Re: To All: My Love, Support and prayers!!!

[Guest guest]

Hi Ann Marie,

Glad you're back among the healthy. Also, i noticed that Joe has tethered cord syndrome. My oldest has a deep pylinidal (sp?) dimple and the docs thought for a long time that it was tethered cord. Turns out it wasn't but have the docs told you Joe's is related to his mito complex? We are dealing with PDCD on our end. Thanx and glad you're back.

ruth

mom to Mitch (nearly 10..YIKES!) and Lexi (nearly 7...Yikes again!), both mito affected and my treasures

[Guest guest]

Hi Ruth,

Both his Cerebral Palsy (caused by malpractice) and his Tethered Chord

Syndrome without spina bifida (rare birth defect) are not related to

his mito

diagnosis. They just complicate the heck out of getting answers when

anything

goes astray. The docs... the varied specialists all try to refer him

to the others

b/c so many of his issues could be from the cp, the mito or a

retethering (praying

this never happens).... so we get conflicting ideas from so many

specialists that

we have to play doc ourselves and try to narrow down certain issues and

then

force the docs into recognizing and treating his issues. Basically we

start going down

the list of what we can "rule out" to try to find what is going on with

him.

His tethered chord had the "fatty lipomas" and he was tethered at L3-L4

not at L-1 or

below as is typical, he also has no coccyx(sp?)/ tailbone.

We joke with the ped. neurosurgeon, that he will have to write a new

medical text book

just for Joe as Joe has never followed even the "typical" symptoms

within the "rare disorders".

LOL! We try to keep a sense of humor here!!!

Hope this helps some,

Praying for all of us,

AnnMarie L. - Complex IV (pre-diabetic, hypothyroid, adrenal/endocrine

issues)

Married to my best friend Rick,

Very Busy Mom to (15), (12), Cassandra (6) and

Joe (5) - complex IV, lactic acidosis, CP,

tethered chord syndrome, dysautonomia, and

a smile that never quits :-)

hilandgang@... wrote:

Hi Ann Marie,

Glad

you're back among the healthy. Also, i noticed that Joe has tethered cord syndrome. My

oldest has a deep pylinidal (sp?) dimple and the docs thought for a

long time that it was tethered cord. Turns out it wasn't but have the

docs told you Joe's is related to his mito complex? We are dealing

with PDCD on our end. Thanx and glad you're back.

ruth

mom to Mitch (nearly

10..YIKES!) and Lexi (nearly 7...Yikes again!), both mito affected and

my treasures

Please contact mito-owner with any problems or

questions.