July 2012 update

 I know it has been a while since I updated the blog. Everything has been going well with Jacob. At the last rheumatology visit in April we decided that we would try to wean down on Jacob's Humira. He has been on Humira for 4 years now. (time flies!) The rheumatologist and I discussed weaning him down slowly. We went from giving the Humira every two weeks to every three weeks. Jacob seemed to be okay with that until about mid May, when he decided he was done with the med. He flat out refused to let me do the injection. I don't know if this is what many families go through when the kids hit the teen years. I emailed his rheumatologist and she said that we can give it a try stopping it. Jacob had the understanding that he may need to go back on this if his joints started to get inflamed again. We just saw the rheumatologist 2 weeks ago. Overall he is doing great! The only thing that showed was both of his second toes were swollen. They xrayed his feet to be sure that there was no bone damage happening. Thankfully there wasn't! The doctor gave Jacob 5 options. (I know he likes to have some control in deciding his treatment) She said we can watch the joints a little longer and see what happens, he can start Meloxicam (an NSAID), Start MTX, start Humira, or restart both Humira and MTX. Jacob chose "option 2". So he started on the Meloxicam. We are to return in another month to the rheum because she wants to watch him closely. I think the appointment is the first week of September. We also have an appointment the end of August for his eyes. I will be very nervous for this appointment because he will of been of the Humira for 3 months. This is the longest he has been off meds while he has had uveitis. This appointment is good timing if his eyes flare we know that he has no choice to go back on the meds.

You can see the swelling in the second toe

Rheumatology, Orthopedic and Nephrology appointments. April 9, 2012

This past Monday Jacob had three appointments. Nephrology, Rheumatology and Orthopedic. What a long day that was! It was good I could coordinate seeing all three doctors because I only needed to miss the one day of work. Having a child with a chronic illness can be tough to manage being a working parent. It has been much easier now that things have been relatively quiet for him and we only need to go every few months or so. During eye or joints flares, that is another story!

We saw Nephrology first. Jacob has been having hematuria for some time now. He had a bout of this when he was five years old and it had stopped for a long time. It has been going on for quite a few months again. He started seeing the Nephrologist last summer. We still don't really have any answers. An ultrasound was negative. Jacob's dad and I were negative for the condition. (it can be familial) This time  the doctor ran some extensive labs on his kidneys. I counted 21 tests on the lab slip. He is looking for an immunoglobulin disorder to Lupus and is rechecking the kidney function and ANA etc. If these blood tests come up negative then we will continue to follow the Hematuria and watch for any changes. The doctor has thrown around a possible biopsy, but decided at this point it isn't necessary. Thank God! Hopefully we get the blood work results soon!

The Rheumatology appointment went very well! There was no joint inflammation anywhere. I was a little nervous about this appointment. About a week ago Jacob had woken up and was having a lot of knee pain. He went off to school that morning limping. It went aways fast as it came. Apparently during the last few months Jacob has grown a lot. Last visit he had some leg length discrepancy and some size discrepancy in his calves. This has all evened out.
There was some slight stiffness in his left hip but she could push past the stiffness. We decided to try to wean Jacob off of Humira. We are going to start slowly. Instead of giving it every 2 weeks we are going to go to 3 weeks. He has been on this for almost 4 years. I am nervous, but I feel as though we need to try! So I will need to watch closely for any trouble with his joints or his eyes.


The last appointment was with the orthopedic. Jacob had his usual xrays to check the curvature of his spine. His spine is curved at 16 degrees. This is still considered minimal. With puberty the scoliosis can worsen. So we are so glad that it is pretty stable. We won't need to return for another 6 months to the orthopedic.

Awareness

eye update 2/1/2012

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!

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

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

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

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!!

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

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.