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Daughter having Juvenile rheumatoid arthritis

  • By Manicha

    Hi, I am making this post for my daughter. She was diagnosed with juvenile rheumatoid arthritis (JRA) at the age of 8. One morning, when I woke up, I found her struggling to move her feet and I thought she hurt herself. I took her to a doctor and the doctor confirmed that she has got a flat foot.
    She is on medication right now. It started with Enbrel, but it didn’t seem to help. Now, she is taking Methotrexate and Humira.
    My husband is planning to make her undergo a chiropractic treatment ( http://www.oakvillechiropractic.com/services/chiropractic/what-is-chiropractic/ ) from Burlington. Is this treatment effective? How serious is juvenile rheumatoid arthritis? Is JRA curable? Please give some genuine replies and suggestions. Thanks in advance.

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  • By Richard Faust Moderator

    So Sorry to hear about your daughter’s diagnosis Manicha, but know that it is possible for her to have a full and happy life. My wife, Kelly Mack (a contributor here), was diagnosed with JRA at two. In this article she writes about things she would like to tell herself as a child – things like how strong and principled she will be and how “Life will be full of wonderful surprises:” https://rheumatoidarthritis.net/living/talking/.

    In her lifetime, Kelly has seen treatments for RA advance considerably. In this article she writes about the evolution of these treatments: https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments/. Just imagine the advances that might occur in your daughter’s lifetime.

    Finally, you mention a treatment that your husband is interested in. While I cannot comment on that specific treatment, this article from our editorial team looks at alternative therapies for RA: https://rheumatoidarthritis.net/alternatives-therapies/.

    Please know that you are always welcome here for information and support. This community will be here for you and your daughter. Keep us posted on how your daughter and the family is doing. Best, Richard (RheumatoidArthritis.net Team)

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  • By kpal

    Hello , I was diagnosed with JRA at the age of 12 , my parents knew nothing about chiropractic care , nor did any of my rheumatologists having said that , I suffered for years as a young child with JRA , and finally when I was 28 years old I found out how chiropractic care could help me , I went all those years having so much pain , and since the age of28 I have been getting adjusted , I highly recommend that you have your daughter under chiropractic care I wish I knew about it before and I would be better off now as a 46 year old if I had been getting adjusted since I was little , today I could hardly walk , my low back and hips and knees were killing me , plus it’s a snowy rainy day here where I live , I got adjusted and immediately after my pain was gone in all of those areas , I can’t speak highly enough about chiropractic care ! Plus when you have RA you want your body working to it’s best ability , and getting good chiropractic care can enable her to have that I hope this help I hope your little one gets feeling better very soon!

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  • By KinseyAnn700

    Hello,

    I was diagnosed at 12, I’m now 23 and have relatively low flare ups. The dream was that my RA would go into remission, meaning that it would go into a sort of hibernation until I was 70 or 80 years old. No such luck for me yet.

    I was also put on the meth and Humira combo and it worked for 3-4 years. One thing you should know is that since she is so young she may grow a tolerance to it, I’m now on a biologic called Orencia.

    PT and chiropractic care will help. The best thing is that she is active when her inflammation levels are low and that she take it easy with stretching when they are elevated. Get her a few pairs of really good tennis shoes, if you go on vacation take into account how long you may be standing or walking. I noticed extreme fatigue during the first 4-5 years after I was diagnosed and still struggle as an adult. I nearly failed 8th grade because I would be so tired I’d tell my mom I was sick so that I could go back to bed.

    Another thing you may notice is depression and weightloss. Since I was so young and it took years for me to get diagnosed, I got really depressed and dangerously skinny. I had completely lost my appetite. Research the ways that kids show their depression because it’s quite different and more subtle compared to adults.

    Research is key, my mom could probably be a rheumatologist. Subscribe to Arthritis Today, keep up on new medications, because believe it or not, sometimes your doctors don’t have time to read the newest journals. Humira had just come out when I was diagnosed and my mom brought the medication up to my doctor, he hadn’t even studied it yet.

    Keep a journal of each day, what she took and when, how she felt; this will help you narrow down what helps and what doesn’t, kids can’t remember. Research what long term side effects may come with her medications. Research Pleurisy and Pericarditis.

    Repetitively teach her to wash her hands, not to put her hands in her mouth, and disinfect her room and bathroom. This will help her a ton when she’s an adult and is immuno-compromised.

    I’m really sorry that you and your family are going through this. Just know that you yourself will go through a lot of emotional pain as well. Nothing is worse than seeing your daughter suffer the ways that she will. I wish you and your daughter the best of luck.

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