Re: Sucess on Vit E Carnitine/Carnaware - Should I try this?

[Guest guest]

I think it's worth a try, since they help some kids. Are you concerned

that they aren't safe? Carnaware appears to be quite safe from the

studies I've seen, and carnitine is safe if you know your child has

low levels. These supps might help, and neither is outrageously

expensive. I'd give 4 capsules a day of carnaware (2 caps in the

morning, 2 in the evening). If you haven't tested his carnitine

levels, I would do that before starting carnitine. I think someone

posted a recommendation on dosages for carnitine recently. I give my

son 500 mg/day.

The only thing that has improved my son's muscle tone is creatine. I

don't know if any of you have tried it. I haven't given it to my

daughter who had the apraxia dx.

>

> My son will be 5 years old in November, with severe verbal apraxia. He

> has very low muscle tone in his face, feeding problems, speech delay,

> excessive drooling. His upper body has some low muscle tone too, but

> the OT and PT thinks that we should be ok with 6 months of therapy,

> however his speech therapist thinks that we have years to come... He

> is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400 Pure E +

> 200 High Gamma + 200 Mixed Tocopherols) per day. I am thinking in

> ading Carnitine and Carnaware. Any suggestions as far as dosage? He

> is responding very well to the Vitamin E, in fact the SLP mentioned

> this week that he is making a lot of progress (that she thought would

> take longer) Kudos to and all the moms that never cease to look

> for help.

> Thanks Deborah

>

[Guest guest]

Get his carnitine level and aceylcarnitine level checked before

supplementing. If its normal, you can still try supplements, since

they are safe, but you would want to know if he has a true carnitine

deficiency...and look for the cause. -claudia

> My son will be 5 years old in November, with severe verbal

apraxia. He

> has very low muscle tone in his face, feeding problems, speech

delay,

> excessive drooling. His upper body has some low muscle tone too,

but

> the OT and PT thinks that we should be ok with 6 months of

therapy,

> however his speech therapist thinks that we have years to come...

He

> is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400 Pure

E +

> 200 High Gamma + 200 Mixed Tocopherols) per day. I am thinking in

> ading Carnitine and Carnaware. Any suggestions as far as dosage?

He

> is responding very well to the Vitamin E, in fact the SLP

mentioned

> this week that he is making a lot of progress (that she thought

would

> take longer) Kudos to and all the moms that never cease to

look

> for help.

> Thanks Deborah

>

[Guest guest]

I think it's worth a try, since they help some kids. Are you concerned

that they aren't safe? Carnaware appears to be quite safe from the

studies I've seen, and carnitine is safe if you know your child has

low levels. These supps might help, and neither is outrageously

expensive. I'd give 4 capsules a day of carnaware (2 caps in the

morning, 2 in the evening). If you haven't tested his carnitine

levels, I would do that before starting carnitine. I think someone

posted a recommendation on dosages for carnitine recently. I give my

son 500 mg/day.

The only thing that has improved my son's muscle tone is creatine. I

don't know if any of you have tried it. I haven't given it to my

daughter who had the apraxia dx.

>

> My son will be 5 years old in November, with severe verbal apraxia. He

> has very low muscle tone in his face, feeding problems, speech delay,

> excessive drooling. His upper body has some low muscle tone too, but

> the OT and PT thinks that we should be ok with 6 months of therapy,

> however his speech therapist thinks that we have years to come... He

> is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400 Pure E +

> 200 High Gamma + 200 Mixed Tocopherols) per day. I am thinking in

> ading Carnitine and Carnaware. Any suggestions as far as dosage? He

> is responding very well to the Vitamin E, in fact the SLP mentioned

> this week that he is making a lot of progress (that she thought would

> take longer) Kudos to and all the moms that never cease to look

> for help.

> Thanks Deborah

>

[Guest guest]

Get his carnitine level and aceylcarnitine level checked before

supplementing. If its normal, you can still try supplements, since

they are safe, but you would want to know if he has a true carnitine

deficiency...and look for the cause. -claudia

> My son will be 5 years old in November, with severe verbal

apraxia. He

> has very low muscle tone in his face, feeding problems, speech

delay,

> excessive drooling. His upper body has some low muscle tone too,

but

> the OT and PT thinks that we should be ok with 6 months of

therapy,

> however his speech therapist thinks that we have years to come...

He

> is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400 Pure

E +

> 200 High Gamma + 200 Mixed Tocopherols) per day. I am thinking in

> ading Carnitine and Carnaware. Any suggestions as far as dosage?

He

> is responding very well to the Vitamin E, in fact the SLP

mentioned

> this week that he is making a lot of progress (that she thought

would

> take longer) Kudos to and all the moms that never cease to

look

> for help.

> Thanks Deborah

>

[Guest guest]

Thanks , I will call my Pediatrician and get a prescription

for the tests. It seems like every day a see a little bit of

progress, since started on Vit. E. We had OT and PT evals this week

and both therapists said that he is not so bad, however if we had

done the tests before the vitamin E I am sure that the scores would

be lower. started to repeat words this week, for instance,

he was watching Dora today, and she was saying senta (seat in

English) and he was trying very hard to say senta. On thrusday, the

SLP was working with the Kauffman Praxis kit, and working on the

word no, he kept playing with her saying the opposite: yes (very

clear). I could not hold the tears, specially when she said that he

is making progress faster than she thought. This sounded like

angels singing in my ears, for the last five years, I had very

little hope, (but never gave up, of course), after hearingfrom the

other SLPs that they did not know if he was ever going to talk,

etc... Thank you so much for your time and good spirit in sharing

all of this with us. God Bless you!

Deborah

, " claudia.morris "

<claudia.morris@...> wrote:

>

>

>

> Get his carnitine level and aceylcarnitine level checked before

> supplementing. If its normal, you can still try supplements, since

> they are safe, but you would want to know if he has a true

carnitine

> deficiency...and look for the cause. -claudia

>

> > My son will be 5 years old in November, with severe verbal

> apraxia. He

> > has very low muscle tone in his face, feeding problems, speech

> delay,

> > excessive drooling. His upper body has some low muscle tone

too,

> but

> > the OT and PT thinks that we should be ok with 6 months of

> therapy,

> > however his speech therapist thinks that we have years to

come...

> He

> > is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400

Pure

> E +

> > 200 High Gamma + 200 Mixed Tocopherols) per day. I am thinking

in

> > ading Carnitine and Carnaware. Any suggestions as far as

dosage?

> He

> > is responding very well to the Vitamin E, in fact the SLP

> mentioned

> > this week that he is making a lot of progress (that she thought

> would

> > take longer) Kudos to and all the moms that never cease

to

> look

> > for help.

> > Thanks Deborah

> >

>

[Guest guest]

Thanks . I will be calling my pediatrician today to request the

tests. Yes, my main concern is safety with him. Deborah

> >

> > My son will be 5 years old in November, with severe verbal

apraxia. He

> > has very low muscle tone in his face, feeding problems, speech

delay,

> > excessive drooling. His upper body has some low muscle tone

too, but

> > the OT and PT thinks that we should be ok with 6 months of

therapy,

> > however his speech therapist thinks that we have years to

come... He

> > is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400

Pure E +

> > 200 High Gamma + 200 Mixed Tocopherols) per day. I am thinking

in

> > ading Carnitine and Carnaware. Any suggestions as far as

dosage? He

> > is responding very well to the Vitamin E, in fact the SLP

mentioned

> > this week that he is making a lot of progress (that she thought

would

> > take longer) Kudos to and all the moms that never cease

to look

> > for help.

> > Thanks Deborah

> >

>

[Guest guest]

> >

> > Get his carnitine level and aceylcarnitine level checked before

> > supplementing. If its normal, you can still try supplements,

since

> > they are safe, but you would want to know if he has a true

> carnitine

> > deficiency...and look for the cause. -claudia

> >

> > > My son will be 5 years old in November, with severe verbal

> > apraxia. He

> > > has very low muscle tone in his face, feeding problems, speech

> > delay,

> > > excessive drooling. His upper body has some low muscle tone

> too,

> > but

> > > the OT and PT thinks that we should be ok with 6 months of

> > therapy,

> > > however his speech therapist thinks that we have years to

> come...

> > He

> > > is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400

> Pure

> > E +

> > > 200 High Gamma + 200 Mixed Tocopherols) per day. I am

thinking

> in

> > > ading Carnitine and Carnaware. Any suggestions as far as

> dosage?

> > He

> > > is responding very well to the Vitamin E, in fact the SLP

> > mentioned

> > > this week that he is making a lot of progress (that she

thought

> > would

> > > take longer) Kudos to and all the moms that never

cease

> to

> > look

> > > for help.

> > > Thanks Deborah

> > >

> >

>

[Guest guest]

Thanks , I will call my Pediatrician and get a prescription

for the tests. It seems like every day a see a little bit of

progress, since started on Vit. E. We had OT and PT evals this week

and both therapists said that he is not so bad, however if we had

done the tests before the vitamin E I am sure that the scores would

be lower. started to repeat words this week, for instance,

he was watching Dora today, and she was saying senta (seat in

English) and he was trying very hard to say senta. On thrusday, the

SLP was working with the Kauffman Praxis kit, and working on the

word no, he kept playing with her saying the opposite: yes (very

clear). I could not hold the tears, specially when she said that he

is making progress faster than she thought. This sounded like

angels singing in my ears, for the last five years, I had very

little hope, (but never gave up, of course), after hearingfrom the

other SLPs that they did not know if he was ever going to talk,

etc... Thank you so much for your time and good spirit in sharing

all of this with us. God Bless you!

Deborah

, " claudia.morris "

<claudia.morris@...> wrote:

>

>

>

> Get his carnitine level and aceylcarnitine level checked before

> supplementing. If its normal, you can still try supplements, since

> they are safe, but you would want to know if he has a true

carnitine

> deficiency...and look for the cause. -claudia

>

> > My son will be 5 years old in November, with severe verbal

> apraxia. He

> > has very low muscle tone in his face, feeding problems, speech

> delay,

> > excessive drooling. His upper body has some low muscle tone

too,

> but

> > the OT and PT thinks that we should be ok with 6 months of

> therapy,

> > however his speech therapist thinks that we have years to

come...

> He

> > is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400

Pure

> E +

> > 200 High Gamma + 200 Mixed Tocopherols) per day. I am thinking

in

> > ading Carnitine and Carnaware. Any suggestions as far as

dosage?

> He

> > is responding very well to the Vitamin E, in fact the SLP

> mentioned

> > this week that he is making a lot of progress (that she thought

> would

> > take longer) Kudos to and all the moms that never cease

to

> look

> > for help.

> > Thanks Deborah

> >

>

[Guest guest]

Thanks . I will be calling my pediatrician today to request the

tests. Yes, my main concern is safety with him. Deborah

> >

> > My son will be 5 years old in November, with severe verbal

apraxia. He

> > has very low muscle tone in his face, feeding problems, speech

delay,

> > excessive drooling. His upper body has some low muscle tone

too, but

> > the OT and PT thinks that we should be ok with 6 months of

therapy,

> > however his speech therapist thinks that we have years to

come... He

> > is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400

Pure E +

> > 200 High Gamma + 200 Mixed Tocopherols) per day. I am thinking

in

> > ading Carnitine and Carnaware. Any suggestions as far as

dosage? He

> > is responding very well to the Vitamin E, in fact the SLP

mentioned

> > this week that he is making a lot of progress (that she thought

would

> > take longer) Kudos to and all the moms that never cease

to look

> > for help.

> > Thanks Deborah

> >

>

[Guest guest]

> >

> > Get his carnitine level and aceylcarnitine level checked before

> > supplementing. If its normal, you can still try supplements,

since

> > they are safe, but you would want to know if he has a true

> carnitine

> > deficiency...and look for the cause. -claudia

> >

> > > My son will be 5 years old in November, with severe verbal

> > apraxia. He

> > > has very low muscle tone in his face, feeding problems, speech

> > delay,

> > > excessive drooling. His upper body has some low muscle tone

> too,

> > but

> > > the OT and PT thinks that we should be ok with 6 months of

> > therapy,

> > > however his speech therapist thinks that we have years to

> come...

> > He

> > > is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400

> Pure

> > E +

> > > 200 High Gamma + 200 Mixed Tocopherols) per day. I am

thinking

> in

> > > ading Carnitine and Carnaware. Any suggestions as far as

> dosage?

> > He

> > > is responding very well to the Vitamin E, in fact the SLP

> > mentioned

> > > this week that he is making a lot of progress (that she

thought

> > would

> > > take longer) Kudos to and all the moms that never

cease

> to

> > look

> > > for help.

> > > Thanks Deborah

> > >

> >

>

[Guest guest]

ok, I will try this. So I should give him 800 IU of pure vit E/day + 1 or two

of the following High Gamma supplement ? (This is the one I am using, currently,

I only give him 1 pill per day):

Description of the High Gamma E-200 IU from the Vitamin Shoppe:

Vitamin E (as d-alpha) 200 IU

Vit E 298.5mg

(as D Gamma) 220mg

(as d-beta, delta ) 78.5 mg

Rice Bran Oil 12.5mg

Please let me know! Deborah

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

> >

> > Get his carnitine level and aceylcarnitine level checked before

> > supplementing. If its normal, you can still try supplements,

since

> > they are safe, but you would want to know if he has a true

> carnitine

> > deficiency...and look for the cause. -claudia

> >

> > > My son will be 5 years old in November, with severe verbal

> > apraxia. He

> > > has very low muscle tone in his face, feeding problems, speech

> > delay,

> > > excessive drooling. His upper body has some low muscle tone

> too,

> > but

> > > the OT and PT thinks that we should be ok with 6 months of

> > therapy,

> > > however his speech therapist thinks that we have years to

> come...

> > He

> > > is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400

> Pure

> > E +

> > > 200 High Gamma + 200 Mixed Tocopherols) per day. I am

thinking

> in

> > > ading Carnitine and Carnaware. Any suggestions as far as

> dosage?

> > He

> > > is responding very well to the Vitamin E, in fact the SLP

> > mentioned

> > > this week that he is making a lot of progress (that she

thought

> > would

> > > take longer) Kudos to and all the moms that never

cease

> to

> > look

> > > for help.

> > > Thanks Deborah

> > >

> >

>

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

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

ok, I will try this. So I should give him 800 IU of pure vit E/day + 1 or two

of the following High Gamma supplement ? (This is the one I am using, currently,

I only give him 1 pill per day):

Description of the High Gamma E-200 IU from the Vitamin Shoppe:

Vitamin E (as d-alpha) 200 IU

Vit E 298.5mg

(as D Gamma) 220mg

(as d-beta, delta ) 78.5 mg

Rice Bran Oil 12.5mg

Please let me know! Deborah

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

> >

> > Get his carnitine level and aceylcarnitine level checked before

> > supplementing. If its normal, you can still try supplements,

since

> > they are safe, but you would want to know if he has a true

> carnitine

> > deficiency...and look for the cause. -claudia

> >

> > > My son will be 5 years old in November, with severe verbal

> > apraxia. He

> > > has very low muscle tone in his face, feeding problems, speech

> > delay,

> > > excessive drooling. His upper body has some low muscle tone

> too,

> > but

> > > the OT and PT thinks that we should be ok with 6 months of

> > therapy,

> > > however his speech therapist thinks that we have years to

> come...

> > He

> > > is on 4 Pro EFA's Jr + 1 Pro Epa + 800 IUs of Vitamin E (400

> Pure

> > E +

> > > 200 High Gamma + 200 Mixed Tocopherols) per day. I am

thinking

> in

> > > ading Carnitine and Carnaware. Any suggestions as far as

> dosage?

> > He

> > > is responding very well to the Vitamin E, in fact the SLP

> > mentioned

> > > this week that he is making a lot of progress (that she

thought

> > would

> > > take longer) Kudos to and all the moms that never

cease

> to

> > look

> > > for help.

> > > Thanks Deborah

> > >

> >

>

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

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