Re: autistic traits/whitney

[Guest guest]

Whitney,

My daughter was diagnosed with non specific mito, through a muscle biopsy. Although she has had some regression lately, the cocktail has literaly saved her life. She initially was just on the Carnitor, due to carnitine defficiancy. This is what got everyone thinking mito. About 6 months later she had her muscle biopsy, along with a liver wedge biopsy. Before her cocktail was started she was on fast track to liver failure. Since starting on the cocktail about a year ago, she has had dramatic improvement. She has actually had three normal liver profiles over the last six months. (Though she will always have permanant damage done from before.) And she is developing quite well, except for speech. Right now she is starting her terrible two's. Wow I never thought we would be excited about the terrible two's.

I guess we will never know a specific route to how her mito disease will go, they have never seen anything like hers before. But, I understand she will always have some sort of problem going on. We deal with things like, asthma, gerd, migranes, speech delay, liver disease, eczema and new things are always popping up. I think she is currently on about 11 different medications, including cocktail, to help her with her mito related problems. Right now we are dealing with her gross motor skills declining (weird but fine motor is still good). We are praying it is just due to a growth spurt, and she will improve when she slows down a little. Just to be safe, she will have a MRI on Tuesday. I wish we knea for sure what to expect, but Dr. Cohen has reassured us that he does not think she has a fatal case, as long as things continue as they are. I hope I was able to help a little. Please feel free to email me again if you wish for more info.

[Guest guest]

,

I just had to laugh with understanding when you said "I never knew how excited we'd be about the terrible 2's". I remember feeling that way about my son Asher. His newly acquired ability to be oppositional was just so normal that I loved it.

Anne R