please keep the prayer's going for Lorelei!

If you haven't read my latest update in the "Very good new's " post you all should know she is not out of the woods yet.
It is so up and down emotion wise! She is so terribly thin. Her wieght loss is just not good for such a little one. And she IS eating. Even more now that she is on steroids. I am keeping finger's crossed they bulk her up. The last on her by a Dr is they think (so sick of the guessing before the testing) she might have a rapid aging desease called pogeria. This is just from looking at her the Dr is thinking this. But he is not an expert in this so they are going to see another Dr about this on Tuesday this coming week. I am not getting worked up over this.
So please keep the prayer's and good thoughts going.
Sorry this is not the post I would like to do about her. None of you have to comment on this post I know she is in your thoughts and that is enough.

All of you continue to be in my prayers, Brandi. Thanks for the update.

She, (and your family) are in my thoughts and prayers!!!



karen

Karen!!! Where have you been?
Sorry for the drift, but how are you doing?

the baby seems to be doing ok on the steroids. She is drinking and peeing a lot more. Does anyone know if this is normal? She put a call into the Dr's but they have not called her back yet.
Tomorrow they go see a new Dr to hopefully rule out Progeria. Please let this not be it!
Children w/ this desease don't live very long. I still don't think this is what she has. But I am still keeping my finger's crossed it is not.

When I was on prednisone, I ate, drank and peed for days. I believe it's normal.

Quote:

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Originally Posted by snapdragen

When I was on prednisone, I ate, drank and peed for days. I believe it's normal.

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thank you snap! I will pass it on to my sis.

Ok she does not have this aging disease. We are grateful for that! But the new Dr said the same thing. That they have never seen anything like this. it is basically like something is eating all her fat.
Good news is she has gained a little over a pound in like 4 days from the steroids. Unless she is retaining water? But my sister says she pee's like crazy. So nothing is really being retained.
it is just all to strange!

I've seen several episodes of Mystery Diagnosis on Discovery Health in which a child will end up with a rare metabolic disease that causes odd symptoms, including unexplained weight loss. Sometimes just a dietary change or some form of supplementation can reverse all of it -- but you have to have the correct diagnosis first.

Paging Dr. House....

I hope your family will have answers very soon. This has got to be agonizing to go through.

Emily

Quote:

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Originally Posted by emily_in_nc

I've seen several episodes of Mystery Diagnosis on Discovery Health in which a child will end up with a rare metabolic disease that causes odd symptoms, including unexplained weight loss. Sometimes just a dietary change or some form of supplementation can reverse all of it -- but you have to have the correct diagnosis first.

Paging Dr. House....

I hope your family will have answers very soon. This has got to be agonizing to go through.

Emily

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The next step will be with a metabolic Dr. Interesting you brought that up.