/was: Re: New-Intro-Diagnosis comments

[Guest guest]

Re: the hand

The hand issue is present here in kid#2 though he is slower globally

than you describe your daughter. Anyway, I have " dead hand " syndrome

at times. A dead hand is how my dad discovered the first of many

multiple strokes and heart attacks. As you know he sits today in the

hospital with congestive heart failure. I am very curious about the

vitamin E, carnitine and COQ10 assistance to the heart in some of

these kids. I am also curious about the genetics. Dr. Megson

says " these kids " have heart patient dads and celiac moms. If so, I

am one of these kids. My dad is the heart patient and my mom the

likely celiac. I was bright early on and struggled in school as time

went on but had wierd savant-like abilities in geometry in high

school yet in 6th grade when I did well in everything I struggled in

that. I tend to really get something or really not. No social issues

other than some (OK many here likely) get annoyed by my perseverance.

Was always middle of the road socially. Liked to have a good time but

not be the good time (laughed at the person swinging from chandelier

but did not wish to be her). Neither the most nor least popular. More

socially engaged outside home than in. Still, I had AP issues and

still struggle with organized thought. Physically I was pidgeontoed

until off milk. I am celiac and my hubby is likely a heart guy so the

cycle repeated to some extent with my babies. Hubby had a lisp as a

kid that he still hears today. I do not but it was noticeable when we

met 20 years ago. He had coordination issues and malabsorption along

with AP issues. In our case I do believe mercury is at issue and

vaccines are at issue but there is more to our stories. The hospital

used a record high amount of anesthesia to get baby #1 out because my

leg was stuck up in the air. It was bad. In fact the first

anesthesiologist bailed. I will always be thankful for the second

doc. If that is part of what we have here so be it. He made it

possible for me to have my baby. That is the kid who is superbright

but quirks show up as time goes on. She is also celiac. Given the

vitamin E stuff on this board I think more help may be available for

her. My son is more like my dad and hubby and has a congenital heart

condition he likely shares with them. There is a chromosome deletion

(#22?) associated with apraxia that is related to the heart thing my

boy has. I truly wonder if it relates to his hand. His hand has

improved. The first big improvement we saw was on diet but more was

seen on TLP. No changes when milk tested but oddly we have ridiculous

writing regression in celiac daughter who writes beautifully

otherwise, when milk is tested on her. We are currently testing to

find a good probiotic. As a celiac her options are limited which is

why we retried the raw milk. Not sure if this helps. Lastly, celiac

daughter started writing beautifully overnight. It was odd. No

explanation there but it seemed to occur after epsom salt use and one

calcium clay bath. I believe an imbalance of minerals remains at play

with her among other things.