for Laurie Kestrelclan: PDCD

[Guest guest]

Hi Laurie " Kestrelclan " , So sorry to hear about your daughter. I am an adult

with Thiamine-responsive Pyruvate Dehydrogenase

Complex Deficiency (generally called Thiamine-responsive PDH). According to my

doc, it appears that the terms PDCD and PDH are

interchangeable and that there is a Thiamine-responive PDH and a " regular PDH " .

According to info in an article from s

Hopkins that's posted at the umdf webpage, " my kind " of mito one with one of

the best prognosies. Does your daughter have the

Thiamine-responsive kind?After several months of posting on three newsgroups

searching for others, the only others I have only

been able to find two other with i tare a set of 3 year old fraternal twins.

I would be happy to trade info with you, but am rarely on this newsgroup. I

" hang out " an the adult mito newsgroup because I have

no children and this is more of a family group. Please contact me through my

e-mail address.

Best Wishes,

Anita in PA

> 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