Does Anyone Have a Child with Juvenile Rheumatoid Arthritis?

Updated on January 02, 2011
C.M. asks from Erie, CO
11 answers

My 5 yr old son has tested positive for the ANA blood test after having a swollen knee, which he was unable to straighten or put weight on for a week. Now he's back to his same old energetic self, running around. He has occasionally had pain in his knee since he was two, but it had never gotten swollen before. We have an appt with a pediatric rheumatologist in Jan.
Does anyone have experience with this? What might we be in for? Any medications or alternative solutions seem to help? This is breaking my heart! Thank you

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So What Happened?

We will be seeing the rheumatologist in Jan., so nothing has happened, yet. I just want to thank everyone for your responses. It's so nice to have the support and advice. I'll update when we know something. Thank you!

Our appt went well. He doesn't appear to have rheumatoid arthritis. The rheumatologist at Children's Hospital said the swelling in his knee is typically a once in a lifetime event! Very good news b/c my husband and I each have a sibling with the disease. Thank you to everyone for your care and support!

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L.B.

answers from Grand Junction on

Hello Cyndie,
I do not know of JRA except that it is an auto-immune disorder and many scietist and health care professionals believe that it is caused by the lack of vitamins and minerals. So if you can get him on a supplement that will can add it into his diet it may help.

My personal experience is to get a liquid supplement that the body can absorb better. (most pills can only be absorbed by 10-20% and are hard on the body)

if you would like some of my suggestions I would love to help.

Hope he can start feeling better permantly
lq

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B.H.

answers from Salt Lake City on

A friend of mine forwarded your request to me in hopes that I may offer some thoughts. First, it's great that he is back to his energetic self. At the age of 3 my daughter tested positive for ANA after having a swollen knee. She too could not put weight on it or straighten it. We were referred to a rheumatologist who diagnosed her as having JIA, also commonly know as JRA. She would have good days and bad days. When she was diagnosed it was mostly a wait and see how it develops. Shortly after she started having trouble with her other knee and elbow. We opted at the time to have steroid injections, which made a huge difference, she was like a completely different child. Although it helped, I do not recommend it unless in dire need. It is a short term solution with long term side effects. She was good for about three months until the steroid started to wear off, and more joints were starting to be influenced. I continually searched for alternatives, spending large amounts of time and money. Bottom line we had her tested for food sensitivities (not allergies). It basically told us what food created reactions in her body. Literally in one week after following this diet she was a completely different child. Even the blood work proved it. It took me nearly a year to find this method, we tried so many different things, the drugs the doctors recommend are very strong and only made her worse in other ways. I so recommend looking into this, it is also linked to helping adhd and autism. We follow her diet and she has been fantastic for nearly a year now. The only other thing with her being ANA positive is she has to have her eyes checks regular for iritis. I am happy to offer any more information you may be interested in, we have tried many, and some can offer day to day relief. Best wishes to you and your family.

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S.G.

answers from Phoenix on

Hi...just wondering what happened?

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K.M.

answers from Denver on

Hi,
I don't have a child with Juvenile RA but I have adult RA. Here are my recommendations:
* Get educated on the disease from a lot of different sources - people who have it, books, support groups, doctors, etc. They will each have different insight.
* Educate your son - help him understand what is happening and let he know in kid friendly terms.
* Find a support group for yourself (if you are interseted) and one for him - it will help him see that other local kids have this too and he is normal. Consider starting one if there isn't one.
* Teach him to use words to describe what he is feeling - both physically and emotionally. Check in with him regularly to talk about what he is currently feeling.
* Teach him how to speak about his RA to others.
* Help him get intersted in activites that he can do even when his RA is bothering him - perhaps board games, computers, swimming, etc.
* Get a doctor that specializes in the Juvenile form of RA if you can. If you aren't happy with an RA doctor, look for another one. Treatment is too important to settle on a mediocre doctor.
Good luck.

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M.S.

answers from Denver on

I don't have a child w/ JRA, but my hubby was diagnosed with it when he was about 5. He is now almost 40 and has no RA symptoms other than achy joints when he gets sick. He does get sick a little more often that average because RA is an auto-imune disease and he is, and forever will be, imuno-comprimised.

When he was little (quite a few years ago, I'm sure that treatments are much better now) he frequently ran high fevers and caught just about every cold and bug he could. His dad was one of the chemists that developed ibuprophen and it literally saved his life. I'm sure that your rheumatoligist will be able to give you some great advice for taking care of him, though. I asked my hubby if he had any advice and he said that when your son does get sick with a cold, etc., expect that his joints, and especially the knee that was swollen, will ache.

I guess what I'm trying to say is that hopefully he'll grow out of the JRA and lead a healthy, productive life. Good luck!!

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K.B.

answers from Denver on

my husband is on the board for the local chapteer of the Arthritis Foundation. This is a good place for support and information. They do a lot of fundraising and bring awareness to the public that this affects not only adults but children as well. At least you can find people within the foundation to talk to and share your concerns...K.

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K.W.

answers from Boise on

My sister was born with JRA and diagnosed at 3 years old. It progressed and is one of the most involved cases most doctors have seen. The biggest downside of JRA is that she has to see rhumetoligists who generally specialize in geriatrics; JRA is different from arthritis which appears later in life. The great news is that she is now 34, has a BS and MS in Biology and supports herself. Life is not easy for her, but she has a great attitude. Please PM me so I can put you into contact with her. She will have some great insight that no one else will. My own mother can also give you some good advice. I am happy to connect you with these people.

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S.T.

answers from Denver on

Hi Cyndie,

Call the Arthritis Foundation. They have lots of education programs and support groups. If you don't get enough responses, please let me know and I'll see if a person I know in my Mom's group would be willing to email or chat with you.

I'd be happy to email you some information about some natural - no medication - alternatives and technologies. I've had great success with my osteoarthritis. Rheumatoid is a bit tricker, but I've helped people with that as well. I've seen so many life changing things in the last 18 months.

Hang in there. You are definitely on a journey and the more info you have, the better.

Take care,
S.

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M.S.

answers from Salt Lake City on

My daughter was diagnosed with JRA at the age of 8 years old. It started with pain in her feet, so we went to Pediatrician, Podiatrist, Orthopedic, Neurologist, etc. By a miracle chance we found Dr. John Bohnsack at Primary Children's. He is a JRA doctor who has been in the Pediatric Arthritis field for many years. He was a great doctor. I would recommend seeing him if you can. It took us about 2 years to get he diagnosed. When she was diagnosed he started her on a shot called Methotrexate. If she responded well to that then he would stay at that, but we had to add another shot of Enbrel. The two drugs together worked amazing for her. So far there are no problems. She has a lot more grip in her hands, no pain when she walks and she can finally sit "indian style" on the floor - none of which she could do at diagnosis.
I hope this helps.
M.

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J.M.

answers from Provo on

Lately I have been suffering with extreme and intense pain in one of my knees. It has gotten so bad I have had to crawl up the stairs. I'm only 32. I also have had minor pain in my other knee and toes. I have dealt with the knee pain in a lesser degree since high school. It's only now that I am able to control it. I stay away from dairy and other forms of calcium intake that don't have natural silica in them. Your body needs natural silica in order to absorb and reform calcium from a mineral state into a biological one (your bones). If your body is getting too much calcium and can't process it, it will store it in places that are genetically weak. If a person is genetically prone to arthritis, stones, bone spurs, etc. that is where the unused calcium will build up.

Natural silica is only found in vegetables that also have calcium, and in the comparative ratio that calcium is found. There is far more calcium in green vegetables than others so there is far more natural silica in them as well.

I also drink an herbal tea called Calc-tea. This is very high in both calcium and natural silica. If I drink this every day I don't have a problem. If I miss a day I get an ache. If I miss two or three I get real pain. It took about two weeks of me drinking two cups/day in order to see relief. Now I drink one cup/day to maintain my joints. Perhaps you could give this a try. The tea is made by the Dr. Christopher company and may be found at health food stores or online as well. I usually order from herbsfirst.com. If you can't find it I could give you the list of individual herbs and you can put them all together yourself.

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J.P.

answers from Denver on

Cyndie--
I have a great natural doc that I'm positive can help. He got my child through some very nasty stuff that even specialists couldn't figure out. Happy to share his name and number with you if you are interested in going that route. My guess? Allergies. When the body is over-reacting to it's environment it puts a great deal of stress on the liver. When the liver goes it often results in pain such as this. I could be wrong, though. Other symptoms would be a "target" rash around the anus, eczema and rashes, a consistently stuffy nose or cough, and a child who doesn't sleep well (or any combination).
Good luck!
J.

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