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.

Rheumatology appointment

Jacob saw the rheumatologist yesterday, nothing really new to update! He continues to do very well. The doctor said that all his joints looked great! So right now we are holding steady. Keeping on the same medication schedule. If it wasn't for the uveitis we would be looking at medication weaning in January. Jacob's eye doctor insists we keep with the same medication for 2 years. Two years will not been until July.

eye appointment

Big week this week. Jacob started 5th grade. He was finally able to begin school this past Monday. He is going to a new school this year. He was very nervous to start, especially because he was starting late because of his surgery. Speaking of surgery, he is doing well, finally! It was a very rough week and a half. He was in a lot of pain. He is healing well now and almost back to normal. As far as school goes, he really likes his new school.

We just came from Jacob's six week eye appointment. He is doing well. I was so nervous about this appointment because he has been off his meds for the last four weeks due to the surgery. He just restarted them within the last few days. There were no cells present!!! He does have traces of cataracts both eyes now though. His pressures today were 14 left eye and 19 on the right.

Follow up will be in another six weeks.

Jacob is four days out from surgery. It has been a very rough last couple of days. He pretty much has been on the couch. To say he is in pain is an understatement. He has been in agony. I have been giving him tylenol every 4 hours. It is not helping much. Today he seems to be improving slightly. The tylenol seems to help for about 3 hours then he starts asking for medication. He is in better spirits today though. Last night he had had it with the pain. He is still eating minimally. I am trying to make sure he takes in fluids so he doesn't dehydrate. Not a very easy task! Hopefully his weight does not suffer.

As far as school goes, he is yet to start! He missed his first two days last week and will miss the week this week. Also soccer starts today, not for him though!

Surgery is over

Update: The initial biopsy results came back as a tonsillitis. Nothing serious!! What a relief!


The surgery is over and we are home. Over all the surgery went very well. After everything Jacob has gone through, he is not a huge fan of being put to sleep. The surgery only took about a half hour. The doctor said that his tonsils were extremely large. A surprise he had found was that behind his right tonsil was a huge pocket of fluid. The doctor said that he must have had a really bad infection at some time.

Due to the rapid onset of his tonsillitis he is going to have a full biopsy. Tonsillitis is usually more of a chronic condition. We may hear the results today or it will be Tuesday because of the holiday.

While we were in the hospital Jacob's rheumatologist came in to see him also. He has been off his JRA meds since around August 12th. He still cannot go back on them until another week or so. They want to see him in a month.

Here are some pictures from his hospital stay:

before surgery


In the hospital room



The 8th floor roof deck playground



in the playroom at the hospital



The view from the roof deck

Surgery update

Jacob's surgery has now been moved up to September 2nd. The ENT in Boston ants to get this done because he is getting progressively worse. Unfortunately this is his first day of school! I am glad though that he is going to get this done sooner rather than later. The poor kid sounds awful. I am anxious to find out what is causing all of this. His tonsils will be biopsied and hopefully give us some answers on why this is happening. There are a number of things that can be causing this. We have ruled out mono and strep issues. Tomorrow he is having an EKG to be sure all is well for the anesthesia, and a chest xray to see if anything related shows up there.

surgery date

I just heard from the hospital, surgery is scheduled for September 8th. I am glad Jacob will be able to go to the first two days of school. Then he will miss the next two weeks!!

I don't think we are going to go to the arthritis walk now due to this. This year with everything going on with him and life in general, I haven't been able to get going on the fundraising anyway. I feel terrible. Next year for sure we will have to make up for it. Right now we are going to concentrate on getting him healthy!

I will post after his surgery and let you all know how he is doing.

Thanks for your prayers for him.

Preparing for surgery..again

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We were able to get into see the Pediatric ENT at Tufts Floating Hospital in Boston today. We got the news we were expecting to hear. Jacob needs surgery. He needs his tonsils out. I think this is definitely for the best now. He is not getting any better. His tonsils as well as his lymph nodes are swollen. Jacob also let the doctor look into his throat with a camera today and the doctor said he has some regrowth of his adenoids as well. Jacob had his adenoids removed when he was one. Lucky him, he gets to have them removed for a second time. The camera also shows that he has a deviated septum as well.

The surgery is going to be scheduled within the next couple of weeks, whenever we can get clearance from the rheumatologist for how long he needs to be off his immune suppressants. We have to be extra careful in doing this surgery on him because of the risks his meds bring. He will have to be admitted for the night at the hospital to be watched for bleeding.

We should know by Wednesday when the surgery will be. Next week school starts, bad timing! The doctor said he will have to be out of school for at least 10 days following the surgery. He will have to stay off his arthritis meds for a while after surgery too. I pray that this will not cause a flare up!

End of summer vacation

How cute is he? Who can believe summer vacation is ending! The kids go back to school on September 2. Jacob will be going into 5th grade this year. He is going to a new school. He is getting pretty excited! I, am a little nervous for the change for him.

I know that we are very lucky Jacob's arthritis has been generally very mild. (If you forget the huge knee surgery he needed for the very advanced arthritis in his knee.) He has been well controlled in general now. I read a lot on the Juvenile arthritis message boards and I see many of the kids are not so lucky. There are kids who suffer daily with pain from this disease. I pray that Jacob keeps on responding to the medications and doesn't go down that route again. In case he does though, I want the school to be prepared. I want the school to be informed ahead of time so if something pops up they will understand his limitations.

Oh, a tonsil update: We are still waiting for a consult at the hospital in Boston. Jacob just finished a week of steroids and another 10 days of an antibiotic this past weekend. Guess what happened? Within a few days his tonsils swelled huge and he is struggling to eat and talk again! I am probably going to call the pedi tomorrow and have him seen to probably start him on another round of steroids. Ah yes September 17th can't come quick enough. Speaking of school issues, surgery in the first month of it might be a problem.

uveitis website

http://gabriellesvision.org This is another great site for uveitis info. There is a section that has other children's stories. Jacob is listed in the section too! Check out the site.
Please watch the wonderful video too!

rheumatology appointment

Today Jacob had his routine rheumatology appointment. I am happy to say all good reports today! His joints looked wonderful! Actually even better than usual because he has been on steroids for the past week for his tonsils. Almost every joint was perfect. His left knee still has a little limitation to it, but nothing to stress over. He feels great and looks great!!

While we were there today we discussed the ongoing tonsil issue. Jacob has been on the prednisone for the past week and also on Augmentin. His tonsils looked pretty good today. The meds seem to be helping. A few weeks ago when he was originally placed on Augmentin, he seemed to improve. Two days off of the antibiotic his tonsils were back to square one. I don' t know if the steroids maybe did the trick now or what. He will be off both meds in a few days so time will tell.

The rheumatologist would still like Jacob to be looked at by the ENT, at the hospital in Boston. He is scheduled there on September 17th. She feels as though we need to be sure if he really needs them out. He is a high risk for surgery due to him being immune suppressed. He would need to be off his arthritis meds for at least a few weeks during the surgery time. This would risk a flare up.

I also asked the doctor about the new warnings on the TNF inhibitors. The Humira specifically. The chances of malignancy from these meds is very minimal. The reality of it is that these drugs have been a miracle to say the least for so many kids. It is a risk but the benefit definitely outways the risk. The Humira is saving my son's vision. I think of what would of happened if it wasn't for this med. Uveitis is such a serious disease that still blinds people to this day.

As I said time will tell what is going to happen with his tonsils. For right now we will enjoy the last few weeks of summer vacation!

tonsils..

Never a dull moment... For about the last month or so ago, I have noticed that Jacob has been sounding a little stuffy. His voice sounded a little different. Off and on , he had been having issues eating. He would choke occasionally on food. About two weeks ago he started to sound really bad. I looked into his throat and saw his tonsils were huge!! I called the pediatrician. His dad took him in the the pedi and the doctor was worried about his airway closing. HE was almost going to admit him into the hospital but the local ENT agreed to see him right away. The ENT decided to try to put Jacob on Augmentin for 10 days and have him back to recheck.

This past Wednesday I took him back for the recheck. Jacob still didn't sound very good. The ENT is thinking at this point it would be a good idea to have his tonsils removed. We decided it would be best if he was to go to Boston to have his surgery. The office tried to set up the consultation at the hospital but the PEDI ENT was on vacation until next Tuesday.

Tonight, Friday night, Jacob seems to have gotten worse. He was choking on even soft foods. I called the ENT back and he put him on Augmentin again and also prednisone. The doctor didn't think the pred would do much but it is worth a try because he is having so much trouble right now.

So we wait to hear back for a date for the consultation in Boston.

Two weeks ago I received a call from Nesse, who works at the Massachusetts Arthritis foundation. She called us to let us know she had tickets to a Minor League baseball game. The team The Lowell Spinner's play close by to us. I took Andrew and Jacob to the game. We had such a great time! I thought for sure the game would be rained out because it was drizzling when we got there, but the weather cleared just in time! These are a few pictures from the game. Thanks again to Nesse at the Arthritis foundation for thinking of us!

Biologics | Biologic Response Modifiers | Arthritis Today Drug Guide

Biologics | Biologic Response Modifiers | Arthritis Today Drug Guide

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Wow what a difference a year makes!

These pics were taken about a year apart. Last year during Jacob's arthritis flare up he was losing weight like crazy. He lost maybe 10 pounds. I think he had went down to about 58 pds. This summer, flare free, he is up to about 75 pounds!! HE is feeling great and continues to do very well.

Bug bites part 2

Jacob went back to the rheumatologist last Thursday, but I forgot to post about it! His mosquito bites were still not healed yet. They were looking better, but not gone. His lymphnodes were still pretty large. The doctor still didn't want to put him back on his arthritis meds yet. The plan is to continue the antibiotics for the remainder of the ten days, and to email her a picture of his knee this Thursday. The doctor wants to be sure his knee is free of any infection before restarting. The end of this week it will be three weeks since he has had the MTX and the Humira. We are risking a flare up in the hopes that his body can fight off the infection. The medications as you know are immune suppressants.

I will be very curious to see what his eye exam shows when we return there in a few weeks.

bugs bites and infection

Today we had an appointment with Jacob's rheumatologist and Orthopedic. It was good timing because we had another issue come up over the weekend. About a week ago Jacob had got about 7 mosquito bites around his knee. They were really itchy throughout the week. By about Friday they started to look infected. Was this because of his immune supression? I decided to hold off on the his Methotrexate because they were starting to look really bad. By Saturday and Sunday the area around a couple of the bites got very red and hot. His entire knee seemed to be swollen. The rheumatologist thinks it is a staph infection. She put him on a antibiotic and wants me to watch it closely. He is not to get any of his meds until this clears. We want his immune system to fight off this infection. She wants to see him back on Thursday. Jacob is in a lot of pain tonight and was actually saying he feels like it is his arthritis. His knee is stiff. He was begging me to give him his shot. Being 10, he cannot understand why I am not giving him the medicine to help his arthritis. I am hoping we can restart the meds soon. Without them we are risking a flare.

We saw the orthopedic today for the 6 month follow-up of the scoliosis. Jacob had his back xrayed again. The curvature of his spine has increased by about 3 degrees the doctor said. He still thinks it is in a "acceptable" range. I have to say, when I saw the xray it looked like a HUGE curve!! We are to return in 6 months to rexray the spine. He is also going to xray his legs to check the leg length discrepancy also.

This picture I just took yesterday of his knees. You can see the bites. The redness is difficult to see at this angle. The left knee is the swollen one. You can't see any definition of his left knee cap.

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.

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.

Shot night!

Every other Wednesday night is shot night. Parent's who's children are on this medication know very well that shot night is no fun! Humira is a very painful injection to give for him and me!

Although Jacob has the lidocaine to help numb the injection area, the medication itself burns terribly. I am amazed that he has come so far in his fear of getting the shot. Tonight he has asked me early to get the "shot over with". He is so brave! It helps keep me brave!

Very scary drive, but good news!

We just got home from Dr. Foster's appointment. It is snowing heavily outside and the drive was a nightmare! I am glad we made it back safely!

The nice thing about braving the elements today was that Dr. Foster's office was very quiet. There must of been cancellations. We were out of there so quick today.

Jacob's eyes still remain quiet. It is six months of quiet. His eye pressures were 16 today in both eyes. Well within normal range! Jacob did great with the pressure test. He is finally comfortable with the procedure.

I finally remembered to ask Dr. Foster today if Jacob needed to take pre-medication antibiotics before dental work and he said it was a good idea. The medications he is on to fight his jra and uveitis are immune-suppressants, there for we need to be sure he doesn't contract a bacterial infection during dental treatment. The risk is small, but it is worth being cautious.

Pictures of Inside a JRA knee

These pictures were taken during Jacob's knee synovectomy last March. You can see the excessive tissue growth. You can see the instrument they were using to clean all of the diseased tissue out. If you click on the pictures they will enlarge.

One year today

Today, January 23, 2009 marks the one year anniversary of Jacob's diagnosis of Uveitis. I can't believe that it has been a year already! Where did the time go?

I can still remember the day so clearly. It had been a while since we had been to see the opthamologist. We went in there thinking it was going to be just a routine check-up. Why shouldn't it be. They have always been.

We got the surprise of a lifetime that day. A diagnosis of uveitis. When the doctor said that Jacob had uveitis I had no idea of the battle it would become.

Looking back over the last year, I have learned so much about the disease. A disease that no one has ever heard of. A disease that is so rare, that it is estimated that only 15 cases out of 100,000 people have it in our population. Jacob is now one of those statistics.

To this day there are still 10% of people with Uveitis going blind. I KNOW Jacob will not be in this statistic. We are so very lucky to be able to receive the care he has.

Last year this time, a journey had begun. Now we continue the journey with complete confidence that he will continue to fight this successfully. I pray the medication he is on will continue to "trick" his immune system and keep his eyes and joints quiet.

We see Dr. Foster next Wednesday. Please pray he is still doing well. It is always a surprise because this disease is so silent.

Skiing again!

The side effects of a very suppressed immune system=a great time skiing!!

Orthopedic and Rheumatology appointment

We had a very long day today! We left the house at 9:30am and got hime at 5:30!
We saw the orthopedic doctor, the Rheumatologist and he had xrays of his spine.

Rheumatology: Very good visit. The doctor noticed no swelling in any joints. His left knee still has some extra growth to it. Not too much of a concern at this point though. Jacob had been complaining off and on about his fingers still bothering him. The doctor said to just keep watch of them there was no visable swelling to them. We return in 3 months.

Orthopedic: Overall good visit. It is confirmed though that he has scoliosis. Just a mild form of it at this point. This could of been caused from the leg length issue. We were able to see the xray of his back and I thought his spine looked way off the doctor said it is just mild though. He said we still need to watch it very carefully. It may get worse as he grows. In that case he would need a back brace. I don't even want to think of that! As far as the knee goes, the doctor thought it looked pretty good. He said though by this point the synovium would of grown back. So we are just to keep watch on it. I asked him about why his knee still hurts when he does a lot of exercise on it. Like running a lot or walking up and down a hill after sledding, he said that it shouldn't be from the surgery. It has been too long out of surgery to still have pain from it. He said it is likely from the jra. As long as it isn't keeping him from doing things then leave be. Sad to think at his age he "suffers" the day after playing too hard.

Looking back an entire year ago we have come along way. It was this week last year he restarted the JRA. The week this journey began again. We are moving forward with high hopes that he will still beat this disease.

Next visit is with Dr. Foster at the end of the month. We return to the Rheumatologist in 3 months and the orthopedic in six months.

New Publication on study of Cancer risk from meds used to treat ocular inflammatory disease

Long-term risk of malignancy among patients treated with immunosuppressive agents for ocular inflammation: a critical assessment of the evidence.

Kempen JH, Gangaputra S, Daniel E, Levy-Clarke GA, Nussenblatt RB, Rosenbaum JT, Suhler EB, Thorne JE, Foster CS, Jabs DA, Helzlsouer KJ.

Ocular Inflammation Service, Scheie Eye Institute, The University of Pennsylvania, Philadelphia, Pennsylvania 19104, USA. john.kempen@uphs.upenn.edu

PURPOSE: To critically assess potentially carcinogenic effects of immunosuppressive therapy in the ocular inflammation setting. DESIGN: Focused evidence assessment. METHODS: Relevant publications were identified by MEDLINE and EMBASE queries and reference list searches. RESULTS: Extrapolation from transplant, rheumatology, skin disease, and inflammatory bowel disease cohorts to the ocular inflammation setting suggest that: 1) alkylating agents increase hematologic malignancy risk and cyclophosphamide increases bladder cancer risk, but less so with < or ="18" color="#000099">tumor necrosis factor (TNF) inhibitors may accelerate diagnosis of cancer in the first six to 12 months, but probably do not increase long-term cancer risk; and 4) changes in risk with methotrexate, mycophenolate mofetil, and daclizumab appear negligible, although nontransplant data are limited for the latter agents. Immunosuppression in general may increase skin cancer risk in a sun exposure-dependent manner. CONCLUSION: Use of alkylating agents for a limited duration seems justifiable for severe, vision-threatening disease, but otherwise cancer risk may be a relevant constraint on use of this approach. Antimetabolites, daclizumab, TNF inhibitors, and calcineurin inhibitors probably do not increase cancer risk to a degree that outweighs the expected benefits of therapy. Monitoring for skin cancer may be useful for highly sun-exposed patients. Data from ocular inflammation patients are needed to confirm the conclusions made in this analysis by extrapolation.

PMID: 18579112 [PubMed - indexed for MEDLINE]