Re: sycrosis arthritus

March 3, 2009

Hi, . Welcome to the group. I'm very sorry that you and your son

are having problems.

It might help to visit a group for parents of children with arthritis

like this one:

juvenile arthritis/

Let us know about your blood test results and what your physician says

about them.

Not an MD

On Mon, Mar 2, 2009 at 11:19 PM, syrcarthritus620

<angelacolboch@...> wrote:

> Hi,I'm I'm new to the group my 14yr old son and I have been

> sick for about 3yr. His has been worse than mine, it took us 21/2 yr

> and about 15 dif dr before we got a diognosis in my sons case i've

> been told he is in major deprresion, he is making it up,chronic

> fatique and many other laughable explanations for his pain.I finally

> got to the end of my rope and cryed out to God like never before for

> help with him., I also tried every posible avenue to get help, thru a

> new rhumu dr he was finally diagnosed with three dif types arthritus;

> schlorosis,idopathic, and one other type this was 1 month ago and I

> haven't saw any good results from his treatment yet. Needless to say

> I'm dissapointed ,but at the same time still hopeful. As for myself I

> get my blooodwork back tommorrow and am hopeful. Does anyone out ther

> have any advise on juvinile arthritus ;what to do , how to cope? any

> help would be greatly appreciated!!!!

March 3, 2009

Hi ,

I was diagnosed with Juvenile Rheumatoid Arthritis at 4. Today it is

being called ideopathic, because they believe it can behave

differently from RA.

Please go to the Arthritis Foundation's JA site:

http://www.arthritis.org/ja-alliance-main.php

They have all the info you need, plus brochures, advice on how to get

support at school, finding your local Arthritis Foundation office for

help locally, info on the national Juvenile Arthritis conference,and

an on-line support group for parents (which I haven't been able to

find). It is a huge site and you could spend hours there-you might

want to! There's also a link for kids to look at:

http://www.arthritis.org/ja-web-resources-for-children.php

I recently wrote an article on this topic and the coolest thing I

learned about was Arthritis Summer Camps for kids and teens. They have

one where I live in Michigan. Contact your local office to see if they

have one. Not only do kids get to hang out with other kids who have

the disease, but they learn about medications and how to take care of

themselves. I never met another child with JA and would have loved

this camp!

Here's my advice.

1) find a pediatric rheumatologist!!!!! There are a limited number

nationally, so I do hope you can find one -- they know what to do,

2) Get him on meds! Kids today have far less damage to their joints

because they know how to treat it and have far better drugs than 40

years ago (the Director of Pediatric Rheumatology at the University of

Michigan told me that Methotrexate ended kids in wheel chairs!),

3) If they talk about expensive meds, look into state govt support for

kids with serious illness, also if they talk Enbrel, there is a

program that pays for everything over $75 per month, which is a relief

as Enbrel costs 1400/month.

4) get him an electronic toothbrush! I think my wrist problems

contributed to lots of tooth decay as I couldn't brush properly.

Let me know if you have more questions. I may be able to help.

Best wishes,

Sharon

Detroit

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