Monday, April 27, 2009

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!

Sunday, April 26, 2009

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.

Sunday, April 19, 2009

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

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

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.

Friday, April 17, 2009

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.

Sunday, April 12, 2009

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!!

Thursday, April 9, 2009

Foot/ankle pain???


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.

Wednesday, April 1, 2009

Eye appointment

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.