Re: Kerry/Dawn - secondary FOD

[Guest guest]

Anne,

They also look like they have glutaric aciduria II now - is that

also an FOD. Was told yesterday this this too is secondary.

***That's very interesting. Before we even heard of mito they

thought had GAII and we went down that road and then they

said she had GAIII (benign) then Cohen said it was Glutraic spilling

as a result he thought of the mito (but wasn't sure how.)

I worry so much how this will show up in Molly. Right now her labs

are pretty unremarkalbe but her fatigue is extreme (Natowicz is

saying it is like CFS). I am very frustred. They say hers won't be

as bad since presented at birth. But then I look at your

family. Your boys presented diferently right?Theres just no telling.

has more " problems " but seems better and Molly has less

documeted issues and seems sicker. Does that make sense? I can't get

anyone to listen. Of course, especially her father.

thanks for the help, Dawn

[Guest guest]

Dawn, that makes a lot of sense -that Molly could seem sicker with less problems. like Sam seems to have a lot of secondary issues as a consequence of the mito. It all can be very dramatic with Sam - and it has required care on the level of an ICU. 4 continuous drips for his heart, factor drip for his bleeding and blood products around the clock, 40 medications a day - most 4 times/day, Iv antibiotics every day all day, huge spleen, liver dysfunction, autonomic seizures...the list goes on and on (Not that I would ever describe him like this as to me he is simply and wonderfully SAM). With zach it is all so much more subtle. The secondary issues are there but milder, quieter. He requires many medications but it all seems so much more controllable. YET, I feel like he is fading away in many many ways. For him, it is the primary energy issue that seems so loud in our lives. Since January he has had a rapidly progressive loss in energy affecting his ability to walk, climb stairs, use his hands, stay awake, etc. Sam is like the energizer bunny a lot of the day - never stops talking and thinking and living as fully as he can despite all the life threatening issues he has. Sometimes I look at Zach and I just hurt -I worry so much for him even though on the surface he seems to be healthier. I have talked with our doctor about this and he shares my concern that the primary issue, while not as dramatic, does seem to be eeking the energy our of Zach. So yes I certainly do understand. I don't think it is easily understood though unless someone spends a lot of time with the person and really listens. Our therapists and doctor see it as do some of the school staff that have known Zach for many years. Anne_________________________________________ Message: 18 Date: Sat, 23 Oct 2004 16:31:47 -0000 Subject: Re: Kerry/Dawn - secondary FODI worry so much how this will show up in Molly. Right now her labs are pretty unremarkable but her fatigue is extreme (Natowicz is saying it is like CFS). I am very frustred. They say hers won't be as bad since presented at birth. But then I look at your family. Your boys presented diferently right?Theres just no telling. has more "problems" but seems better and Molly has less documeted issues and seems sicker. Does that make sense? I can't get anyone to listen. Of course, especially her father. thanks for the help, Dawn