Re: I am new and I need help

March 30, 2004

,

I don't know that this is a comfort to you or not, but so much of what you have described sounds very familiar. What Genetic doctor are you being sent to see? You are so right, there is a lot of different symptoms to Mito and everyone presents just a little different. Some things are similar but not all are the same. The heat issues, for my children are caused by having Dysautonomia. Their systems don't get the right message as to what to do to regulate their temperature. Dysmotililty issues are something we deal with on a slighter level than yours sounds like. We also are dealing with the NVD, Nuro Vascular Dystrophy which is very painful. Anyway, this is an awesome support group to be a part of. You can laugh cry, share your fears aswell as celebrate your joys without wondering what others are thinking of you. We have all pretty much been in all these places at least 10 times or more! So a big Welcome to you.

big hugs to you,

O

When the door of happiness closes, another opens, but often times we spend so much time looking at the closed door, we don't see the open door. Look for the open doors!

O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique

Visit our web page: WWW. caringbridge.org/ca/mitooggo

Help support my sister in her new business at : Come and see what's NEW! http://www.youravon.com/elleenmiller Your AVON representative (Sign in passcode: ElleensAVON if you are signing in for the first time :-)

March 30, 2004

,

I don't know that this is a comfort to you or not, but so much of what you have described sounds very familiar. What Genetic doctor are you being sent to see? You are so right, there is a lot of different symptoms to Mito and everyone presents just a little different. Some things are similar but not all are the same. The heat issues, for my children are caused by having Dysautonomia. Their systems don't get the right message as to what to do to regulate their temperature. Dysmotililty issues are something we deal with on a slighter level than yours sounds like. We also are dealing with the NVD, Nuro Vascular Dystrophy which is very painful. Anyway, this is an awesome support group to be a part of. You can laugh cry, share your fears aswell as celebrate your joys without wondering what others are thinking of you. We have all pretty much been in all these places at least 10 times or more! So a big Welcome to you.

big hugs to you,

O

When the door of happiness closes, another opens, but often times we spend so much time looking at the closed door, we don't see the open door. Look for the open doors!

O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique

Visit our web page: WWW. caringbridge.org/ca/mitooggo

Help support my sister in her new business at : Come and see what's NEW! http://www.youravon.com/elleenmiller Your AVON representative (Sign in passcode: ElleensAVON if you are signing in for the first time :-)

March 30, 2004

,

I don't know that this is a comfort to you or not, but so much of what you have described sounds very familiar. What Genetic doctor are you being sent to see? You are so right, there is a lot of different symptoms to Mito and everyone presents just a little different. Some things are similar but not all are the same. The heat issues, for my children are caused by having Dysautonomia. Their systems don't get the right message as to what to do to regulate their temperature. Dysmotililty issues are something we deal with on a slighter level than yours sounds like. We also are dealing with the NVD, Nuro Vascular Dystrophy which is very painful. Anyway, this is an awesome support group to be a part of. You can laugh cry, share your fears aswell as celebrate your joys without wondering what others are thinking of you. We have all pretty much been in all these places at least 10 times or more! So a big Welcome to you.

big hugs to you,

O

When the door of happiness closes, another opens, but often times we spend so much time looking at the closed door, we don't see the open door. Look for the open doors!

O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique

Visit our web page: WWW. caringbridge.org/ca/mitooggo

Help support my sister in her new business at : Come and see what's NEW! http://www.youravon.com/elleenmiller Your AVON representative (Sign in passcode: ElleensAVON if you are signing in for the first time :-)

March 31, 2004

Welcome to the group. You will really like it here. It is a place where you are very free to ask just about anything, vent, and share your happy times. Your daughter sounds a lot like many of the children in the group. Did you try the L Carnitine by prescription (Carnitor)? I do not know for sure if it will help her from being sick from it or not, but if you are actually deficient in it, it is pretty important to get it from somewhere. Carnitor has done a lot for my daughter, it has even helped with her digestion and helped her be able to eat things she never could as a baby. Have you been seen by someone with a specialty in mitochondrial diseases? I wish the best for you and your daughter.

March 31, 2004

Welcome to the group. You will really like it here. It is a place where you are very free to ask just about anything, vent, and share your happy times. Your daughter sounds a lot like many of the children in the group. Did you try the L Carnitine by prescription (Carnitor)? I do not know for sure if it will help her from being sick from it or not, but if you are actually deficient in it, it is pretty important to get it from somewhere. Carnitor has done a lot for my daughter, it has even helped with her digestion and helped her be able to eat things she never could as a baby. Have you been seen by someone with a specialty in mitochondrial diseases? I wish the best for you and your daughter.

March 31, 2004

Welcome to the group. You will really like it here. It is a place where you are very free to ask just about anything, vent, and share your happy times. Your daughter sounds a lot like many of the children in the group. Did you try the L Carnitine by prescription (Carnitor)? I do not know for sure if it will help her from being sick from it or not, but if you are actually deficient in it, it is pretty important to get it from somewhere. Carnitor has done a lot for my daughter, it has even helped with her digestion and helped her be able to eat things she never could as a baby. Have you been seen by someone with a specialty in mitochondrial diseases? I wish the best for you and your daughter.

March 31, 2004

...

Welcome and yes she does sound like my some and some of the other kids too. I did want to mention to you (correct me if I am wrong here) but as far as I know in all the literature and lectures from the UMDF conference I attended, that L-carnitine is not what is given when there is a carnitine deficiency. There is a RX type called Carnitor that most of the kids here take. was helped a great deal by it and not by the other things. You might ask whatever doc is helping you, to write you an RX for it. Most insurance companies will pay for it, it you handle it this way.

This is a great and helpful group...

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com

March 31, 2004

Dear ,

Welcome to the group. I hope you will

find a lot of support here. I know I have. Your daughter has symptoms that are

very similar to many of our children, including mine. I have 2 girls, Samya who

died at age 8 (Dec 10, 2002) and Leanna who is almost 7 and has the same

disease. I have found this group helpful, sometimes even more helpful than

doctors. I think this is because it is different when you have a child with mito. The parents are so

knowledgable and eager to help. I wish you the best of luck. If you would like,

you can visit my daughter’s website at www.samya.org

and you will be surprised how similar their symptoms are.

Love,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: concernforkierra

Sent: Tuesday, March 30, 2004 6:27

PM

To: Mito

Subject: I am new and I need help

My name is , and my daughter is 8. She has a lot of

health

problems and now we are being sent to a Genetic

doctor. Kierra is

almost 9, she weighs 46 lbs. She has been

off of her feeding tube

since the end of Dec. Her body would not

heal after the placement

(June) She has

gastroparesis,gerd,dysmotility disorder,chronic

constipation,carntine deficiency syndrome(but

Lconator makes her

sick) ,now her PT levels are elevated and oral

vit.k was not being

absorbed so tomorrow we start vit k shots.

She has been falling a

lot lately, has problems remembering, eats very

little, foods high

in fat make her sick. All of her sweat tests

have come back normal.

(she has had 3) I tried to read about

mitocondrial disease, but it

was so much. Oh another thing is, she has a

problem with heat. She

gets very red, almost like a sun burn and sweats

very bad. She

didn't even go out much last summer. Does

any of this sound simular

to any of your problems. She looks normal,

she is in the 3rd

grade. I just know that at the rate she is

going she will be on tnp

in no time. Thank you for any help you can

offer.

Please

contact mito-owner with any problems or questions.

March 31, 2004

My heart goes out to you. Samya was and still is a beautiful child.

I am really scared now. Kierra is 8 and I can't even imagine one

day without her. Thank you for sharing your story with me. God

Bless you and your family.

> Dear ,

>

> Welcome to the group. I hope you will find a lot of support here.

I know I

> have. Your daughter has symptoms that are very similar to many of

our

> children, including mine. I have 2 girls, Samya who died at age 8

(Dec 10,

> 2002) and Leanna who is almost 7 and has the same disease. I have

found this

> group helpful, sometimes even more helpful than doctors. I think

this is

> because it is different when you have a child with mito. The

parents are so

> knowledgable and eager to help. I wish you the best of luck. If

you would

> like, you can visit my daughter's website at www.samya.org

> http://www.samya.org/> and you will be surprised how similar

their

> symptoms are.

>

> Love,

>

> Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna

> with same disease.

>

> Samya's Memorial Site: www.Samya.org

>

> Email: Suhad1970@s...

>

> Alt Email: Suhad@S...

>

> AiM Chat: Suhad1970

>

> _____

>

> From: concernforkierra [mailto:kaempf10670@m...]

> Sent: Tuesday, March 30, 2004 6:27 PM

> To: Mito

> Subject: I am new and I need help

>

> My name is , and my daughter is 8. She has a lot of

health

> problems and now we are being sent to a Genetic doctor. Kierra is

> almost 9, she weighs 46 lbs. She has been off of her feeding tube

> since the end of Dec. Her body would not heal after the placement

> (June) She has gastroparesis,gerd,dysmotility disorder,chronic

> constipation,carntine deficiency syndrome(but Lconator makes her

> sick) ,now her PT levels are elevated and oral vit.k was not being

> absorbed so tomorrow we start vit k shots. She has been falling a

> lot lately, has problems remembering, eats very little, foods high

> in fat make her sick. All of her sweat tests have come back

normal.

> (she has had 3) I tried to read about mitocondrial disease, but

it

> was so much. Oh another thing is, she has a problem with heat.

She

> gets very red, almost like a sun burn and sweats very bad. She

> didn't even go out much last summer. Does any of this sound

simular

> to any of your problems. She looks normal, she is in the 3rd

> grade. I just know that at the rate she is going she will be on

tnp

> in no time. Thank you for any help you can offer.

>

> Please contact mito-owner with any problems or

questions.

>

> _____

>

March 31, 2004