob's sed rate is generally pretty low too. Daniel's was 10. So I am going to wait it out! I just worry because he has complained a few times this past month in the morning that his leg hurts.

Daniel

2008-11-17T17:17:00.002-05:00

This morning Daniel, my 4 year old, woke up in tears saying his leg hurt and he couldn't walk. Maybe three times in the last month or so he has woken up saying his leg hurt. I had been just trying to make nothing out of it and ignoring the symptom. Because it can't be you know what. Today was different, he was in so much pain. I couldn't ignore it any longer. Jacob's arthritis started at the same exact age Danny is now. So today I started to worry that it may be that. I brought Daniel into the pedi this morning. He had bloodwork and the doctor checked his hip. When she bent his leg up Daniel started to cry. She watched him try to walk. He wouldn't. She called the orthopedic oncall at the hospital. He wanted us to meet him at the hospital. The bloodwork came back with his sed rate at 10. His ANA is yet to come back.

The orthopedic took a look at Daniel's hip. They took xrays. Nothing showed on the xrays. The orthopedic said that it may have to do with the virus he had a few weeks ago. It may of settled in Dan's hip. It is called toxic synovitis. But he is not sure. I told him that This isn't the first time he has woke up stiff and in pain. The doctor was saying that children usually have their Rheumatoid Factor positive for the diagnosis ot JRA. I am not sure if they even ran that test. Jacob's RF is negative. As in MOST children with jra. The orthopedic doctor thought otherwise. As of right now we are giong to watch Daniel for the next couple of days. And wait on the ANA test to come back. I know with JAcob his ANA has been negative and his sed rate low, when his knee was the size of a softball! I know bloodwork is only a help in diagnosing. The doctor said by the end of the week if there is no improvement he will order an MRI. Which will have to be under sedation.(FUN)

This afternoon Dan seems to be doing better. The mornings have been when he has had the trouble. Sound familier.. I am praying that this is a fluke and just reminent of the virus. They say it is uncommon for siblings to be affected. I have heard of some family's that have more than one child affected. I may if this continues, make an appointment with the rheumatologist to have him checked. Just to be sure!

At the beach

2008-11-16T17:59:00.002-05:00

We decided to hit the beach today! It was a balmy 57 degrees. Aside from the cool wind it was a beautiful day. The boys had a great time. They were completely soaked and very dirty.

The boys at the beach in November!

2008-11-16T17:51:00.002-05:00

Uveitis Facts

2008-11-16T17:46:00.000-05:00

Uveitis is inflammation inside the eye, specifically affecting one or more of the three parts of the eye that make up the uvea: the iris (the colored part of the eye), the ciliary body (behind the iris, responsible for manufacturing the fluid inside the eye) and the choroid (the vascular lining tissue underneath the retina). The structures of the uvea, marked here in red, are collectively known as the uveal tract. Uveitis is a serious ocular condition. It is the third leading cause of blindness worldwide, accounting in the United States for 10-15% of all blindness. Untreated or under-treated uveitis, or repeated episodes of inflammation within the eye, can lead to scarring and blinding consequences. Uveitis is a treatable condition. Patients are urged to seek consultation with a uveitis specialist, a physician with advanced training in inflammatory eye disease.

Inflammation of the uvea may occur as a consequence of diverse stimuli. These can be broadly classified according to the following mechanisms: traumatic, immunologic, infectious, and so-called masquerade. Uveitis may affect individuals of any age from infancy on. It also affects people from all parts of the world, and it is highly significant cause of blindness, accounting for 10-15% of all blindness in the United States. The average age (mean age) at presentation is approximately 40 years. Uveitis can affect people at virtually any age. Many patients in the pediatric age group, younger than 16 years, suffer devastating complications of uveitis. The peak age at onset of uveitis, in the third and fourth decades, magnifies the socioeconomic impact of uveitis on the individual and on the community.

The incidence of uveitis in the United States is approximately 15 cases per 100,000 population per year, or a total of some 38,000 new cases per year. Anterior uveitis is the most common form of uveitis, followed by posterior or panuveitis, intermediate uveitis is the least common form but still comprises a significant number of cases (4% to 17% of all cases of uveitis).

Facts about Uveitis:

Chronic uveitis is more common than acute and recurrent uveitis.
Chronic uveitis is especially common in patients with intermediate uveitis.
Nongranulomatous uveitis occurs more frequently than does granulomatous uveitis, especially in patients with anterior uveitis.
Noninfectious uveitis is more common than is infectious uveitis, particularly among patients with panuveitis and anterior uveitis.
Bilateral uveitis (in both eyes) is more common than unilateral uveitis (one eyes) in patients with panuveitis and intermediate uveitis.
Anterior and posterior uveitis cases have approximately equal distribution of unilateral and bilateral cases.
The mean age of onset is clearly younger in patients with intermediate uveitis, 30.7 years (+ 15.1 years).
Despite the huge advances in diagnostic techniques and the determination of ophthalmologists worldwide to reach and etiologic diagnosis, many cases remain in the idiopathic category (35% to 50%). The term idiopathic uveitis denotes that the intraocular inflammation could not be attributed to a specific ocular cause or to an underlying systemic disease, and it was not characteristic of a recognized uveitis entity.
The most common causes of anterior uveitis are idiopathic (37.8%); seronegative HLA-B27-associated arthropathies (21.6%), juvenile rheumatoid arthritis (10.8%), herpetic uveitis (9.7%) sarcoidosis (5.85%), Fuchs' heterochromic iridocyclitis (5.0%), systemic lupus erythematosus (3.3%), intraocular lens-induced persistent uvietis (1.2%), Posner-Schlossman syndrome (0.9%), rheumatoid arthritis (0.9%). Syphilis, tuberculosis, phacogenic uveitis, Lyme disease, and collagen vascular disease (Wegener's granulomatosis, polyarteritis nodosa, and relapsing polychondritis) caused some cases of anterior uveitis.
The most common causes of intermediate uveitis are idiopathic (69.1%), sarcoidosis (22.2%), multiple sclerosis (8.0%), and Lyme disease (0.6%).
The most common causes of posterior uveitis are toxoplasmosis (24.6%), idiopathic (12.3%), cytomegalovirus retinitis (11.6%), systemic lupus erythematosus (7.9%), birdshot retinochoroidopathy (7.9%), sarcoidosis (7.5%), acute retinal necrosis syndrome (5.5%), Epstein-Barr virus retinochoroiditis (2.9%), toxocariasis (2.5%), Adamantiades-Bechet's disease (2.0%), syphilis (2.0%), acute posterior multifocal placoid pigment epitheliopathy (2.0%), and serpiginous choroidopathy (1.65%). Other causes of posterior uveitis include punctate inner choroidopathy, multiple evanescent white-dot syndrome, multiple sclerosis, temporal arteritis, presumed ocular histoplasmosis, fungal retinitis, and leukemia.
The most common causes of panuveitis are idiopathic (22.2%), sarcoidosis (14.1%), multifocal choroiditis and panuveitis (12.1%), ABD (11.6%), systemic lupus erythematosus (9.1%), syphilis (5.5%), Vogt-Koyanagi-Harada syndrome (5.5%), HLA-B72 associated (4.5%), sympathetic ophthalmia (4.0%), tuberculosis (2.0%), fungal retinitis (2.0%). Other causes of panuveitis include bacterial panophthalmitis, intraocular lymphoma, relapsing polychondritis, polyarteritis nodosa, leprosy, dermatomyositis, and progressive systemic scelerosis.

The above-mentioned percentages and figures were obtained from a study of 1237 uveitis patients referred to the Uveitis and Immunology Service of the MEEI, Harvard Medical School, from 1982 to 1992. These figures were found to be similar to the results of other studies of tertiary referral centers from different parts of the world., especially those of developed countries.

Just a thought!

2008-11-14T21:33:00.002-05:00

If anyone would like me to post the link to their child's blog email it to me. Reading up on the different Journey's of children who are fighting JRA/uveitis can help others!

Unorganization...

2008-11-14T21:23:00.004-05:00

I was just trying to organize the appointments that are coming up. I can't for the life of me remember the date of Dr. Foster's appointment. I am guessing the first week of December. I have to check!! I had to reschedule the Rheumatology and orthopedic appointments to the first week of January. There is so much to keep track of. Jacob is still having bloodwork every four weeks to monitor the side effects of the Methotrexate. He was due for it this week and we weren't able to get to it! I am hoping for Monday. Which means next week will be Humira and bloodwork. Two needles in a week no fun!

We are basically on two month follow-ups for the eye doctor and the rheumatologist. Not too bad. We have come a long way since the beginning of the year. Then, we were going to the doctor every couple of weeks and squeezing physical therapy into the school week too. Nice to be relatively stable. No change is good! When I figure out the dates of the appointments I should post them here to remind myself!

2008-11-12T17:19:00.002-05:00

SHHHHHH I snuck a nap in this afternoon. Just thought I would share that! I am exhausted!

Some facts on JRA

2008-11-11T22:03:00.006-05:00

Why is Prompt, Aggressive Treatment of

Juvenile Idiopathic Arthritis Necessary?

In the last decade important changes have

occurred regarding treatment of juvenile arthritis that

can prevent long-term disabilities. Published studies

demonstrate:

•

The majority of children with juvenile idiopathic

arthritis will continue to have active disease as

they enter adulthood. (this is discouraging!!!)

•

Persistent synovitis leads to joint deformity and

destruction and often occurs less than 2 years

following onset of disease.

•

Disruption of proper joint function predisposes

children and young adults to premature

osteoarthritis and a potential of lifetime disability.

•

Chronic disability from juvenile arthritis can stunt

the physical and psychological growth of a child,

and may disrupt family dynamics due to ongoing

psychological and economic stresses

What is Remission?

The first phase of remission is the achievement

inactive disease

which is defined as: no joints

with active arthritis; no fever, serositis, splenomegaly,

or generalized lymphadenopathy attributable to JIA; no

active uveitis; normal ESR or CRP; and a physician’s

global assessment of disease activity indicating no

disease activity.

Clinical remission on medication

defined as inactive disease on medication for a full six

months, and

clinical remission off medication

achieved when there is inactive disease off of medications

for a full 12 months. Although many children can

achieve clinical remission on medications, most will

have a flare of their arthritis within three years of

discontinuing medications. (Jacob was just past the 3 year point off meds!)

Can I just stress EARLY DIAGNOSIS IS THE KEY!!! After Jacob was in clinical remission for a few years I didn't give the arthritis another thought. I thought he had outgrown the disease. When his knee flared up this January it was a complete shock and by the extent of the overgrown synovium it had been coming on for a while. When he was seen by his rheumatologist in January it was on an 18mo. follow-up.

Online friends, and many thanks to ABCnews.com

2008-11-08T11:39:00.002-05:00

I just made a comment on the article on ABC news thanking them. These kinds of things can help contribute to raising awareness in our fight against Juvenile arthritis. The Internet has been a blessing to find information and to find friends who are battling this disease also. It always helps to hear what others are going through. Another Mom in Oregon named Erika has a daughter named Charlotte. This is a picture of sweet Charlotte.

Charlotte is an inspiration to all the kids who are fighting Uveitis/JIA. She endures so much in her battle. Friends like these are great support. Even though we only get to talk online it is so helpful! Check out Charlotte's journey on the right side of my blog. Erika and I will continue to blog in the hopes that it helps someone out there find answers in their journey. We along with other parents will continue to raise the awareness in our childrens disease. It may help that parent who is told "it's only growing pains" to seek another opinion. Arthritis is real and can do damage if it is not treated in it's early stage.

ABCNEWS.com Article

2008-11-07T15:18:00.002-05:00

Nov. 6, 2008
Nine-year-old Jacob Martin of Dracut, Mass., has trouble sitting still during group time in class.At first glance, this may not seem out of the ordinary. But while Jacob appears to be a typically restless fourth-grader, his experience stems from a condition that is more commonly associated with his grandparents. Jacob has arthritis.
Jacob's legs stiffen and swell as a result of polysystemic juvenile rheumatoid arthritis, a kind of arthritis that causes damage to numerous joints and tissues in children. But his mother Joanne Martin said he refuses to tell his teacher that he feels uncomfortable and endures the pain anyway."Anytime the situation comes up, I tell him it is OK if the other kids know," Martin said. "But he doesn't want to be the center of attention."Jacob is one out of an estimated 294,000 children in the United States who have been diagnosed with a rheumatologic condition, according to a 2007 study by the U.S. Centers for Disease Control and Prevention in Atlanta. And, like Jacob, some children choose to keep silent about their diagnosis.The exact causes of juvenile arthritis remain unclear, but researchers believe that like its adult counterpart, the condition arises when the body's immune system malfunctions, damaging the body's own tissues. In many cases, effective treatment is available in the form of anti-inflammatory medication, physical therapy and exercise.But unfortunately, while children were once thought to outgrow the condition, evidence suggests that the disease may recur and endure long into adulthood, said Dr. Egla Rabinovich, co-chief of pediatric rheumatology at Duke University in Durham, N.C.Lying to Keep the SecretAlthough some of these children use secrecy as a tactic to feel normal, Rabinovich said, those who keep it to themselves may, ironically, find themselves feeling socially isolated."Kids can be very secretive about their diagnosis," Rabinovich said. "They may lie to their friends about why they cannot participate in physical activities, and eventually one lie can lead to the next lie."Dr. Robert Sundel, director of rheumatology at Children's Hospital Boston, said parents should leave it up to the child to disclose their diagnosis to their friends."Initially, they need to accept it first, but the reality is it can be months or years that they won't want to share with anyone," Sundel said.Elizabeth Murphy-Melas, author of the children's book "Keeping a Secret: A Story About Juvenile Rheumatoid Arthritis," said, "A hurdle children with arthritis have is acceptance [by others and of themselves] while maintaining self-esteem."In her book, the main character, Jennifer, learns she has juvenile rheumatoid arthritis after she finds herself struggling to play soccer. Despite her mother's encouragement, she hides her diagnosis from her friends, and instead lies about her condition. But Jennifer is relieved when she is finally able to reveal why she is not able to participate in physical activities with her friends.Murphy-Melas said that while the use of excuses may be one way to keep a secret, her book is about the stages a child may go through in accepting his or her diagnosis."Jennifer waited and told her condition on her own terms," Murphy-Melas said. "Children with arthritis should be able to tell friends about the disease when they're ready, and on their own terms."Finding Someone to TellAs debilitating as juvenile rheumatoid arthritis can be for a child, some learn to overcome their silence about their diagnosis with the help of their parents who have also been diagnosed with rheumatoid arthritis. Although exact numbers are unknown, a minority of children with arthritis have a parent who is also affected, Duke's Rabinovich said.But such is the case with 15-year-old Oscar Seman, who has polysystemic juvenile rheumatoid arthritis and whose mother Pam Seman, 48, of West Hills, Calif., also has rheumatoid arthritis. Seman said her son, who was diagnosed three years ago, is selective with whom he shares his diagnosis because he fears some will not believe him."Oscar will run, ride a bike and play with his friends," she said. "When I pick him up, he will try hiding his limp to the car and he will cry afterwards because he is in such pain."
Seman said she understands that her son may feel excluded from other teenagers because of his arthritis. Seman, who was diagnosed in her 20s, also tried not to let her arthritis limit her physical activity. She sometimes ignored symptoms and would skip taking her medications.While the long-term effects of those who keep their diagnosis a secret have not been studied, Rabinovich said that in her experience, those individuals are more likely to ignore medication and perhaps other recommended treatment."Today, juvenile arthritis is manageable in that children with arthritis are physically indistinguishable from others," Rabinovich said. "Those who are in denial of their diagnosis will miss opportunities to help themselves."Rheumatologist Sundel agreed, adding that arthritis treatment has helped children overcome the physical differences of the condition."Usually, within six to 12 months, some cases of newly diagnosed arthritis are controlled," Sundel said. "So keeping it a secret in the beginning may not have any physical ramifications in the long run."Although Oscar does not respond to his doctor's recommendation to communicate his diagnosis with others, Seman said her son has now opened up about his experiences with her."With Oscar I would say it helps him that I have it, too," she said. "Because he sees in me what it will be like in the future -- I am living with it and I'm doing OK -- he'll talk to me about that."While talking to a parent may be one step toward accepting the disease, Rabinovich said communicating with a close friend in the child's age group will offer another level of understanding, both from the peer and affected child."In general, the message is that secrets lead to bigger secrets and a child can find themselves very isolated without support for their condition, Rabinovich said, adding: "I think they would be surprised how much support their friends would give them if they only knew."Copyright © 2008 ABC News Internet Ventures

Jacob is in a web article

2008-11-06T11:52:00.001-05:00

Check out www.abcnews.com and click on health. Jacob is featured in a web article on Juvenile arthritis!

the "bug" part 2

2008-10-31T12:11:00.002-04:00

Last Friday, Jacob had the stomach bug/fever. Well, last night Daniel had the "fever"! And what a fever it was! I am hoping this was part of the bug that already went through this house and nothing new. Daniel had been fine the entire day yesterday. At about 8:30 last night he spiked a 104 degree fever! He had the chills and was nodding off to sleep. By 9:00 we were in the ER. They checked him for everything from the flu to strep throat, ear infection, RSV and nothing showed. They took bloodwork and the only thing that showed up was his white blood cell count was elevated. He was given two shots of antibiotics and we were finally sent home at 3:00 AM this morning. What a long night. I slept about an hour last night. He did get to sleep some in the ER so he was up at his usual 7:00 time. With trick or treating tonight I am hoping he still feels better. I am keeping up the tylenol and he is fever free at the moment. I think this is the third year in a row that he has been sick on Halloween. Popular week!

Two appointments, one day!

2008-10-27T19:28:00.002-04:00

Today we left early this morning in what we thought was going to be just Jacob's orthopedic appointment. When we arrived at Floating Hospital in Boston at 10:30 this morning there was a very Full waiting room. When I was checking in with the receptionist I spoke to the receptionist in Rheumatology who was also checking patients in. I knew that the orthopedic doctor was very backed up so I asked if Dr. Miller, who is the other ped. rheumi could squeeze us in instead of seeing Dr. Lopez on Thursday and she was able to do it!

We saw Dr. Miller first. She is really nice. I really don't mind Jake seeing either doctor they are both very good. She said everything was looking really great. She didn't remember his entire history but when I mentioned the synovectomy she said oh ya it was the case that it was suspected to be PVS syndrome. Jacob's knee was one of those cases that was not in the ordinary description of what JRA looks like. (you may recall the biopsy and uncertainty of the MRI back in March). Anyway, she said he looks great today! The only concern is still the small leg length discrepancy and the crooked back. No obvious swelling anywhere. (thank God) I did ask why he was still limping occasionally after running and sitting for long periods. She said his knee will never be"normal" after all he has gone through. That is kind of discouraging for a nine year old.

We went off the take a scan o gram of his legs.

After the xray and waiting 2 1/2 more hours we saw the surgeon. (very long wait, busy man though!) Dr. Braun reviewed the xray and said it was only maybe a half an inch difference in length. Not much to be concerned about. It is to be watched very closely though. The left knee bone is still overgrown. The width is larger if you look at both knees. Again not much to be concerned with. The back on the other hand, is curving quite a bit. The doctor said this can happen because of the leg growth because of the JRA but the lengths are not that far off to do this. Jake's back could be a entire different issue.

We are scheduled just before Christmas to go back to both doctors. Xrays are going to be taken of his back then to review the scoliosis. The meds are to remain the same. Those are not going to be changed because Jake's eyes are running the show. These meds are still working to retrain his immune system for the complete two years to keep the uveitis at bay.

A little stomach bug

2008-10-25T12:24:00.002-04:00

I didn't think I would be posting until after the orthopedic appointment on Monday. I figured I would fill you in on last night's excitement. Yesterday, when I picked Jacob up at school he was complaining of his stomach hurting. I knew the night was going to be fun. At about 6:00 he started vomitting. The stomach bug has hit. From six until about 1 o'clock this morning he laid with me in bed and threw up every half an hour or so. I was getting worried that he would get dehydrated. He didn't thank God! He is doing better today but still quiet and not eating. I held off giving him his methotrexate last night because I was worried that it would make his stomach hurt and feel worse. I was going to give it today but he is still not feeling well so I decided to skip it. I hope it doesn't cause any issues. Hopefully he is on the mend today!

An update and some thoughts

2008-10-22T09:40:00.003-04:00

I know I haven't posted too much lately. I guess that is because there isn't as much to say, which is a good thing! Fall has come here along with some very cold weather! The heat has been turned on. I am dreading thinking about paying those heating bills.

Jacob has been relatively stable. Next Monday we have to go into Boston to see the orthopedic surgeon. He is going to do xrays to check the growth of Jacob's leg bones. I am very curious to see what the result is. I still think the leg lengths are off. I can see it in the way his shoulders are when he is standing. I am going to have the doctor look at the scoliosis also. I am also wondering if we should do another MRI of his knee. Jacob is still have pain with it. After soccer last weekend he was limping like crazy. He also has complained that if he sits to long on the floor he is getting stiff and sore.

Next week is also the rheumatologist appointment. It is on Thursday. This will be good timing to review what the orthopedic says. I am also going to have the Rheumatologist see what's up with his fingers. Jacob has been using a pencil with a thick grip on it and he says he is doing much better in school with it. His writing is awful though. He used to write so much neater. I don't know if it is because of the stiff/sore fingers or just laziness.

I just wanted to comment on the map I have on the side of my blog. I think it is so cool that people from all of the world have been following my son's journey. The rarity of the disease makes us all look for any info we can get our hands on. I started this blog because of finding "Anna's journey"when I was desperate to read anything I could to see what we were in for in regards to uveitis.
You can read anything you want in a book but I think reading other people's stories on the real life of fighting these diseases is so much more accurate!

Not only do the blogs help me to understand how our children and their families cope with chronic illness, the support group that I frequent (www.kidsgetarthritistoo.com) have amazing moms who can answer any question imaginable. Out of the group of us we have all had experience in every aspect of Juvenile arthritis. So any question we have there is always an answer. Check out the site if you would like!

P.S. Shot day today! Jacob didn't remember this morning. Whew. He has asked the last few mornings if it was the day. So I will spring it on him when he gets home from school. The quicker it is done when he gets home the happier he will be for the rest of the night!