Re: testings by peditrician Q for

[Guest guest]

Well, I finally took Ben to a non-emergency pediatrician's visit with 's

abstracts and

research info in hand. The pediatrician was willing to measure his L-carnitine,

total and free,

and vitamins A,D,E, and K--but Benny is one strong kid. Two nurses tried to

hold him to get

the blood drawn and they managed to draw two partial tubes and bust two veins,

in three

tries. And he had to be taken to Toys R Us afterwards to buy an indoor tent to

hide in. And

my son and daughter-in-law were annoyed with me for allowing him to be

traumatized.

Here's the worse part: I am almost positive that the lab would have done at

least SOME of

those tests with the amount of blood they DID get, but no, they wouldn't send it

in because

they said the lab would send it back. So she gave me a prescription to have the

bloodwork

drawn AGAIN at a lab somewhere.

Well he has an appt. on Oct. 6 with the child psych dept. at a Regional Medical

Center, and

the lab there was able to draw blood before, so I am going to see if it can be

done again

there. NO WAY am I going to take him to a local Labcorps or Quest lab and see if

they can do

it.

Frustrated,

Kathy E.

[Guest guest]

> >

> > Even with normal vit E levels, I would give vit E a try. Its safe

> at

> > the doses we've talked about here, and it may be that our kids

need

> > higher than the normal dose for the vitamin E to actually get

> > transported into the nervous system - where it is critically

> > needed. Also good to know that levels were or were not low when

> you

> > started. This is very interesting. I wonder how many kids out

there

> > with apraxia are carnitine deficient. Turns out that ALL my

> children

> > are carnitine deficient, although only one is apraxic...but my

> > middle child has issues around his gluten-sensitivity.

My " healthy "

> > 8 year old daughter has a positivie celiac serology and low

> > carnitine too. There is more to this story...and I think we've

just

> > scratched the surface.

> >

> > Here's hoping omega 3/carnitine and vit E help your little girl!

> >

> > -

> >

> > > This message is for to see and other Mothers to

> > encourage

> > > them to be stubborn to ask questions and demand answers... You

> > were right

> > > about your fears of carnitine levels...My daughter levels were

> > below normal

> > > and we have seen two neurologists, two genetists, an

> > endocrinologist besides

> > > 2 pediatricians none ever asked to check these levels...I had

> > decided not to

> > > start on the E till I had her ADEK , Zinc and Carnitine

> > levels

> > > checked after reading this email message by . We

> > are still

> > > waiting on the K and D levels but A & E are normal. We are

> shocked

> > to see

> > > the low levels and wonder now who will follow up with this turn

> of

> > events

> > > And I wonder if now I should wait to start the E... I so wanted

> to

> > start it

> > > to see if it would help her sensory issues ..Her total

Carnitine

> > level is 21

> > > and her Free Carnitine is 16. No wonder has the

hypotonia.

> > > Roxanne

> > >

> > > _____

>

[Guest guest]

>

> Well, I finally took Ben to a non-emergency pediatrician's visit

with 's abstracts and

> research info in hand. The pediatrician was willing to measure his

L-carnitine, total and free,

> and vitamins A,D,E, and K--but Benny is one strong kid. Two nurses

tried to hold him to get

> the blood drawn and they managed to draw two partial tubes and bust

two veins, in three

> tries. And he had to be taken to Toys R Us afterwards to buy an

indoor tent to hide in. And

> my son and daughter-in-law were annoyed with me for allowing him to

be traumatized.

>

> Here's the worse part: I am almost positive that the lab would have

done at least SOME of

> those tests with the amount of blood they DID get, but no, they

wouldn't send it in because

> they said the lab would send it back. So she gave me a

prescription to have the bloodwork

> drawn AGAIN at a lab somewhere.

>

> Well he has an appt. on Oct. 6 with the child psych dept. at a

Regional Medical Center, and

> the lab there was able to draw blood before, so I am going to see

if it can be done again

> there. NO WAY am I going to take him to a local Labcorps or Quest

lab and see if they can do

> it.

>

> Frustrated,

> Kathy E.

>

Kathy,

My oldest has to have monthly blood draws which were very difficult

when he was younger. I found that it was a waste of time to try

anywhere other than the hospital outpatient lab. They had enough

people to immobilize him so he didn't get more agitated by struggling

and they had staff with the experience to find the vein on the first

try.

Good luck,

Karyn

[Guest guest]

Well we had our other children(3 others, but all girls) tested and

they were fine,one was lowish, not as low as my son, and she is the

CARBON copy of him in every way, anyway while we were waiting for

their results, I came across a research study about post polio

syndrome, and it stated that the decendants of polio victims have

lower carnitine levels than controls, down to the grandchildren, so

since all of your kids tested lowish, the study popped into my

mind. Here it is

http://www.upnaway.com/~poliowa/Serum%20Carnitine%20Levels%202002.html

http://www.upnaway.com/~poliowa/index.html

> > >

> > > Even with normal vit E levels, I would give vit E a try. Its

safe

> > at

> > > the doses we've talked about here, and it may be that our kids

> need

> > > higher than the normal dose for the vitamin E to actually get

> > > transported into the nervous system - where it is critically

> > > needed. Also good to know that levels were or were not low when

> > you

> > > started. This is very interesting. I wonder how many kids out

> there

> > > with apraxia are carnitine deficient. Turns out that ALL my

> > children

> > > are carnitine deficient, although only one is apraxic...but my

> > > middle child has issues around his gluten-sensitivity.

> My " healthy "

> > > 8 year old daughter has a positivie celiac serology and low

> > > carnitine too. There is more to this story...and I think we've

> just

> > > scratched the surface.

> > >

> > > Here's hoping omega 3/carnitine and vit E help your little girl!

> > >

> > > -

> > >

> > > > This message is for to see and other Mothers to

> > > encourage

> > > > them to be stubborn to ask questions and demand answers... You

> > > were right

> > > > about your fears of carnitine levels...My daughter levels were

> > > below normal

> > > > and we have seen two neurologists, two genetists, an

> > > endocrinologist besides

> > > > 2 pediatricians none ever asked to check these levels...I had

> > > decided not to

> > > > start on the E till I had her ADEK , Zinc and

Carnitine

> > > levels

> > > > checked after reading this email message by .

We

> > > are still

> > > > waiting on the K and D levels but A & E are normal. We are

> > shocked

> > > to see

> > > > the low levels and wonder now who will follow up with this

turn

> > of

> > > events

> > > > And I wonder if now I should wait to start the E... I so

wanted

> > to

> > > start it

> > > > to see if it would help her sensory issues ..Her total

> Carnitine

> > > level is 21

> > > > and her Free Carnitine is 16. No wonder has the

> hypotonia.

> > > > Roxanne

> > > >

> > > > _____

> >

>

[Guest guest]

My maternal grandmother had polio as a child. I'm not sure about my paternal

side of the family. Why do you ask???

" claudia.morris " <claudia.morris@...> wrote:

> >

> > Even with normal vit E levels, I would give vit E a try. Its safe

> at

> > the doses we've talked about here, and it may be that our kids

need

> > higher than the normal dose for the vitamin E to actually get

> > transported into the nervous system - where it is critically

> > needed. Also good to know that levels were or were not low when

> you

> > started. This is very interesting. I wonder how many kids out

there

> > with apraxia are carnitine deficient. Turns out that ALL my

> children

> > are carnitine deficient, although only one is apraxic...but my

> > middle child has issues around his gluten-sensitivity.

My " healthy "

> > 8 year old daughter has a positivie celiac serology and low

> > carnitine too. There is more to this story...and I think we've

just

> > scratched the surface.

> >

> > Here's hoping omega 3/carnitine and vit E help your little girl!

> >

> > -

> >

> > > This message is for to see and other Mothers to

> > encourage

> > > them to be stubborn to ask questions and demand answers... You

> > were right

> > > about your fears of carnitine levels...My daughter levels were

> > below normal

> > > and we have seen two neurologists, two genetists, an

> > endocrinologist besides

> > > 2 pediatricians none ever asked to check these levels...I had

> > decided not to

> > > start on the E till I had her ADEK , Zinc and Carnitine

> > levels

> > > checked after reading this email message by . We

> > are still

> > > waiting on the K and D levels but A & E are normal. We are

> shocked

> > to see

> > > the low levels and wonder now who will follow up with this turn

> of

> > events

> > > And I wonder if now I should wait to start the E... I so wanted

> to

> > start it

> > > to see if it would help her sensory issues ..Her total

Carnitine

> > level is 21

> > > and her Free Carnitine is 16. No wonder has the

hypotonia.

> > > Roxanne

> > >

> > > _____

>

---------------------------------

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[Guest guest]

I had a miserable experience getting blood drawn at a Quest lab when

I was pregnant and decided that was it for going to labs like that

to get blood drawn.

>

> Well, I finally took Ben to a non-emergency pediatrician's visit

with 's abstracts and

> research info in hand. The pediatrician was willing to measure

his L-carnitine, total and free,

> and vitamins A,D,E, and K--but Benny is one strong kid. Two

nurses tried to hold him to get

> the blood drawn and they managed to draw two partial tubes and

bust two veins, in three

> tries. And he had to be taken to Toys R Us afterwards to buy an

indoor tent to hide in. And

> my son and daughter-in-law were annoyed with me for allowing him

to be traumatized.

>

> Here's the worse part: I am almost positive that the lab would

have done at least SOME of

> those tests with the amount of blood they DID get, but no, they

wouldn't send it in because

> they said the lab would send it back. So she gave me a

prescription to have the bloodwork

> drawn AGAIN at a lab somewhere.

>

> Well he has an appt. on Oct. 6 with the child psych dept. at a

Regional Medical Center, and

> the lab there was able to draw blood before, so I am going to see

if it can be done again

> there. NO WAY am I going to take him to a local Labcorps or Quest

lab and see if they can do

> it.

>

> Frustrated,

> Kathy E.

>

[Guest guest]

I had a miserable experience getting blood drawn at a Quest lab when

I was pregnant and decided that was it for going to labs like that

to get blood drawn.

>

> Well, I finally took Ben to a non-emergency pediatrician's visit

with 's abstracts and

> research info in hand. The pediatrician was willing to measure

his L-carnitine, total and free,

> and vitamins A,D,E, and K--but Benny is one strong kid. Two

nurses tried to hold him to get

> the blood drawn and they managed to draw two partial tubes and

bust two veins, in three

> tries. And he had to be taken to Toys R Us afterwards to buy an

indoor tent to hide in. And

> my son and daughter-in-law were annoyed with me for allowing him

to be traumatized.

>

> Here's the worse part: I am almost positive that the lab would

have done at least SOME of

> those tests with the amount of blood they DID get, but no, they

wouldn't send it in because

> they said the lab would send it back. So she gave me a

prescription to have the bloodwork

> drawn AGAIN at a lab somewhere.

>

> Well he has an appt. on Oct. 6 with the child psych dept. at a

Regional Medical Center, and

> the lab there was able to draw blood before, so I am going to see

if it can be done again

> there. NO WAY am I going to take him to a local Labcorps or Quest

lab and see if they can do

> it.

>

> Frustrated,

> Kathy E.

>