Seeking Other Moms Who Have a Child with Juvenile Arthritis

S.,
I am sorry to hear of your child's diagnosis.
The following web site may be helpful to you.
http://www.arthritistrust.com/
This web site is dedicated to the eradication of arthritis. I learned about it from Dr Phillip Ziblot a family practice doctor who, although he is an MD, he mostly practices alternative medicine. He is warm friendly and his appointments are 1-1.5 hours. He tells new patients to bring a recording device so that he can educate them on their health condition and the latest research. He is not always good at returning phone call but well worth calling twice if needed.
Good luck and please keep me posted.
R. George, CD(DONA), PCD(DONA)

1 mom found this helpful

Hi,

I don't have a child with JRA but my niece who is 3 was just diagnosed. She has had it for about a 1 1/2 but just got diagnosed. Most of her pain is in her knee. She won't walk some mornings. She had her knee aspirated and was diagnosed that way. I am also a nurse, if you have any questions. If you are looking to talk to someone you could look online for any groups in the area that are for families with members that have JRA.

M.

I'm sorry I don't know of any one but I can help find out information on it,I'll update you when I find something, was there something in particular you were asking or looking for? I'll try to get you any info I can.

I have a friend in Colorado whose daughter has this. If you would like for me to forward on your info e-mail me.

that is a fairly rare thing unfortunately, which is why i am replying to this. i do not have a child who has jra, but my soon to be hunsband does have it. he was diagnosed when he was 15. if there is something in particular you wanted to know, i would be more than happy to see if he would know about it, or know of any doctors, or therapies that did or didn't help etc. i understand that because he was quite a bit older when he was diagnosed that alot of his experience with it may be irrelevant. he is currently 24 so has been living with it for nine years. the only other recommendations i can make would be to possibly see dr. dennis santo. he is a chiropractic neurologist. i know that he does work on children, as young as infants, and that if he cannot help you, it is very likely that he will know someone who can. this is the chiropractor that i have been using and he has done wonders for me. my son has gone with me several times and the visits usually take a total of about 10 minutes from the time i get there to the time i leave, and that includes waiting room time. and the last suggestion i could make for treatment would be to find out about infant massage. massage is really good for arthritis it helps prevent swelling and inflammation and also relaxes the muscle and surrounding tissue thereby putting less stress on the joints. i am a massage therapist so i obviously have alot of faith in the things you can do with it, unfortunately i am not trained to do infant massage, which is a therapy administered by the parent, after being taught by a professional. i don't know of anywhere in the area where this service is provided, but if nothing else, you should be able to buy a book or possibly find some information on the internet, or maybe even ask your childs pediatrician or ask a physiatrist about this and other treatment options. i hope i have been able to point you in the right direction, in the event that i haven't answered what questions you may have. at any rate i hope something of it could be helpful.