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Hi ,

I am sorry if I sounded like I was interested in getting you to either buy or

sell vitamins (personally, I am not fond of multilevel marketing either), like I

said, I just joined to buy them for my son at a discount.

As far as supplementing a child that is fed through a tube, I heard of many

people that fed supplements through the tube, but I am not in a position to

advise you as far as your son's condition. I am just a mom trying to learn from

other parents and pass on what I have learned.

We have tried many therapies with my son too, and I was frustrated with many

of them. I am emotionally and financially drained too.

Supplements are not " miracle pills " . What they do in some cases is improve

the quality of life in some people, in my son's case, his immune system was very

debilitated. And you are right, they are not regulated by the fda, so you have

to be very carefull with what you get. If you are open to one more opinion and

would like to talk to a more knowledgeble person, I know a nutritionist in

Florida that would probably discuss your son's situation with you (and she does

not charge anything). Does your son have low muscle tone? I read that reflux

sometimes is caused by the muscles of the stomach being weak. If he has low

muscle tone, have you ever tested his Carnitine levels? I was surprised when I

tested my son's, his levels were very low and once I supplemented (with a

prescription brand, therefore regulated by the fda and your insurance will pay

for it), his tone improved. For Seizures, when you have a chance, take a look

at carn-aware.com (it is not a networking

marketing), this is a supplement that was developed bu a neurologist. Once

again, I am not playing Dr. here, I am just a mom that has suffered so much

seing my child struggle with normal things in life...

Deborah

JULIE HASSELBERGER wrote:

What happens if you have a child who is not able to eat via mouth...

our son is on Neocate Jr. most other enteral formulas have caused internal

distress. We were told to be cautious regarding supplements because of them not

being fda approved. Years ago we took to a naturopathic doctor, who put

him on natural supplements all supposed to help this and that... and he vomitted

everytime we gave him the supplements.

Everyone of our doctors, including my own naturopath who treats me for

fibromyalgia... have told me that supplementing a child as critically difficult

as is not needed since the neocate provides all of his dietary needs.

He NEVER gets a cold, or a stomach illness... he did just recently have

pneumonia..but aspiration caused it (he has lost his ability to swallow since he

was about 7 years old)... But his ability to bounce back from illness is

strong.. at least for now.

I have thought about whether or not supplementing is needed...and no one seems

to support it except for the network marketing people who are trying to get me

to sell their vitamins. I am in Primerica, so I know all about network

marketing...

It just seems to me that after 2 years of supplements he would have been better.

He is 10 years old now, and we have been on special diets, on natural

supplements, to special clinics, and have tried every therapy on the planet.

None of it prevented the increased in reflux, the decrease in swallow ability,

and the increase in seizures.

We are pretty broke financially, and thankfully medicaid pays for all of his

needs... so paying hundreds dollars for supplements and drinks and potions...

makes my husband angry. It's bad enough that I need so many for my own

fibromyalgia.

is happy, has great skin, is bright and alert.. the neurologist told me

that no degree of vitamins will prevent his problems.

I am not a skeptical person....but all of our medical team, from medical

practice to natural practice tell me not to bother...that he is getting all that

he needs.

Is he? How do we know for sure?? He just kicked a pneumonia and a fever in less

than a week... so his immune system appears to be strong.

, Mom to , age 10 bilateral diffuse polmicrogyria 80% affected

deborah_baccan wrote:

Hi Beth,

My son is 6 years old, and about 20 kg. We started last year per

reccomendation of a biochemist (from Mannatech) at 1/4 tsp 3 times per

day, with meals and before bed, after 21 days, he told me to increase

the dose to 1/2 tsp 4X/day, with every meal and before bed. Maybe you

can start at half of this dose and work yourself up as his body

adjusts. I buy the Classic Ambrotose powder and mix it with his milk,

cereal, yougurt, mac n cheese, juice, just about anything. He also

mentioned that if you buy Granulated Soy Lecithin ( Labs has a

good one) and give it at the same time (also same amount) of the

Ambrotose, it improves its potency.

Talk to the person that sold you the Ambrotose and discuss the cell

memory effect, this means that your child can get the symptoms of a

cold when you start, but this is just the cells recalling any illnesses

that he/she had in the past. The most important thing with Ambrotose

and any other supplement is consistency and continuance. They are not

medicine and it usually takes a while to see benefits. Let me know if

you have any other questions.

Deborah

>

> Hi

> I have purchased tub of ambrotose powder as i'm interested in trying

it

> with Torin. Can someone tell me how much i should be giving Torin

> please? He's about 11kg and is 17 months old. Any suggestions

> concerning dose and method would be great. thanks so much

>

> Beth mum to torin, bilateral PMG (excluding frontal and opcipital

lobes)

>

In the middle of a difficulty lies opportunity.

Einstein, Albert

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Thanks Deborah... thats excellent advice. I AM actually going to take

to his physiatrist (he prescribes the physical therapy, AFOs etc, botox etc)

and see what he thinks.. Personally..I think we all just need 4 weeks in

caribean with warm sun and massages every day... dont I wish.

It gets pretty overwhelming doesnt it. God bless...

Deborah is wrote:

Hi ,

I am sorry if I sounded like I was interested in getting you to either buy or

sell vitamins (personally, I am not fond of multilevel marketing either), like I

said, I just joined to buy them for my son at a discount.

As far as supplementing a child that is fed through a tube, I heard of many

people that fed supplements through the tube, but I am not in a position to

advise you as far as your son's condition. I am just a mom trying to learn from

other parents and pass on what I have learned.

We have tried many therapies with my son too, and I was frustrated with many of

them. I am emotionally and financially drained too.

Supplements are not " miracle pills " . What they do in some cases is improve the

quality of life in some people, in my son's case, his immune system was very

debilitated. And you are right, they are not regulated by the fda, so you have

to be very carefull with what you get. If you are open to one more opinion and

would like to talk to a more knowledgeble person, I know a nutritionist in

Florida that would probably discuss your son's situation with you (and she does

not charge anything). Does your son have low muscle tone? I read that reflux

sometimes is caused by the muscles of the stomach being weak. If he has low

muscle tone, have you ever tested his Carnitine levels? I was surprised when I

tested my son's, his levels were very low and once I supplemented (with a

prescription brand, therefore regulated by the fda and your insurance will pay

for it), his tone improved. For Seizures, when you have a chance, take a look at

carn-aware.com (it is not a networking

marketing), this is a supplement that was developed bu a neurologist. Once

again, I am not playing Dr. here, I am just a mom that has suffered so much

seing my child struggle with normal things in life...

Deborah

JULIE HASSELBERGER wrote:

What happens if you have a child who is not able to eat via mouth... our son is

on Neocate Jr. most other enteral formulas have caused internal distress. We

were told to be cautious regarding supplements because of them not being fda

approved. Years ago we took to a naturopathic doctor, who put him on

natural supplements all supposed to help this and that... and he vomitted

everytime we gave him the supplements.

Everyone of our doctors, including my own naturopath who treats me for

fibromyalgia... have told me that supplementing a child as critically difficult

as is not needed since the neocate provides all of his dietary needs.

He NEVER gets a cold, or a stomach illness... he did just recently have

pneumonia..but aspiration caused it (he has lost his ability to swallow since he

was about 7 years old)... But his ability to bounce back from illness is

strong.. at least for now.

I have thought about whether or not supplementing is needed...and no one seems

to support it except for the network marketing people who are trying to get me

to sell their vitamins. I am in Primerica, so I know all about network

marketing...

It just seems to me that after 2 years of supplements he would have been better.

He is 10 years old now, and we have been on special diets, on natural

supplements, to special clinics, and have tried every therapy on the planet.

None of it prevented the increased in reflux, the decrease in swallow ability,

and the increase in seizures.

We are pretty broke financially, and thankfully medicaid pays for all of his

needs... so paying hundreds dollars for supplements and drinks and potions...

makes my husband angry. It's bad enough that I need so many for my own

fibromyalgia.

is happy, has great skin, is bright and alert.. the neurologist told me

that no degree of vitamins will prevent his problems.

I am not a skeptical person....but all of our medical team, from medical

practice to natural practice tell me not to bother...that he is getting all that

he needs.

Is he? How do we know for sure?? He just kicked a pneumonia and a fever in less

than a week... so his immune system appears to be strong.

, Mom to , age 10 bilateral diffuse polmicrogyria 80% affected

deborah_baccan wrote:

Hi Beth,

My son is 6 years old, and about 20 kg. We started last year per

reccomendation of a biochemist (from Mannatech) at 1/4 tsp 3 times per

day, with meals and before bed, after 21 days, he told me to increase

the dose to 1/2 tsp 4X/day, with every meal and before bed. Maybe you

can start at half of this dose and work yourself up as his body

adjusts. I buy the Classic Ambrotose powder and mix it with his milk,

cereal, yougurt, mac n cheese, juice, just about anything. He also

mentioned that if you buy Granulated Soy Lecithin ( Labs has a

good one) and give it at the same time (also same amount) of the

Ambrotose, it improves its potency.

Talk to the person that sold you the Ambrotose and discuss the cell

memory effect, this means that your child can get the symptoms of a

cold when you start, but this is just the cells recalling any illnesses

that he/she had in the past. The most important thing with Ambrotose

and any other supplement is consistency and continuance. They are not

medicine and it usually takes a while to see benefits. Let me know if

you have any other questions.

Deborah

>

> Hi

> I have purchased tub of ambrotose powder as i'm interested in trying

it

> with Torin. Can someone tell me how much i should be giving Torin

> please? He's about 11kg and is 17 months old. Any suggestions

> concerning dose and method would be great. thanks so much

>

> Beth mum to torin, bilateral PMG (excluding frontal and opcipital

lobes)

>

In the middle of a difficulty lies opportunity.

Einstein, Albert

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Lori,

No they are not the same thing. Your son needs both of them, they are

different supplements (actually my entire family takes omegas). Omega 3, 6, 9

are essential fatty acids (essential means that our bodies cannot produce them,

so they must be ingested through our diet), unfortunatelly, nowadays it is

almost impossible top injest the amount required due to our eating habits,

farming, etc.

I buy mine from Nordic Naturals, which from what I heard is one of the safest

brands (pharmaceutical grade), pay attention to this, because they derive from

fish, there is a problem with Mercury contamination (vitacost.com has the best

price!).

Ambrotose is another category of nutrients, called glyconutrients. They are

the 8 simple sugars that our bodies need for proper cell communication. Take a

look when you have a chance at www.glyconutrients.org. If you are really

interested I can mail you some educational cds. This is the only supplement I

get from Mannatech (they are pricey...)

Let me know.

Deborah

Lorilynn30@... wrote:

Deborah,

Very interesting. Can you explain Ambrotose? I just bought liquid DHA

(Omega 3 6 9 Junior) that I am adding in my son's bottle. 1/2 teaspoon a day.

Is it like DHA? This completely intrigues me. I just heard of DHA being

used with Alzheimer patients 2 days ago on the evening news. Thank you so much

for your input on this subject.

Sincerely,

Lori Mommy to Tyger age 4

**************************************Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

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Hi deborah

Can i give him too much? eg. how important that dosages are accurate?

I just always feel a little " funny " when i give Torin medication etc

so always err on the small sides of dosages - even with panadol. I've

given him a couple of 1/4 tsp over the passed couple of days but i'm

not sure if i should, or if its safe to jump straight into your

recommended dosages you mentioned in a previous post.

Thanks for your advice

Beth mum to Torin

>

> Deborah,

> Very interesting. Can you explain Ambrotose? I just bought liquid

DHA

> (Omega 3 6 9 Junior) that I am adding in my son's bottle. 1/2

teaspoon a day.

> Is it like DHA? This completely intrigues me. I just heard of DHA

being

> used with Alzheimer patients 2 days ago on the evening news. Thank

you so much

> for your input on this subject.

> Sincerely,

> Lori Mommy to Tyger age 4

>

> **************************************Check out AOL's list of

2007's hottest

> products.

> (http://money.aol.com/special/hot-products-2007?

NCID=aoltop00030000000001)

>

>

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Beth,

I always start supplements slowly and one at a time. That way you can see you

your child is adjusting and measure what is working and what is not. No toxidity

have been ever reported with Ambrotose, however I would start one a day for a

few days, increase to 2, 3 and 4 and keep increasing the dose. I was always

told that for Ambrotose to work you have to take it consistently. You should

keep the dosages acurate too. You must remeber that this is not medication is a

supplement based on 8 simple sugars. Did you visit the website

www.glyconutrients.org? It is under construction, but they have some usefull

information there. I will verify if the educational materials are available to

anyone, and if so, I will provide you the website, you may will feel more

confortable hearing the information from Drs. They are inexpensive and you will

be amazed with the knowledge... I am not familiar with panadol, so I can't talk

about that.

Feel free to email me if you have more questions.

Deborah

diltor1 wrote:

Hi deborah

Can i give him too much? eg. how important that dosages are accurate?

I just always feel a little " funny " when i give Torin medication etc

so always err on the small sides of dosages - even with panadol. I've

given him a couple of 1/4 tsp over the passed couple of days but i'm

not sure if i should, or if its safe to jump straight into your

recommended dosages you mentioned in a previous post.

Thanks for your advice

Beth mum to Torin

>

> Deborah,

> Very interesting. Can you explain Ambrotose? I just bought liquid

DHA

> (Omega 3 6 9 Junior) that I am adding in my son's bottle. 1/2

teaspoon a day.

> Is it like DHA? This completely intrigues me. I just heard of DHA

being

> used with Alzheimer patients 2 days ago on the evening news. Thank

you so much

> for your input on this subject.

> Sincerely,

> Lori Mommy to Tyger age 4

>

> **************************************Check out AOL's list of

2007's hottest

> products.

> (http://money.aol.com/special/hot-products-2007?

NCID=aoltop00030000000001)

>

>

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