Friday, July 22, 2011

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".

Saturday, July 16, 2011

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.

Wednesday, June 15, 2011

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!

Wednesday, May 11, 2011

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.

Sunday, April 10, 2011

Heel Pain

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.

Wednesday, March 30, 2011

Awareness Video

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

Wednesday, March 9, 2011


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!

Monday, February 7, 2011

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

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.

Saturday, February 5, 2011

Spreading awareness!!

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.

Sunday, January 9, 2011

Are you going?

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.

Wednesday, January 5, 2011

3 years since uveitis diagnosis

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.

Saturday, January 1, 2011

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!