[Abdulina]

Hello everyone. I have a friend who has a bio daughter that is sick and they can't quite figure things out. I know some of you from across the country have info and such. Maybe you know of a friend of a friend who has the same disorder. You just never know. This is why I'm writing. I'll post what she wrote leaving her daughter's name out. Here goes:

our daughter XXXX was diagnosed with a metabolic disorder of unknown origin when she was 4 months and we are starting to see regression in her skills. We are very concerned because she is losing strength and stamina quickly. At 6 years old she is 34lbs. (her 2 year old sister weighs more! All we are told is that she is missing an enzyme that breaks down sugars but they can't pinpoint which one because there are so many enzymes in the body. We are asking everyone to talk with family and friends to see if anyone knows of a good metabolic specialist.

Obviously, most of you won't know of a metabolic specialist in NC, but maybe some of you know of someone w/ something similiar. If so, could you please write me so I could pas son information. She is very concerned about her daughter.

I do hope this was okay to post. I know it wasn't adoption related, hence, why I put OT in the topic. If it's not appropriate, please delete. Just trying to see if anyone may have ideas for my friend. Our kids are on the same special needs T-ball team. Cuts close to home if you know what I mean. Thanks in advance.

Take care,

[amyfk]

Unfortunately I dont have any ideas.
I would suggest your friend go to her local library and look up the nations best doctors in the field she's interested in. To me it sounds like the child needs to be seen by a specialist in one of those big, renowned, big city teaching hospitals. I wish them the best.
Amy K, NJ

[aimeemk]

Abdulina,

My friend has a daughter with MMA which is a metabolic disorder. She was diagnosed before 1 month of age. She does not break down protein. I know she went to Texas Children's in HOuston and I will ask her the name of geneticist that she took her daughter to.

[Mykidsmom]

I sent a PM