()Re: Introduction

[Guest guest]

,

Thanks:) Our experience in Cleveland was very positive with all we came in contact with. I sampled numerous treats from the Deli.:)

As soon as the confusion settles I'll give you a call.

Hugs,

Marie

Introduction

Hi to all,

My name is Marie and I am mom to eight children ages 23, 20, 17, 15, 11, 7, 5 and 2 years old. We live in Pennsylvania outside of Philadelphia.

I subscribed to this list about 2 months ago and have been reading and trying to absorb the vast amount of information I've received here. You've all helped tremendously without knowing it. I never formally introduced myself prior to this as in my heart I was hoping that I really didn't belong here and there was some other explanation for the heartbreaking medical things we have been dealing with in our kids.

We saw Dr. Bruce Cohen with four of our children this past week (19th and 20th) and arrived home on Friday morning. Based on all the testing results we provided (muscle biopsy, amino acids/organic acids, etc...) and a long list of clinical symptoms.........Dr. Cohen diagnosed us with a Mitochondrial disorder. We're probably dealing with MELAS.

I'm rather fried at the moment. It has been a long and exhausting road to this point of feeling like I see things that really aren't there and many times being made to feel like I am the one with the problem and not my kids. I think you all understand what I mean by this.

The very first person who was able to put this all together for us was Ken Hirsch from the list. We met him for the first time several months ago and after reviewing all the info we brought him told us he felt we were dealing with Mito. He is now our Doc for six of the kids. We feel very blessed to have him. He has been a wonderful source of information and support for us and is a truly wonderful human being. Poor guy had no clue what he was getting himself into taking us on. :) (Thanks Dr. Ken.......I promised you that I would seek support after Cleveland and I WILL be at the next DEL VAL meeting!

There are a couple moms on this list that I know from another list. Hi Kass, e, Heidi!!!

The list of kids and symptoms are long. If anybody really wants to know I'll be happy to share. I didn't want to write a book on my first post.

My very first question to you is regarding CoQ. With a family this size we are talking a lot of CoQ. Are any of you able to get this covered by insurance? What are the best sources to obtain it? I need liquid and pills. At this point four of the kids are going to start carnitor as well. Things may change once the tests Dr. Cohen did are back.

Any advice would be greatly appreciated.

Marie

Please contact mito-owner with any problems or questions.