6 week eye appointment

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

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

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

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

school vacation extended

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

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..

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!!

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???

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.