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.

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.

Rheumatologist appointment

Today we saw Dr. Miller, Jacob's pediatric rheumatologist. I was very nervous today for the appointment, you know the other shoe dropping. I am still waiting for it even though it has yet to happen. It is funny how a having a child with a unpredictable disease like Juvenile Arthiritis can make you feel that way.

The appointment went very well today. Dr. Miller said she is very happy with how Jacob has been doing. She said there was no signs of inflammation today. I thought for sure his knees were swollen she said they were not. I am wondering if the weight gain he has had is making his knees look a little chubby. He has put on so much weight since this time last year. He is actually back on track on his growth curve.

The only issues we still seem to be having is the leg length discrepancy. He is still measuring one leg a little longer than the other. His thigh and his calf are still smaller on the surgery side. There is also slight contractions on both legs. This is completely from the way he is walking. While he was in the flare up last year he would compensate for the swollen knee by walking with the leg slightly bent. I can see he is still walking that way. Dr. Miller said it can be corrected with physical therapy if we wanted to go. I am going to pass on that for the moment. It is very minimal and if it gets worse then maybe was will pursue it.

All medications will stay the same. Methotrexate 17.5 mg. (chemotherapy) once a week, And Humira every other week. He remains free of side effects from both meds. We continue to have blood work every month to watch for any changes. The methotrexate has to be carefully monitored in case of any issues with his liver. So far so good!!

Just for the record..it has been a year this week since the knee synovectomy. Ahhh things in life have been so much calmer!!

Stay tuned for the eye update on April 1st!! Hopefully all is well there too!

Arthritis Advocacy- GO Mikayla!!

Once again the importance of Arthritis Advocacy. Every voice can make a difference.

Mikayla's Testimony at the Congressional Hearing

March 18, 2009 testimony before the House Appropriations Committee, Subcommittee on Labor, Health and Human Services, and Education on behalf of the Arthritis Foundation


My name is Mikayla Minnig, and I live in Downey, California. I am here today on behalf of the nearly 300,000 kids like myself who have juvenile arthritis. I am 10 years old and in the 5th grade. I was diagnosed with pauciarticular juvenile rheumatoid arthritis when I was just 3 years old. Pauciarticular means it affects four or fewer joints and usually large joints. For me, it affects my left knee and ankle. I also am at high risk for eye inflammation and must have them checked often so I don’t become blind, which could happen. It all began when I felt a lot of pain and swelling in my neck. I couldn’t walk or run like the other kids, and I couldn’t turn my head.

For ten months I went to lots of different doctors to figure out what was wrong with me. Some of these doctors told my parents I must have bad growing pains or must be faking the pain and tears. Finally, we were sent to a pediatric rheumatologist—a doctor who treats kids like me with juvenile arthritis. Dr. Starr said I had arthritis. My parents were surprised. They didn’t know, like most people, that kids got arthritis. In fact, most people don’t know that juvenile arthritis is one of the most common childhood diseases in the United States.

People are surprised when I tell them that I have arthritis because I don’t look very different than other kids. But unlike other kids, I take a cancer drug every week plus daily medication to control my arthritis and it helps me try and lead a normal kid-life. I have met other kids through the Arthritis Foundation who are not as lucky as me. The drugs don’t work for them, and they end up in a wheelchair or have to have joints replaced. In fact, juvenile arthritis is the leading cause of disability in kids. I am also lucky to be able to see a doctor who understands and can treat my disease. Kids in 9 states don’t even have a single specialist to see them.

I am here today to ask Congress to focus more attention on kids like me with arthritis. Research is the key to a cure. Research has led to newer drugs that help kids stay out of wheelchairs, but these drugs can have really bad side effects. We need a cure! Right now, the government spends $9.8 million at N.I.H. for juvenile arthritis research. That sounds like a lot of money to me but when you think of the nearly 300,000 kids that works out to be just about $32 per child.

There is a group of pediatric rheumatologists that are working together to study and treat children with arthritis, but they need your help. With more funding and attention from Congress, more research studies can move forward to help find a cure. The Arthritis Foundation supports, at least, a doubling of juvenile arthritis research over the next few years. Also, the N.I.H. should spend more money training future doctors. Kids around the country are diagnosed too late to prevent damage – please help change this. I hope one day when I tell people I got arthritis at age 3, and they say “but kids don’t get arthritis’ I can tell them “you are right – not any more – because research has found a cure”.

Thank you for the opportunity to speak to you today.

Is a flare coming on?

The picture on the left is from September of 2008. The other picture is from this week. I am starting to wonder if Jacob's knees are building fluid. It seems like both knees have swelling above them. Neither one is warm to the touch. I like to take pics to compare as time goes by. Jacob's next appointment with the rheumatologist is on March 19th. I am kind of anxious to see what he says.