Myers family update (long)

[Guest guest]

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

[Guest guest]

Dear Dawn, Just sending lots of support to you. I have experienced

this with two kids, not three, but it is something else. It confirms

your fears yet then you can know what you're dealing with. A mixed

blessing. I'm glad there's someone who takes the other kids

seriously, too. Let's pray that Molly can feel better and that Drew

can improve, too. I really hope they can help you (or your neuro).

The mommy has to be strong. Thinking of you guys.. Cindy

Dawn wrote: >

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

> for a Mitochondrial disorder at the Cleveland Clinic with Dr.

> Natowicz...

[Guest guest]

I wish I could give you a hug, it sounds like a very emotional week

in general...

I know how you are feeling though about the answers... everyone

keeps asking me how i am so positive about whats happening with

, even with all the uncertainty, and I just tell them that

having a name, however complicated and abstract as it is, is half

the battle... I spent the past 10 years of my life searching for a

name for MY health problems, I can imagine the stress that would go

along with doing that for your own child...

at least now we know what were up against, and can focus on dealing

with it... its so much harder to wonder.

I hope things keep looking up as they seem to be now...

Keely

> 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

[Guest guest]

last night when I got home and wrote the note I was feeling pretty

good. I think it has kind of hit me. It was a very long day and we

all have colds on top of the exhaustion of the appt. and testing. I

am glad that we have a name and have suspected for some time that

this is what it was. But hearing it outright I guess was harder than

I thought it would be. Thanks for all of the kind words.

Dawn