Re: Fwd: Newbie seeking advice

[Guest guest]

Hello ,

Thank you so much for the response.

We are on CFGF diet but it hasn't given us any miracles

I didn't test for celiac disease but I do have a test kit at home that I

need to do for a leaky gut.

Actually I never did a direct carnitine test. In the serum fatty acid test,

my child's pentadecanoic acid (odd chain) showed as very high above range

and our nutrionist said that that is carnitine defiency. Also, muscle tone

is bit low and my child has to work harder to do the same things as peers.

He tires easily and gets hungry fast (he eats well). It just struck me a

carnitine and/or fat processing problem. The next time we draw blood I will

be sure to include carnitine (is there a specific name?) test. For I now I

decided to supplement about 400 mg/day - he is 40 lbs. We are still at

250mg/day and I am working up.

Thank you so much for the information about the fish oils and sources. I

will look them up. Am I missing anything else that I should be giving?

Best,

Smita

On 11/26/06, claudia.morris <claudia.morris@...> wrote:

>

>

> Dear Smita,

>

> How deficient in carnitine? Your pediatrician should write you a

> perscription for levocarnitine liquid, and dose 25-50 mg/kg/day

> divided into 3 doses, depending on the severity of the deficiency.

> Starting with 10 mg/kg/dose is a good place to start and easy to

> calculate.

>

> Has your son been tested for celiac disease?

>

> Cut and paste from previous post below:

> Consider below: I buy on-line from Nordic naturals

>

> Supplement with omega 3/6/9 (2 caps) + 1 pro-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 (I use Jarrow brand but others are

> fine)

>

> Dr. Ron's Ulta E is soy free...and very expensive. There are also

> other forms of " Dry E " that are soy free. Some of the gamma brands

> are from rice rather than soy, but most are from soy. We also have

> rice allergies in our house, so finding a safe vit e was difficult

> at first.

>

> Consider comprehensive multivit. Marilyn Agin recommended the

> following to

> me: Super NuThera from Kirkman's Labs

> http://www.kirkmanlabs.com/products/multivitamins/super_nuthera/snt_3

> 07_454.

> html.

>

> 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.

>

> Hello Parents,

>

> I am so glad I found this group. My child just turned 4. His ST

> suspects

> apraxia. He definetly has problems with articulation and in making

> words

> reproducibly from sounds. His speech is understood by context and

> mostly by

> me. He also deletes consonants at the end of words. He has

> problems with

> multisyllable words and in stringing words into sentences. He prefers

> speaking in sentences over words (with great pauses in between to

> retrieve

> all the words to say them). So as you see, speech production is very

> hard

> work and inefficient while there is intent. He is struggling (along

> with

> his parents).

>

> I would like to make sure that I am giving the correct amounts of

> fish oil

> and related supplements to help with speech sound and coordination

> and would

> sincerely appreciate your input and insight.

>

> I looked through the files and some messages and came up the

> following

> recommendations:

>

> - EPA: 558 mg

> DHA: 174 mg

> GLA: 60 mg •

>

>

> - Vitamin E as an antioxidant: 400IU of alpha tocopherol?/day

> along

> with some mixed tocopherols?- how much?

>

>

> - L-Carnitine for lipid processsing if deficient (which he is): ie

> 25-50 mg/kg/day divided

> into 3 doses.

>

> Are they correct? We use Vital Nutrients Fish Oil (only for now- it

> is too

> expensive) and NNaturals Cod Liver Oil (I like it for the VitA).

> Until

> recently I was using Pro-DHA. But the above ratios are not

> maintained with

> our fish oils, I will work towards it (my child is 40lbs). We don't

> have a

> source for GLA- is borage oil a good source? Also, can anyone give

> me a

> recommendation for VitE? We are using Freeda VitE but I would like

> use

> something else, hopefully soy-free if possible. Also a source for

> L-Carnitine and sources for fish oil with high EPA/DHA ratios will be

> helpful.

>

> Any input about the doses and the effects it had on your child, how

> soon you

> saw something positive or negative and any of your experience will

> be of

> great interest to me.

>

> Thanks a lot in advance,

> Smita

>

>

>

[Guest guest]

Hello ,

Thank you so much for the response.

We are on CFGF diet but it hasn't given us any miracles

I didn't test for celiac disease but I do have a test kit at home that I

need to do for a leaky gut.

Actually I never did a direct carnitine test. In the serum fatty acid test,

my child's pentadecanoic acid (odd chain) showed as very high above range

and our nutrionist said that that is carnitine defiency. Also, muscle tone

is bit low and my child has to work harder to do the same things as peers.

He tires easily and gets hungry fast (he eats well). It just struck me a

carnitine and/or fat processing problem. The next time we draw blood I will

be sure to include carnitine (is there a specific name?) test. For I now I

decided to supplement about 400 mg/day - he is 40 lbs. We are still at

250mg/day and I am working up.

Thank you so much for the information about the fish oils and sources. I

will look them up. Am I missing anything else that I should be giving?

Best,

Smita

On 11/26/06, claudia.morris <claudia.morris@...> wrote:

>

>

> Dear Smita,

>

> How deficient in carnitine? Your pediatrician should write you a

> perscription for levocarnitine liquid, and dose 25-50 mg/kg/day

> divided into 3 doses, depending on the severity of the deficiency.

> Starting with 10 mg/kg/dose is a good place to start and easy to

> calculate.

>

> Has your son been tested for celiac disease?

>

> Cut and paste from previous post below:

> Consider below: I buy on-line from Nordic naturals

>

> Supplement with omega 3/6/9 (2 caps) + 1 pro-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 (I use Jarrow brand but others are

> fine)

>

> Dr. Ron's Ulta E is soy free...and very expensive. There are also

> other forms of " Dry E " that are soy free. Some of the gamma brands

> are from rice rather than soy, but most are from soy. We also have

> rice allergies in our house, so finding a safe vit e was difficult

> at first.

>

> Consider comprehensive multivit. Marilyn Agin recommended the

> following to

> me: Super NuThera from Kirkman's Labs

> http://www.kirkmanlabs.com/products/multivitamins/super_nuthera/snt_3

> 07_454.

> html.

>

> 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.

>

> Hello Parents,

>

> I am so glad I found this group. My child just turned 4. His ST

> suspects

> apraxia. He definetly has problems with articulation and in making

> words

> reproducibly from sounds. His speech is understood by context and

> mostly by

> me. He also deletes consonants at the end of words. He has

> problems with

> multisyllable words and in stringing words into sentences. He prefers

> speaking in sentences over words (with great pauses in between to

> retrieve

> all the words to say them). So as you see, speech production is very

> hard

> work and inefficient while there is intent. He is struggling (along

> with

> his parents).

>

> I would like to make sure that I am giving the correct amounts of

> fish oil

> and related supplements to help with speech sound and coordination

> and would

> sincerely appreciate your input and insight.

>

> I looked through the files and some messages and came up the

> following

> recommendations:

>

> - EPA: 558 mg

> DHA: 174 mg

> GLA: 60 mg •

>

>

> - Vitamin E as an antioxidant: 400IU of alpha tocopherol?/day

> along

> with some mixed tocopherols?- how much?

>

>

> - L-Carnitine for lipid processsing if deficient (which he is): ie

> 25-50 mg/kg/day divided

> into 3 doses.

>

> Are they correct? We use Vital Nutrients Fish Oil (only for now- it

> is too

> expensive) and NNaturals Cod Liver Oil (I like it for the VitA).

> Until

> recently I was using Pro-DHA. But the above ratios are not

> maintained with

> our fish oils, I will work towards it (my child is 40lbs). We don't

> have a

> source for GLA- is borage oil a good source? Also, can anyone give

> me a

> recommendation for VitE? We are using Freeda VitE but I would like

> use

> something else, hopefully soy-free if possible. Also a source for

> L-Carnitine and sources for fish oil with high EPA/DHA ratios will be

> helpful.

>

> Any input about the doses and the effects it had on your child, how

> soon you

> saw something positive or negative and any of your experience will

> be of

> great interest to me.

>

> Thanks a lot in advance,

> Smita

>

>

>