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Allyson
Posted Thursday, November 06, 2003 10:06 AM


 

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I have a seven year old daughter, Hannah, who has been tentatively diagnosed with Juvenile spondylarthropathy. She has a chronically elevated sed rate, tests positive for HLA B27, has a family history of ankylosing spondilitis, has chronically swollen achilles tendons, and has pain and minimal swelling around her knees and ankles. And I forgot to mention extreme morning stiffness and fatigue. She has been on Vioxx for almost six months, but it doen't seem to be helping to any great degree - she wakes up most mornings crying and is unable to move her legs. By noon you would't be able to tell there was anything wrong with her! We are now running a 5 day run of prednison to help confirm arthritis and then possibly move to a more effective drug than the Vioxx. The rheum led me to believe that if all her complaints were due to inflamation, she would feel immediately great on the pred, but she actually feels nauseous and the am stiffness has remained by day 3. However, the swelling has subsided and the pain is ALL GONE. She actually offered to go to school today! Anyway, I feel very isolated as a parent and as much as I like our ped rheum, he's never experienced this from a parent's point of view. Not as many kids have spondilitis, I guess, so I am eager to hear from anyone with a similar diagnosis.
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TerryB
Posted Thursday, November 06, 2003 2:12 PM


 

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I'm surprised that the doctor used the Vioxx for 6 months before trying something new. There's probably something I don't understand.
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Allyson
Posted Thursday, November 06, 2003 3:41 PM


 

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TerriB Thanks for your reply. In the doctor's defense, summer was an easy time to deal with difficult mornings. School put the whole thing into perspective and made me realize that she needed more relief. Also, he seems perplexed by how bad she seems to feel since her physical exams are largely unremarkable. (Unlike my son, who has mono-JRA in his left knee - it was VERY swollen and responded immediately to a steroid injection and naproxen.) Also my rheum seems surprised by her chronic fatigue, but that surprises me since I keep reading that fatigue is a common symptom of arthritis.
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TerryB
Posted Thursday, November 06, 2003 6:14 PM


 

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I get the picture Allyson. Sometimes as a parent you don't know if the treatment is adequate especially if the child doesn't complain much. School certainly does put things into perspective. I think the doctors are looking to us for direction sometimes because of the possible side effects when you go up another notch on the treatment ladder. One doctor told us that more than 1/2 hour of morning stiffness is a sign that a change is needed. Sometimes it is hard to tell just by observing a child how long the morning stiffness is lasting. Frustrating disease.
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MissyW
Posted Sunday, November 09, 2003 7:18 PM


 

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Allyson, My eight year old son, Nathan, has juvenile spondyloarthropathy. His symptoms are very similar to Hannah's. He is on Celebrex and Plaquenil. The mornings and evenings are difficult, and by noon he acts like a healthy child. On wednesday he had a recheck with his ped. rheumatologist. He looked great, because it was 1:00 pm! She said we could give him some Motrin in the morning with the Celebrex. She thinks it will kick in quicker and help get him off to school. I'm very hesitant to do that since he is already having GI symptoms, like burning and pain. I would like to hear what your treatment plan is after the prednisone. I know what it is like feeling isolated because of the disease. Most people who know us have no idea what an impact arthritis has on our family. Take care!
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Allyson
Posted Saturday, November 15, 2003 1:59 PM


 

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Missy, What a breath of fresh air to hear from another parent like me! Hannah actually got nauseous and felt terrible on her 5 day run of pred, but it did bring down the swelling at her achilles and other places I think. Sooo... her rheum is going to start treating her more aggressively : she's going to continue on the Vioxx for now, start prednisone for a month and begin Methotrexate. This time he's having her take zantac 75mg. and it's really helped her intestinal upset. She seems to be feeling better, but its too soon to tell. Would zantac help Nathan? I know its over the counter. The methotrexate will take a few weeks to show much effect so I'll keep posted - my big concern was that it tends to make the kids sick the following day. I gave it to her on a Friday so that if it made her ill it would be on a Sat., but so far so good. Sometimes I'm afraid to be hopeful! How are school issues with Nathan? We are very hit and miss, but we are fortuneate that everyone from the principal to the office staff, nurse and teacher (who has arthritis too) is SO understanding and supportive. I would surely homeschool if they gave me any grief - the stress level is high enough as I'm sure you know! Let me know more about Nathan and how he's doing. Allyson
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MissyW
Posted Sunday, November 16, 2003 8:46 PM


 

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Allyson, Nathan feels terrible when he takes oral steroids, too. Thanks for the Zantac idea! I actually started giving him Prilosec OTC the other day. No improvement yet. He has missed a couple of mornings of school so far, but missed several days due to strep throat and viral infections. It's so hard for him to recover after being sick. It has been like one big flare since the first of October. Thankfully, the teacher has been understanding so far. He really stresses when he has a worse than usual morning. He's afraid he might cry at school if he hurts too much, but he hates to miss. That fear comes from last school year, before he was diagnosed (4/03). He cried at school a few times. At that point he was only on Naprosyn, it did not help the pain. That was a major-stressful year!! When he was finally diagnosed, it was kind of a relief. I have considered homeschooling, but Nathan is such a social child. I think it would make him a bit depressed. (he's my only child) I have met several parents of children who have JRA, never one with spondylitis. Thanks so much for your posts!
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