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Joined: Nov 2001
Posts: 18,147
Likes: 5
Joined: Nov 2001
Posts: 18,147
Likes: 5
Ella, I'm so sad little Maddie is still in such pain. I wish I could advise you, but I'm not a parent. I can imagine how frightening the potential side effects are to a parent, tho. I did a quick google search and found that the most recent study done on children with Juvenile Arthritis of some kind was in 2004, wherein it appeared that side effects were no more prevalent in children on Etanercept than on adults. However, in another study, on children with Psoriasis being treated with Etanercept, in those treated with Etanercept, "...researchers found that 57% of the 211 child subjects experienced at least a 75% reduction in their symptoms and an improved quality of life. Only 11% of children who received a placebo had the same result."

I don't know if that eases your mind or not, just trying to share info. I know that you must be desperate to help Maddie feel better. hugss

Warm hugs,


A life lived in fear is a life half lived.
"Strictly Ballroom"

Joined: Jul 2009
Posts: 296
Joined: Jul 2009
Posts: 296
The normal course of these spondy diseases are to come and go in and out of remission.

Do you have an excellent pediatric rheumy? That is where you should go for answers to your fears and questions about meds for her.

There is an increase of cancers, heart problems, cardiovascular problems, irrepairable tendons and muscles, bone deformitys etc if you don't use something to get down her inflammation.

I used to be someone who feared the future - was always "what iffing". My best friend taught me to do what is right for today because you just don't know how the future's going to turn out. It has made my life alot easier.

So I understand the "what if I give Maddie a biological drug and at age 17 she gets cancer...." OR "what if I don't treat Maddie with modern westerinized medicine and she can't walk at age 17" I think this is something like what you are struggling with in your head - I think you should pose this to a ped rheumy - they are the ones qualified and with the experience of numerous patients to tell you which scenario is MORE likely to happen, then you can make the best decision you can make TODAY and move forward.

Good Luck to you both!

Joined: Sep 2001
Posts: 6,237
Joined: Sep 2001
Posts: 6,237
Just wanted to offer my best wishes. I can't imagine the courage it takes for you as a Mom of a 7 year old to make all the decisions you need to without knowing how a course of treatment or diet could effect such a young body.

I offer this only in the way of some comfort. My AS started bery young also.. Pains by 8 and a fullout flare leading to fusion commenced at 13. I took all the wrong things and as a male probably more prone to fusion.

That was 3 decades ago. The thing is my mother at that very young point in my life took me everywhere and was later diagnosed with AS. In any event my respect and the bond I have with her for all the caring work she and tiem she invested was of way more benefit in my life than AS was ever a detriment. Know that you are succeeding even when you don't feel it and your child will see it and b ehealed by your efforts if not physically ...healed in more improtant ways.

Last edited by stevec; 09/20/10 06:04 PM.

L-R: Julianna, Jamie, Diane and Tonimarie

stevec-they also serve who stand and wait
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