Re: Myers family update (long)

[Guest guest]

Dawn,

I am glad that you found some answers. That has to be a relief,

but of course not in the form that you probably wanted. Know that I will

be thinking of you and your family. Please keep us updated.

Smiles and hugs,

a

On Thu, 23 Sep 2004 01:57:33 -0000 " thefourofus03 "

thefourofus03@...> writes:

Hello all,

I took Drew and Molly today for their much-anticipated evaluation

for a Mitochondrial disorder at the Cleveland Clinic with Dr.

Natowicz. When we got there we were seen by his fellow for an hour

and asked for an extensive history, which of course I had prepared

ahead of time. She did a thorough neurological examination. When she

had completed this she left to go discuss her findings with Dr.

Natowicz. About an hour later they returned to the exam room where

we had been trying to patiently wait. He had a few more questions

for Drew about his blood sugars issues. He also conducted a small

examination of the children. He noticed that Molly has moon shaped

toe nails (like he pointed out, who he hadn't seen in over a

year) which he said is indicative of a genetic anemia.

After much discussion he said that originally we had two theories

originally on . One was that she had an iron metabolism

problem with a secondary Mitochondrial Disorder and the second one

was that she had a Mitochondrial disorder with a secondary

Sideroblastic anemia. He said that after meeting Drew and Molly,

reviewing their labs, history and examining them he believes that we

all have a Mitochondrial disorder.

We are going back in the morning to the lab at the Clinic for some

fasting labs but then he will begin treatment for both of them. No

further evaluation will be needed.

Treatment for the children will probably include Coq10, Carnitor, B

vitamins, iron (for Molly), Cornstarch at bedtime (a complex

carbohydrate that will help to keep blood sugars steady throughout

the night). We are testing Drew for some additional blood sugars

issues so additional treatments may be needed for him in regards to

that.

We do not know where this disease will lead any of us in our family.

was very severe when she was two yrs. old. She has done

amazingly well with the aggressive treatment that she has received.

I am hoping that now that we have diagnosed Molly, Drew and myself

with this disease, we can begin treatment and feel better again. The

stress that we have all gone through in the past year with the

divorce has been very difficult and I believe has caused some

physical decline in each of us. I am happy that we at least know

what it is that we have and can treat it to the best of our ability,

which we will.

I will update as we learn more. Love to all, Dawn Myers

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