Myers family update (long)

[Guest guest]

Dawn

As hard as it to have your worse thoughts confirmed, I can read the relief

you your post. I am glad you are finely getting some answers and that you

can start treatment.

Please keep us posted on how things go once home. Please rest up when you

get there if at all possible.

hugs,

laurie

>

> Reply-To:

> Date: Thu, 23 Sep 2004 01:57:33 -0000

> To:

> Subject: Myers family update (long)

>

> 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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>

>

>

[Guest guest]

---It sounds like you have had a hard year.I am sure today came with

mixed emotions. But like Larie said she could hear the relief in

your voice. It is good to have answers so now you can work on the

problems. I hope the mito cocktail...helps all of you to feel

better. You are going to be tired when you get home. I will pray

that the stress in your life is at a minimum and you all can work on

feeling better.

Best Wishes

dawn a

In , " thefourofus03 "

wrote:

> 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]

Hi Dawn,

It sure sounds as if your family has had quite a day with another to follow.

The answers you got are probably giving you mixed feelings as it's good to get a

reason but the reason probably doesn't feel too good although I'm sure you

suspected to hear this. I know the grief of having multiple family members

diagnosed and at first, it's really hard to take. Unfortunately, this is a

familiar road for you so you have a good idea what to expect. Today should be

somewhat easier with the labs and then you can go home.

It's good to get the answers because now you can get beyond them, start the

treatment plan and live life.

Hugs,

Alice