update on Lorelei.

Man I wish i could say they came up with something at the new Dr today. He said whatever she has is very rare (duhh tell us something we don't know please) he suggested one fatal desease that is very rare but my sister really feels it is a stretch. He also suggested it was a different type of the aging desease that they had suggested last month. I don't know it is all stupid! I know they are not god I understand that. Just answers please!!!! We are so tired of being in the dark. And this little girl needs to put her weight back on.

I work in a hospital and I have the a lot of respect for the docs and nurses who work there - but no one knows a child like a parent and no one else is as invested in that childs life and health.

I'd suggest mom or dad (or even a good auntie) start doing a lot of research about her symptoms. There's an amazing array of data out on the internet these days. If there's a rare disease, there's probably a web page about someone who has it.

I've found a database that might be a place to get started. It's a rare disease database - you can use the search function to put in symptoms (just be sure to select the "all words" or "exact phrase" button or you'll come up with about ever disease in the database...) and see if there's anything there that sounds familiar.

http://www.madisonsfoundation.org/

Well it turns out it is going to take 6 to 8 weeks to get the results back from a test we think is going to come back with nothing!. In the mean time she is improving just a tiny bit. But a tiny bit is very big in our eye's. She seems to be very slowly gaining back some of the weight she has lost. But again it is slow. But I am still very grateful for it. She is happy and enjoying all her new birthday toys she got this month. They are having a big birthday party for her at a park tomorrow. I would be there but I am sick with a cold so i had to back out. They don't want her to be exposed to anyone sick right now. I totally understand! I would like to post a picture of her and what she looks like now but i want all of you to remeber her like in the photo's I posted from before she got sick. My thought is if you all keep thinking of her in that state she will get back to that. That's it for now. Just wanted to update all of you who have been keeping us in your thoughts and prayer's. Don't stop!

Still waiting on the last test by the way. there is just a little bit of change here and there. But she is not worse. But not but a bit better. But better then nothing at all.

Warm thoughts from Middle Earth still coming your way... I know 6 weeks sounds like a long time, but it will pass and hopefully you will all have a useful answer for the trouble of the wait...

Awhi awhi
Rave

Sending good thoughts your way! I don't usually check in on the off-topic forum, but this thread caught my eye. Sorry your niece is so ill. That is very scary...

Brandi, has your niece been seen by a pediatric gastroenterologist? If she's having trouble with absorption, maybe the GI doc can pinpoint the problem. :confused:

Quote:

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Originally Posted by sundial

Brandi, has your niece been seen by a pediatric gastroenterologist? If she's having trouble with absorption, maybe the GI doc can pinpoint the problem. :confused:

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I will ask my sister. They have seen so many Doc's i can not remember at the top of my head at this point. But I will ask. Just imed her about it. I will post back when i get an answer.

Ok. I figure your niece has seen everyone short of the Pope.

Apologies if this is a dumb question, but I suppose juvenile diabetes was the first thing they eliminated?

Best wishes for her.