new to mito group/I have a daughter with PDCD

[Guest guest]

Hi,

I have a daughter with pdcd. She is a beautiful soon to be 5 year

old who absolutely loves her older sister,younger brother and baby

sister.I was just wondering if there is anyone else out there who is

familiar with this mitochondrial disorder.I would love to talk to

you because sometimes I feel like I am the only one who has a child

with this particular disorder.Thanks to anyone who can help. Laurie

[Guest guest]

Welcome to the group. My son has complex I, but I wanted to welcome

you and to let you know to post your questions and someone will

answer. We may not have the same type of mito but we are all

dealing with the same problems.

Geri-Anne and Wyatt, Complex I

> Hi,

> I have a daughter with pdcd. She is a beautiful soon to be 5 year

> old who absolutely loves her older sister,younger brother and baby

> sister.I was just wondering if there is anyone else out there who

is

> familiar with this mitochondrial disorder.I would love to talk to

> you because sometimes I feel like I am the only one who has a

child

> with this particular disorder.Thanks to anyone who can help. Laurie

[Guest guest]

Based on his muscle biopsy, we think our son Sheldon has PDH

deficiency. He's almost 3. Feel free to contact me.

Hi,

I have a daughter with pdcd. She is a beautiful soon to be 5 year

old who absolutely loves her older sister,younger brother and baby

sister.I was just wondering if there is anyone else out there who

is

familiar with this mitochondrial disorder.I would love to talk to

you because sometimes I feel like I am the only one who has a

child

with this particular disorder.Thanks to anyone who can help.

Laurie

Please contact mito-owner with any problems or

questions.

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[Guest guest]

HI,

My son, was diagnosed just 5 months ago with PDH. He is 8

years old, has seizures, microcephaly, and profoundly congnitively

challenged. I am also learning all about PDH . I did find out he is

not in the group of Thiamine responsiveness but I have started him on

the mito cocktail. I also have been limited his intake of

carbohydrates and with the atkins diet out there it has been much

easier to look for low carbs food. With limiting his intake of carbs

I have found he is more interested in toys, has learned to turn the

doorknob and open doors, and is making a new sound. Currently he

does not talk at all. I will be going to the feeding team clinic at

childrens hospital and will see if I can switch him to a low carb

nutritional drink since Boost Plus is very high in carbs. I really

don't want to start the Keogentic diet since we would probably have

to put him on a tube feeding to accomplish this. We also have had

refulx problems under control, seizures under control all with

medications.

If you would like to e-mail me off-line to chat more, please do.

( PDH, seizures, refux)

> Hi,

> I have a daughter with pdcd. She is a beautiful soon to be 5 year

> old who absolutely loves her older sister,younger brother and baby

> sister.I was just wondering if there is anyone else out there who

is

> familiar with this mitochondrial disorder.I would love to talk to

> you because sometimes I feel like I am the only one who has a child

> with this particular disorder.Thanks to anyone who can help. Laurie