Re: Negative behaviors in response to carnitine supplements?

[Guest guest]

Sounds like a disconnected thought but with all those allergies have you had a

sleep study done? My son has a lot of allerdies and I finally had one done to

find out he had apnea. I have met several parents on this board who had

tonsils and adenoids out which helped with sleep and apraxia. Just mentioning

it because of the allergies. I just found out my sons allergies are also

affecting his hearing off and on. There is water in between his ears. Its

not and infection but is causing his hearing to be less than adequate. His

previous hearing tests were all normal but you may want to keep an sta on this

if your child has runny nose from the allergies

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Vitamin E 2,000 IU/daily sounds too high for me. It's my understanding 800 IU is

kind of a roof. You can read about Vitamin E here

/links/Vitamin_E_0011833\

85261/

And, related to that, you can also read reports on Speak, a supplement with high

vitamin E, made by members of this group who tried it:

/links/Pharma_Omega_Spea\

k_reports_from_group_001224703760/

Hope it helps!

[Guest guest]

I would pay attention to when the tantrums are taking place. L-Carnitine is one

of those things that I believe is best given several times over the course of

the day. It is helping the cell inside of the mitochondria with energy

production. If the carnitine wheres off could this be when the problem occurs.

A lot of these children have problems at the cellular level. Could be caused by

food allergies. Have you considered an elimination diet. Often food allergies

are misdiagnosed, and it is much easier to tell if you have eliminated and

reintroduced.Good Luck.

Jo

Mom to Annie 13

[Guest guest]

When my son was 7 we added carnitine and the CoQ10 to NN fish oil,E, calcium and

zinc he was taking. While he seemed to have a little more energy and improved

responsivenss in school, he became very agressive, faster to get angry and

easily frustrated too. We took him off both and most of this behavior went

away.

[Guest guest]

Hi ,

Don't know if I can help you, but my son is on 500mg acetyl-L carnitine 2x's day

(total 1000mg). His metabolic geneticist put him on it (he is 3 1/2 years old w/

severe verbal/oral apraxia, dyspraxia, hypotonia, SPD). We started with the Rx

Carnitor, but wasn't seeing much of an improvement (even though his lab values

went up). We changed to the acetyl L carnitine...and boy, what a difference! We

give it with his omegas/vit E also (I mix it all in his chocolate rice

milk...gross, I know, but it is the only way he will take it!)

The only difference, is we give way less Vit E (500IU alpha+gamma). I worry

about giving too much E since it is fat soluable and leaves you at high risk for

hypervitaminosis. We give him the Carlson's powder form of acetyl l carnitine.

1/2 tsp.= 1200mg

-Jenna (mom to Larsyn & Chance)

Orange County, CA

>

> DD, 6, has diagnosis of dyspraxia/apraxia. She has had several autism evals

and all docs are unanimous that she is not on the spectrum.

>

[Guest guest]

Hi, Can you please elaborate on what differences you saw when you switched to

the acetyl L carnitine? thanks.

>

> Hi ,

> Don't know if I can help you, but my son is on 500mg acetyl-L carnitine 2x's

day (total 1000mg). His metabolic geneticist put him on it (he is 3 1/2 years

old w/ severe verbal/oral apraxia, dyspraxia, hypotonia, SPD). We started with

the Rx Carnitor, but wasn't seeing much of an improvement (even though his lab

values went up). We changed to the acetyl L carnitine...and boy, what a

difference! We give it with his omegas/vit E also (I mix it all in his chocolate

rice milk...gross, I know, but it is the only way he will take it!)

> The only difference, is we give way less Vit E (500IU alpha+gamma). I worry

about giving too much E since it is fat soluable and leaves you at high risk for

hypervitaminosis. We give him the Carlson's powder form of acetyl l carnitine.

1/2 tsp.= 1200mg

> -Jenna (mom to Larsyn & Chance)

> Orange County, CA

>

>

>

[Guest guest]

Vitamin E 2,000 IU/daily sounds too high for me. It's my understanding 800

IU is kind of a roof. You can read about Vitamin E here

/links/Vitamin_E_0011833\

85261/

A lot of kids do welll on vitamin E, as some parents have reported you.

And, related to that, you can also read reports on Speak, a supplement with

very high vitamin E, made by members of this group who tried it:

/links/Pharma_Omega_Spea\

k_reports_from_group_001224703760/

Hope it helps!

[ ] Negative behaviors in response to carnitine

supplements?

DD, 6, has diagnosis of dyspraxia/apraxia. She has had several autism evals

and all docs are unanimous that she is not on the spectrum.

In response to the paper in Alternative Therapies in July we asked our ped

to run some metabolic bloodwork. DD's bloodwork came back low for carnitine

so her ped recommended supplements. She has always been prone to temper

tantrums/rages, but had improved dramatically for a few months. As a

complicating factor, her seasonal allergies are bad at the moment (we do

shots and she takes 2 tsp of Zyrtec, has for years) but she still has a hard

time.

She is currently taking:

Acetyl-L-Carnitine 500 mg (once daily) ONLY NEW THING, it has been a few

weeks now

Kirkman Children's Chewable Multi-Vitamin Mineral Wafers (2/day)

Vitamin E Complete 8 (2,000 IU/daily)

NN Complete Omegas (1 tsp/twice daily)

If the carnitine makes the omegas and E work better could those formerly

fine doses be too " high " ? On the plus side, she seems more talkative and

remembers more detail on the carnitine. She is a tremendous responder to the

E and omegas, a huge amount of neuropathy has disappeared over the past year

and she is doing fine in a regular K classroom.

We have an appointment with a metabolic doc in a few weeks but just wondered

if anyone else had this experience.

I found a different brand of Acetyl-L-Carnitine that comes in a 250 dose, is

it like the omegas where it's better to start lower? Also, do people give

the carnitine separately? We tend to give it with the E and omegas. Our

bottle says best between meals but we often end up giving the supplements at

breakfast and dinner because that is when we are around.

I'd appreciate hearing other's experiences.

Thanks,