New diagnosis of JRA

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charlie'smom

Posted Friday, September 25, 2009 2:16 AM

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Last Login: Tuesday, October 20, 2009 11:38 PM
Posts: 4, Visits: 62

Last november, our 7 1/2 yr old son woke up one morning and couldn't straighten one of his fingers. We went to the ped and then a hand specialist, and they said he had a "trigger finger". We treated him with prednisone x 5 days and it went a way. Weird? ...a month later, he started to complain that his foot hurt. We had been playing in the snow in new boots, and I thought it was that. He was limping and complaining. I looked at his foot and it appeared to be really swollen, - sprained or maybe broken. We went and had it xrayed, but there was no fracture, or sign of sprain. So we drew labs, and they were negative. I feared then that it was some kind of arthritis, but the peds thought it might be a virus or an injury, but no injury had occurred. A few weeks later, he woke up in the am crying about his hip hurting. We went to the Ped again, and they suggested that maybe he was under stress from a difficult teacher he had at school. Several weeks later, he woke up i the middle of the night crying about knee pain. His knee was obviously swollen and we took a photo and went to the ped office. We were referred to specialist about 2 hours away. Because he did not seem to have Symptoms that lasted "6 weeks or more" in one joint, we were told that maybe he was developing jrs, but did not fit the criteria. The Ped Rheumatologist thought maybe had had Anylosing Spindyolytis, this really scared us. Labs and xrays were taken and all were negative. We were told to just watch and wait and see what happened. Since that time, our son has had 2 more times where he complained about his knee, one more time about his hip, and 2 more trigger finger episodes, where he needed to have steroids. Ibuprofin or naprosyn seem to work really quickly for the non-finger joint pain and swelling. We recently went to a new Rheumatologist, who upon hearing the entire story, diagnosed him with "inflamatory arthritis". He said that because of the atypical presentation, he was unable to diagnose which type of juvenile arthrits he thinks this is, but that it falls under the "umbrella" of JRA.
So, here were are now, and this new MD, who we really liked and have heard really great things about, prescribed Plaquenil for our son to start taking right away, and wants to see him again in 2 months. My husband and I are feeling really afraid of all of this. I have scoured the internet for info about this med and have read lots of pros and cons. The side effects seem big for such a little guy. But, part of me is still waiting "to see if it happens again". I have read here that this is a common theme among parents of JRA kids. I'm just not sure if his symptoms outweigh the potential risk of taking an anti-malarial med, one I have heard that helps, but nonetheless a big med. Any thoughts, ideas, insight, experiences or ANY input about ANY of this would be much appreciated, as we feel like we are kind of flailing at this point. Thanks for reading all of this! Glad to have found this web site, it has been really helpful.

Charlie's mom

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Juile

Posted Friday, September 25, 2009 8:26 AM

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Last Login: Wednesday, November 18, 2009 12:48 PM
Posts: 101, Visits: 134

I'm sorry to hear you are having to go through this. Arthritis is very difficult for a parent because there is a lot of waiting and hoping involved. Many of us have driven ourselves crazy with worry. Dealing with an unknown outcome is hard for a parent. I hope it does just go away, but it sounds like you are starting to worry at this point that it might not on it's own. If it isn't going to go away you will know soon.

Arthritis meds are always scary for a parent at first. I think all of us freaked out when we first read the long list of possible side effects that are attached. BUT most people will agree that once you see how much of a diference it makes for your child and how he feels you will feel better about giving it to him. Also, arthritis can cause permanent damage to joints if left untreated.

I have not heard of the drug you are talking about, maybe some of the other parents can advise you better about it. My daughter was on Methotrexate and it worked wonders for her. No matter what meds you start him on, your doctors will closely monitor him on it with lab tests. I hope this helps. Hang in there, it can be a long process getting to the point of remission, but it IS possible and the stress and worry you feel right now will subside with time as you see him improving. My daughter is currently in remission without any meds and, although there have been a few concerns along the way, has achieved over a year without needed to go back on them.

Take Care,
Julie

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NancyA

Posted Friday, September 25, 2009 5:44 PM

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Last Login: Yesterday @ 5:30 PM
Posts: 53, Visits: 107

Hi Charlie's Mom

My daughter was Dx in 4/09 with Poly JRA after suffering for over 6 months. My husband and I were also reluctant about starting treatment as well. We did the usual route of 2 anti-inflammatories, now on MTX and Folic acid.We are seeing improvement and it's only been 12 weeks on the new meds. My daughters case was considered subtle. Blood work was only mildly elevated and only a trained eye could see the swelling. She was Dx at her 2nd Rheumy visit. Our Dr felt since it was so subtle it could easily be overlooked. I did research and shared my story with others here and came to a decision.

We decided on early and agressive treatment and it was a good choice for her. She's doing well. One parent on this site I believe it was Colleen was told by her Dr. He said "I cannot guarantee what will happen if you try this medication" (ie: will it work, side effects etc.) "But I can guarantee what will happen if you do not treat this disease." Straight to the point!

My husband and I wanted to treat this disease before it caused permanent damage. Especially to my daughters jaw, fingers and knees. Good Luck with your decision. I know you'll make the right one for your child. There's lots of imformation and support here. You're not alone.

Nancy+child Poly JRA 4/09

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MoK

Posted Sunday, September 27, 2009 10:24 PM

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Last Login: Sunday, November 15, 2009 11:23 PM
Posts: 29, Visits: 54

I'm sorry thst you had to find us, but you did find a great resource here. There's a lot of info, support and experience here.

It is so frustrating and overwhelming at first, but it will get easier. My son also was diagnosed with inflammatory arthritis until they could classify the type of jra. It took several years, actually. But, he was followed closely and being treated during that time, of course. It is pretty common for a definite diagnosis to take a while, and also common for it to take a while for the doctors to find the correct combo of drugs that work the best for your child.

We were actually living overseas for the first few years after my son's diagnosis, and the philosophy there was to be very conservative with meds as long as the child was doing "ok". I can say now after moving back to the US and going to a great rheum. here who is quite aggressive with meds, that the aggressive philosphy is so much better for us. My son's "ok" overseas was clearly not ok, which was obvious as soon as his symptoms really resolved and I saw him run normally for the first time ever. We started on sulfasalazine which worked for several months, but had to start methotrexate which is working wonderfully for us with no side effects. And we are weaning off pred now. I also worry about the side effects of these drugs, but the effects of not treating are worse.

I have no experience with Plaquenil, so I'm sorry that I can't comment on that, but maybe someone else here can. I think there are more common meds that people start with. If you are feeling uncomfortable with the Plaquenil, maybe you can ask your doc to discuss other possible drug options, and explain why he chose Plaquenil. It's important to ask all of your questions and be able to discuss all of your concerns with your doc. Good luck with it all,and I hope your son is feeling well soon.

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charlie'smom

Posted Monday, September 28, 2009 1:35 AM

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Last Login: Tuesday, October 20, 2009 11:38 PM
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Thanks so much for the encouragement, experience and support. We talked to out MD and are feeling much better about the Plaquenil. It is so supportive to know that others have gone through such similar situations as ours, as we have felt a bit lost through all of this. We started our son on the Plaquenil and are weaning off of the prednisone. Any other input anyone has about Plaquenil would be great. This site has been so helpful! Thanks again!

Charlie's mom

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Amanda Gwilt

Posted Sunday, October 11, 2009 7:56 AM

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Last Login: Sunday, October 11, 2009 7:44 AM
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I am not a parent, but I was diagnosed with JRA when I was 2 back in 1981. At that time all they could give me was baby aspirin. I remember my mom saying I was always in so much pain. She felt awful because there was nothing they could do. My regimen was hot baths, getting up at 5am for exercise and baby aspirin. My JRA was very aggressive and I had surgeries at age 5. I wish they had all these different meds available back then.

I know the list of side effects on these meds are scary, but sometimes the benefits outweigh the side effects. Your son's doctor will monitor him with blood tests and compare from test to test.

Good luck with everything.

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Martha Martin

Posted Sunday, October 18, 2009 2:27 PM

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Last Login: Friday, October 23, 2009 6:59 PM
Posts: 3, Visits: 12

Hello, this is the right forum for me to ask I hope. My daughter showed first symptoms in August this year. Swollen front of left foot and left thumb. By September she was limping and it had spread to her knees, hips, jaw, elbows, ankles and neck. Presently Lela is not attending school and can barely walk to the bathroom. She is on a strict allergy food diet and definitely no dairy or wheat. I am really scared of the memthatrexate and we have seen a lot of the inflammation down with the diet. More mobility in hands, all fingers and feet are a lot less swollen. Naturopath and clinical nutritionist are very encouraging. They call it and all autoimmune issues "Leaky Gut Syndrome". It makes since but, how much time do we have to see if all of this diet stuff works as far as joint damage is concerned? I can't seem to find any info on this.
I will also mention that she had a pretty high RA factor in her blood work. Help anybody have any suggestions. I don't know what to do.

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Juile

Posted Monday, October 19, 2009 8:47 AM

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Last Login: Wednesday, November 18, 2009 12:48 PM
Posts: 101, Visits: 134

Martha,

Have you seen a rhuematologist or are you only going the wholistic route? If your child's illness is spreading to new joints and he/she is having days where walking is difficult, PLEASE see a rhuemy asap. Methotrexate IS scary, but this disease is easier to get under control if you treat it early. If you wait too long, your child may have to suffer the pain much longer before getting it under control. Also, permanent joint damage, the need for surgeries, and having the disease progress into adulthood are far more frightening than the side effects from the drugs. Methotrexate is a drug that is used for other conditions as well as arthritis. Most of the side effects you read about apply to those people who have to take a very high dosage - like cancer patients. The dosage they give to children is very small and usually the only side effects felt are fatigue, nausia, and mouth soars.... and most children have no side effects at all. Please get a second opinion from a rheumy if you don't see significant improvements from diet soon. All parents struggle with this decision, you are not alone. This is a very confusing and frightening disease. Hang in there... I hope things improve for you soon.

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charlie'smom

Posted Monday, October 19, 2009 11:57 AM

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Last Login: Tuesday, October 20, 2009 11:38 PM
Posts: 4, Visits: 62

Wow, I know how you feel about the not know what to do! From my understanding, taking meds like Methotrexate, and the one my son is on, Plaquenil, are important to get the disease under control. If I am not mistaken, these meds can, and often are, used for a period of time with the ultimate goal being to eventually wean off. It sounds like you daughter has a rather aggressive form of this disease if it spread that fast into all of those joint and she has a high RH factor and positive labs. We too have stared diet changes at our house as well and are trying to test out what causes inflammation. I am fairly sure gluten is messing him up too. So, our plan is to keep him on the Plaquenil, keep the diet changes in place and then eventually wean him off of the meds and see if works. His doesn't seem as acute as your daughter's does however. I really think that getting the complete perspective from allopathic and naturopathic MDs is a good way to go. That's what we are doing. Just make sure that the MDs are supportive of each other's perspectives, or you might continue to feel confused. Diet changes, fish oil AND meds like methotrexate, hit this disease from an acute and wholistic perspective. A lot of kids take these meds and do really really well. Good luck to you and your daughter!

Charlie's mom

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Jennifer Haveman

Posted Friday, October 30, 2009 11:51 PM

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Last Login: Friday, October 30, 2009 11:32 PM
Posts: 17, Visits: 19

Hi. I am also newer to the board. My son who is 4 was diagnosed in 6/09. I have been through so much since the start of all of this. My son was diagnosed after he hurt his ankle. He really didn't do much to hurt it so I thought it was sprained. He refused to walk on his foot and I had to take him in right away. No sign of a break or fracture. After numerous complaints and going to the doctor a few times we did blood work and found his levels were a little off. The doctor said it could have been from being sick the first time I took him back into the doctor, and the next time he figured it was possible connective tissue disease. I got my referral and made it to the specialist 2 1/2 months later. Now my little one has an overlapping diagnosis. I know that there is no mistaking the redness and swelling when there is a flare up. I know it is confusing and very frustrating. My son is on MTX, Enbrel, Prednesone, Folic Acid, Previcid, and allergy medicines. I fear how the medicine will effect my little one everyday but would rather him get some relief. keep your head up.

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