2 year mark for Uveitis remission

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

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

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

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

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

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)

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

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

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

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.