Anyone have dc w/rheumatoid arthritis?

[~FireFly~]

Hello everybody! I just popped in to check on things here (there) and found a new board and format (imagine that!)

Does anyone have a child w/rhuematoid arthritis? I ask b/c my ds17 might have RA. We're (he's) going through some of the testing next week and it looks like, w/his symptoms, that it probably is RA. So, I'm trying to find out as much as I can to help him. I know it runs in my side of the family and it's hereditary. (sigh)

If you have any info. on treatment, advice...anything, please let me know.

~Stephanie

[JudoMom]

Hello everybody! I just popped in to check on things here (there) and found a new board and format (imagine that!)

Does anyone have a child w/rhuematoid arthritis? I ask b/c my ds17 might have RA. We're (he's) going through some of the testing next week and it looks like, w/his symptoms, that it probably is RA. So, I'm trying to find out as much as I can to help him. I know it runs in my side of the family and it's hereditary. (sigh)

If you have any info. on treatment, advice...anything, please let me know.

~Stephanie

a form of JRA. There are several treatment options, depending on severity. Are you seeing a rheumatologist?

[~FireFly~]

Not yet. It's all new to us. He'll go through the tests next week to confirm what his ped. thinks and then we'll go from there. I guess I'd better start looking for a rheumatologist, huh? What should I look for. questions I should ask?

~S

[JudoMom]

look for a rheumatologist. There isn't a definitive test for arthritis. There are various markers that may or may not present themselves. Ds5 is a good example--it took us 2 years to get a dx because his markers are low, even though all of the symptoms are there. So you might want to consider seeing a rheumatologist even if the blood work comes back without showing the elevations that your pediatrician expects.

How is everything else in your life?

[kdeno]

It started when I was 13. I had a very sudden onset. Thank God, I have been good for a few years. I was a test patient for Celebrex.
Please PM me with more questions, I am time limited this second (like all of us :-)
K

[Claire]

Not a dc, but a good friend was diagnosed with RA after the birth of her third child, about 18 years ago. The doctors recommended medication that she was unwilling to take (rare side effect of blindness), so she decided to try other approaches first. She found a naturopathic doctor who put her on an elimination diet. Within a week all of her symptoms were gone. She has been able to control her RA ever since by watching her diet. There are many things that seem to be triggers for her. If she drinks half a cup of coffee, for example, her symptoms come back the next day.

In the last two years she has been plagued by iritis (uveitis), a rare eye problem associated with auto-immune disorders. She plans to see a doctor who specializes in both uveitis and auto-immune disorders soon, plus she is looking into the American Academy for Advancement in Medicine (http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.2071557/k.7C1E/ACAM_Homepage.htm). Apparently this is an organization which is looking seriously at alternative approaches to treatment for disorders.

[Dawn]

Not a child, but my dh has it.

There is now a definative test for RA. It's been out for a few years.

The Road Back (http://www.roadback.org/index.cfm/fuseaction/home.main.html) is a really good place to start. There are a lot of varying views on what causes RA. From the research we've done, we suspect it's mainly caused by a mycoplasma. You'll find a lot of great info on this site.

Feel free to pm me.

[~FireFly~]

Thanks for the link. I think it will be helpful. I'm trying to work this new format...it's blowing my mind:O)
~Stephanie

[Doran]

Sorry I can't help, but I wanted to offer you big hugs, and a big WELCOME! I've missed seeing you here. Hope you are able to find help and answers for your son quickly. I'll keep him in my thoughts.

Doran

[JudoMom]

Not a child, but my dh has it.

There is now a definative test for RA. It's been out for a few years.

The Road Back (http://www.roadback.org/index.cfm/fuseaction/home.main.html) is a really good place to start. There are a lot of varying views on what causes RA. From the research we've done, we suspect it's mainly caused by a mycoplasma. You'll find a lot of great info on this site.

Feel free to pm me.

what test are you referring to?

Dh has been diagnosed with ankylosing spondylitis, and ds5 has systemic onset juvenile arthritis, so we've been to our fair share of rheumatologists and other docs, but have never heard of a definitive test.

[Michele in New Zealand]

I don't have a child with RA but I do have it myself. I was diagnosed when I was 13 and I am 40 now.

I have found that as far as treatment goes, the best thing for me was to stay away from "strong" meds. I take NSAIDS, DMARDS and Losec for my stomach to prevent damage from the other meds. I have never taken steroids or anything else and consider myself very blessed. For me, most of the RA drugs will give me more problems than I already have. I was very careful right from the start to eat well, exercise, take vitamins and most important of all, have a positive attitude.

I don't let RA define who I am. It is not my identity. That is what has helped the most. Where the attention goes, the energy flows, and I am not willing for peoples energies to be focussed on that part of me. My parents made sure I contributed to the household chores and never allowed me to complain about anything. This certainly helped as well.

I see a natural practitioner once a month who does massage and Reiki. I have recently given up eating animal products (vegan), sugar, coffee and gluten and it has made a profound difference. (The latest research shows that a gluten free, vegan diet reduces symptoms considerably.) Some people find that eating a totally raw vegan diet helps, but that is not for me. The diet at Hallejuah Acres might be appropriate for your son. My home is chemical free and we try and eat as organically as possible.

Best of luck for your son! :) Please remember that is not the end of the world. Don't take on people's negativity, don't let it define him. Treat him just the same as you always have. Make sure he contributes in spite of any pain he may be in, it is really important that he feels needed by his family expecially after his diagnosis.

Feel free to PM me.

Michele.

[Dawn]

what test are you referring to?

Dh has been diagnosed with ankylosing spondylitis, and ds5 has systemic onset juvenile arthritis, so we've been to our fair share of rheumatologists and other docs, but have never heard of a definitive test.

It's called the citrulline antibody blood test.

http://www.medicinenet.com/citrulline_antibody/article.htm
http://www.medicinenet.com/rheumatoid_arthritis/page3.htm#4howisrad

See 4) on this article also:
http://www.arthritis.org/top-10-2006-ru.php

HTH!

[ELaurie]

but my doctor recommended this book for my aunt. He respects the author's work, and has done some training with him.

Overcoming Arthritis (http://www.drbrownstein.com/singleproduct.asp?id=792)

Hope you find the answers you are seeking.

[JudoMom]

It's called the citrulline antibody blood test.

http://www.medicinenet.com/citrulline_antibody/article.htm
http://www.medicinenet.com/rheumatoid_arthritis/page3.htm#4howisrad

See 4) on this article also:
http://www.arthritis.org/top-10-2006-ru.php

HTH!

it still doesn't look like a definitive test? It looks like it's similar to the ANA in that it's present in many/most?

I'll have to check into this more, though and talk with ds5's ped. rheumatologist about it. Ds5 seems to have it be his goal in life to be a medical anomaly :(.

[Dawn]

it still doesn't look like a definitive test? It looks like it's similar to the ANA in that it's present in many/most?

I'll have to check into this more, though and talk with ds5's ped. rheumatologist about it. Ds5 seems to have it be his goal in life to be a medical anomaly :(.

Our rheumie felt it was definative when the cab number is over a specific amount - we pressed her on it to be sure. Hubbies was quite high, and he did not test postive for the RA test or sed rate.

In one respect we wish it weren't so accurate - it would be nice if he didn't have RA.