Re: Bloodwork after using suppliments-- HELP PLEASE

[Guest guest]

I don't understand what all of these mean. I wouldn't know where to start. Do

I just look for any of these things, or are there certain brands specific for

children?

kiddietalk <kiddietalk@...> wrote: Hi !

Below are the tests that Dr. has suggested for our

children diagnosed with apraxia or autism. For me my main concern

was testing for carnitine deficiency due to the severity of it..sudden death

(and the much higher than usual number testing low in carnitine here)

-but

if you are getting your child tested may as well test for all she

suggests. I would take the abstract with you to show your child's

pediatrician. My son pediatrician didn't question sending Tanner for

all the blood work once I shared why we wanted to have him tested.

It was all covered by my insurance BC/BS The fish oils and vitamin E

won't affect the carnitine test -and most of us have our children on

these oils prior to the blood draw -just make sure you don't

supplement with carnitine prior to the blood draw.

Celiac panel

Vitamin E plasma levels (alpha and gamma)

Other fat soluble vitamins (A, D, K) (Many have fat malabsorption)

Metabolic studies: Lead level, CBC, complete metabolic panel, plasma

quant amino acids

carnitine (total, free, esters), acyl-carnitine panel (plasma),

urine organic acids, lactic acid, comprehensive fatty acid profile

(C8-26) -

a sendout to Mayo clinic - but other labs do it too.(rule out

metabolic disorder as cause of severe neurodevelopmental disorder -

apraxia/dyspraxia).

Celiac pane includes:

serum for

1) human tissue transglutaminase antibodies (TTG),

2) antiendomysial antibodies (EMA),

3) anti-gliadin IgA antibody,

4) anti-gliadin IgG antibody, and

5) total immunoglobulin A.

Consider below:

Supplement with omega 3/6/9 (2 caps) + 1 EPA given 2-3 times a day.

(Twice a

day may be sufficient with Vit E)

Vit E (alpha " d " tocophorol) NOT synthetic " dl " 400 IU

Gamma tocophorol 200-300 mg day

L-Carnitine if testing shows a deficit.

Consider a trial of gluten/casein free diet, but I would give the

above supplements at least a month or 2, since the diet may not be

necessary? Unless celiac positive, of course. Then gluten-free is

essential.

note from -and then the abstract is below:

These vitamin levels can be drawn by Quest or whatever lab your

insurance

covers. They are just probably a sendout. YOu need it ordered by you

MD.

Impact of carnitine supplements may not be clinically obvious - but

could be

helping strengthen heart muscle. Low levels are associated with a

floppy

dilated weak heart, and when it approachs 10-20% of normal, sudden

death can

occur. Carnitine is essential for normal cell/mitochondria function.

It

allows fatty acids to get transported into the mitochondria (or the

battery

of the cell). Major problems if this is not working properly. So you

may be

getting benefits that you don't obviously see. One does not want to

run

around with a severe carnitine deficiency and not treat it.

I had been wondering whether the EPA benefits we saw (which was the

most

dramatic of the fish oil)...was vitamin E (even though it was only 15

IU a

dose, or an additional 45 IU a day). But we saw regression within 48

hours

off EPA when I ran out, even though I gave an additional 1/4 tsp of

EFA

liquid to make up for it while I reorder more online. ph lost ALL

the

gains he had from EPA. So I wonder...was it the higher EPA dose, or

was it

the vit E? But even the increased vitamin E switching from liquid to

capsules over July 4 weekend created such a dramatic surge in ph

that we

were in search of the explanation...which only came after he started

regressing again a few days after we switched back to the liquid form

(cutting his vitamin E dose by 90 IU a day). So lower doses seemed to

make a

HUGE difference. However we didn't get a development of pain

sensation until

we went to much higher doses. Fascinating.

-

Print out the following abstract and bring with you

I have great news! The below abstract has been accepted at the Late-

Breaking Platform at the Pediatric Academy Society meetings in

Toronto this May 2007 for an oral presentation. This is one of the

largest annual pediatric meetings and many general pediatricians will

be there. This is an incredible opportunity to get information on

apraxia out to the general pediatric community. This session is also

well attended by the media which will likely pick up this story.

Hopefully the next step will be a funded clinical trial! Marilyn Agin

is going to join me there. Anyway this is something you can now print

out for your pediatrician. It will be published in the PAS/AAP

meeting proceedings - so now at least " something " will be published.

We have a long way to go, since this is still the summary of

anecdotal stories, but it is an excellent start. Many thanks to all

the families who emailed me clinical information after trying vit E +

omega 3. You have helped to move this forward. I stopped counting

once we hit 50 families. I know there are dozens more out there now.

And of course, many thanks to