Arthritis - Juvenile Support Group

The doctors told me that I might grow out of it too, but the sad realization is that, for most of us, this turns into adult rheumatoid arthritis into late adolescence.

I took naprosen for a while when I was younger, and now have resorted to Aleve to manage my pain. As much as it hurts her right now, it'll get easier with time. She will be able to handle the pain better as it becomes more of a norm for her.

A good thing to get into is water therapy. I haven't had that much experience with it, but I know that hot tubs help a lot. Another thing worth looking into would be yoga and meditation. I use meditation to handle most of my pain, and it helps immensely. The yoga helps to stretch out the muscles and joints, giving a gentle form of exercise.

Oh, and try to help her watch what she eats. She needs to be getting a lot of protein in her diet - beans, meat, even tofu. I love the Balance bars that are cookie dough flavored and there's a pretty good yogurt honey peanut one too. Try to avoid things with high levels of nitrates - hot dogs and other things like that. And watch out for MSG - I love Chinese food, but I definitely pay for it when I eat it.

And try getting her to drink Jello. I know it sounds gross, but you just prepare it normally, and instead of letting it harden in the fridge, you drink it. The cartilage from the animals that is used to make the gelatin helps your body to feel better. Or it might just be a psychosomatic thing with me, I don't know.

Good luck. If you need anything or have any questions feel free to write me okay?

I was diagnosis at age 2 in 1966, so I did not grow up with todays medications but from what you described many of the symptoms have not changed even though the treatments have. I have not know anyone who outgrew these symptoms or side effects but it is possible. It's probably best to proceed under the assumption that some will not go away but may change over time.

Continue to try everything, as accupuncture helped for some of my joint it had no effect on others. Vitamins and the natural pathic road did me no good and I went backwards.

During the growing years is the most important part in my opinion because it shapes how the child with view and care for her own condition later. She and you must not be afraid of pain. You, because to save the limbs from curling you can (must in my opinion) manually force then straight with PT done at home by you on each joint that needs it. be sure to soak the joint in warm water for 20 minutes first to loosen mucles. It hurts like the nothing else but she will keep her mobility, if you and her make it happen. Do not rely on just the medications because even under some of the best conditions that list will only get longer the older she gets and you also must balance the life of her liver against these drugs. If she is already taking methotrexate at this age you want to assist yourselves it in every way possible.

I take Humira injections weekly as well as methotrexate weekly and the side effects leave me sick 3-4 or more days a week. I have fought this disease for 42 years and I have lost the use of right elbow, left wrist, It's in my spine which is now collapsing and many more joints. I tell you because you must fight every day or the disease can win and the quality of life is unbearable for everybody.

I am so sorry she has this and the road ahead is tough, but she can beat this by staying on top of it, one joint at a time.

Good luck and be strong, write if you have any questions or need to vent.

I had the same trouble with methotrexate. My doctor told me to keep sticking with it, though. He said it can take up to 4 or 5 months to really get into your system and start working. It felt like forever, but it's finally kicked in and I'm so glad I stuck it out. Is your child taking the pill form or the shot? I started with the pills and they really didn't do much, so I have the shot now that I take once a week. It's really not bad once you get used to it. :)

I am sorry to hear about your struggles. I can relate very much. PLease be sure you have her seen by an Opthalmologist to ensure her eyes are not involved. It can cause blindness. I know when my daughter has flares in her eyes, she gets the headaches and eye pain.

Is your daughter taking anything for her stomach? My 4yr old is taking Zantac to help (most meds cause ulcers in the stomach that will cause pain after eating). She is currently on Mobic and sulfasalazine. Her rheumatologies wants her to go on methotrexate (sp?) but I am terrified of the possible side effects for her age.
Have you tried medical massage or cranio-sacral therapy? Both are helping my daughter; of course being a massage therapist - I am a little biased about these therapies - but massage really helps with keeping the muscles from contracting (which limits movement). The trick is to find a good therapist (not all therapists have a strong medical background or are well versed in arthritis). Yoga or meditation will help with self-esteem as well as with the physical body.

As to outgrowing this, her rheumatologist says this is a "for life" thing - it may flare and subside but not go. I am not convinced this is true - I am still new in this, but am convinced that multiple therapies is the answer - just have to find the right combination for my daughter.
- Michelle

Hi I'm a mom of a 4 year old with JRA. Her symptoms started 2 years ago. She was diagnosed 1 1/2 years ago. She is now on Remicade after trying just methotrexate and naproxin. This has cured her temporarily. Like everything else all meds you have to come to what works for you. This was not my first choice. I spent the last 2 years trying to find alternatives and will never give up looking for more natural ways to cure this...YES i do believe we can CURE this. I am now seeing a homeopathic Doc. from California that I love...He is so positive and I want to believe in him. I am here for support. This has been devastating for me. I hope that as parents we can support each other and help each other find more answers, there is just not enough known about this disease. Write back any time, I 'm new here. But just know we can get through this!!!

Nicole