RE: Vitamin E ? Glycolax ?? -e -long

[Guest guest]

Hi e

My daughter has been dealing with some level of constipation for years since

she went on medications. She is now 7. 2 yrs ago I started with mineral oil

per pedi. Within 1 week or so of 1tbsp/day she was unable to walk without

crying out and tremored all over. She has seizures and a dx with rare nuero

condition called Alternating Hemiplegia of Childhood. She had a major seizure

about day10. I was certain I had washed out her meds.

Waited 6 mos b/c scared and tried daily miralax/glycolax (generic). Prior to

this I had used miralax but took too long to work, gave her bad rash once it did

and then I would back off use only to find us back in same boat with

constipation. After 10 days-2wks of daily use of 1/2 capful, constipation better

but she started having eye deviations to the right and speech slurring/drooling

which lasted for hours (usually starting in late afternoon-I don't know why)

until she was able to fall asleep. She did this 3 nights in a row and took her

to ER 3rd day and we waiting for 2.5 hrs and were still not seen. Finally I

went home to get her to sleep. Stopped Mirilax and no eye deviations the next

day. Her neuro didn't believe it was the miralax causing her eye deviation

suggested treating them as seizures next time they happened and giving her

valium.

ANother 6 months later went to pedi GI at big city teaching hospital to see

if something could help us with constipation. They suggested lactolose as it

was natural, benign. After first bottle finished (about 10 days) she started

walking in circles involuntarily (still conscious), had eye deviations, some

tremors and mouth involvement. Called Neuro and GI who both didn't think it was

the lactalose. I stopped it immediately and symptoms went away just like

before. I even videotaped the events to show and document.

SInce then we still are having constant constipation issues. I am trying mag

citrate which she tolerated well but she can't stand taste. I bought product

called natural calm which is in powder form and is mixed with hot water. I add

sugar to this and it tastes like lemonade. I only hope adding the sugar doesn't

counter the mag citrate. However, I was recently cautioned by our neuro not to

go over 300mg/day as it can upset electrolytes.

Now I an nervous again so I am spacing out it's use. Still no great cure. I

know I have heard many kids (in fact quite alot of kids) are using miralax twith

great success. My child has a reare condition taht is not understood and she

has always been extreemely sensitive to body changes. It often seemed she would

become dehydrated/constipated days before her cold symptoms even showed up.

Sorry so long but thought you should know she has other medical issues that

complicated picture for her. THere is also a group for miralax users that

have had problems. It was at least good to know that others have had issues and

I wasn't imagining the correlation even if my neuro and GI didn't believe me.

Perhaps you should hook up iwth a good pediatric GI person to work with.

Good luck

KRISTINE OBRIEN <kpo_105@...> wrote:

,

I just read your post and wanted to ask you about your experience with Glycolax.

My Dr. prescribed it for my 3.5 yr son(PDDNOS/Verbal Dyspraxia) I have increased

Fiber with foods and nothing is helping. I was going to start the Glycolax but I

just saw your comment.

Any advice is welcomed

e

kcventi <kcventi@...> wrote:

I picked up Vit E 400 IUs called Egems Elite from Carlson.

Each capsule also includes d-Gamma tocopheril 100mg

d-Beta and d-Delta tocopherol 40mgs and something called total tocotrienols

20mgs.

Should I be looking for straight gamma and straight alpha, assuming there is

such a thing?

Also, I have not started the Omega 3/6 yet b/c can't find it locally so will

have to order. Should I start the vit E alone or should I wait and do in combo.

I like to start slow with anything I add to my daughter's intake b/c in the past

even very seemingly benign treatments like miralax/glucolax, etc have provoked

bizarre neuro issues.

thanks so much for input of vit E.

karen v

<claudiamorris@...> wrote:

Keep the capsules, stick with what's working.

My son improved on the following:

Add vit E (alpha-d-tocophorol) 400 IU

gamma tocophorol 200-300 mg (there is often some alpha in this

preparation...don't worry about it, just give one capsule of each once a

day, or give an alpha in the am and gamma in PM...not sure which way is

better.

Again this is all uncharted waters. This is a bit of an awkward spot for me,

because I don't want to give " medical advice " ...for children I don't know,

based on absolutely no scientific data in apraxia. That goes against my

normal practices. So - I really can't make " recommendations " although I'm

getting a large number of emails asking me to do just that. But I can tell

you my story as a mom of an apraxic child who has made an amazing recovery.

At the same time, I can tell you from everything I have read and from the

vitamin E experts I have tortured with my son's story to get more

information about vit E...the above doses are safe. You should talk to your

pediatrician about this and let them know what you are doing if you are

going to supplement. Even better to get a nutritionalist involved if it

seems to be working. If your child gets better with fish oil and vitamin

E...there is some underlying problem with the availability of these and

other vitamins/nutrients/fatty acids in your child. There is no magic to

fish oil and nutrition. If it works, your child has a deficiency for

whatever reason. Our children, I now believe - do have a physiological

explanation for both their underlying condition and the response to these

interventions. We are probably just looking at the tip of the iceburgh.

If reports of families seeing dramatic surges in their children start to

come in, then maybe we can write up a series case report and get it

published in a medical journal that can provide reference for the clinicians

taking care of our kids. Those who go this route, please post your

observations (both positive negative, or even if there is no change). Make

sure the subject is something like " Vitamin E response " (or no response)

etc, since there are just so many emails to sort through that I don't want

to miss them. In the meantime we are back to anecdotal info. But it was

's story about Tanner that led to our trial of fish oil, I wouldn't be

feeling like I won the lottery. I started supplements with no expectations

except that it " couldn't hurt " - only to find myself with a child

recovering from what is some serious but unrecognized nutritional

deficiencies to cause such serious neurological symptoms. -

[ ] Vitamin E ?

How much vitamin E should be added? Is the vitamin E in the Nordic

Naturals the synthetic type? My daughter is 32 months old and has had

success with 2 omega 3/6/9 and 1 EPA given twice a day. She takes the

whole pill -- chews them up for a while and swallows the capsules.

Given what she is already taking, that would be 120 I.U. daily of

Vitamin E. Should I not give her the capsule and just squirt the

liquid into her mouth? What would you suggest?

Thank you,

Suzanne

[Guest guest]

Hi e

My daughter has been dealing with some level of constipation for years since

she went on medications. She is now 7. 2 yrs ago I started with mineral oil

per pedi. Within 1 week or so of 1tbsp/day she was unable to walk without

crying out and tremored all over. She has seizures and a dx with rare nuero

condition called Alternating Hemiplegia of Childhood. She had a major seizure

about day10. I was certain I had washed out her meds.

Waited 6 mos b/c scared and tried daily miralax/glycolax (generic). Prior to

this I had used miralax but took too long to work, gave her bad rash once it did

and then I would back off use only to find us back in same boat with

constipation. After 10 days-2wks of daily use of 1/2 capful, constipation better

but she started having eye deviations to the right and speech slurring/drooling

which lasted for hours (usually starting in late afternoon-I don't know why)

until she was able to fall asleep. She did this 3 nights in a row and took her

to ER 3rd day and we waiting for 2.5 hrs and were still not seen. Finally I

went home to get her to sleep. Stopped Mirilax and no eye deviations the next

day. Her neuro didn't believe it was the miralax causing her eye deviation

suggested treating them as seizures next time they happened and giving her

valium.

ANother 6 months later went to pedi GI at big city teaching hospital to see

if something could help us with constipation. They suggested lactolose as it

was natural, benign. After first bottle finished (about 10 days) she started

walking in circles involuntarily (still conscious), had eye deviations, some

tremors and mouth involvement. Called Neuro and GI who both didn't think it was

the lactalose. I stopped it immediately and symptoms went away just like

before. I even videotaped the events to show and document.

SInce then we still are having constant constipation issues. I am trying mag

citrate which she tolerated well but she can't stand taste. I bought product

called natural calm which is in powder form and is mixed with hot water. I add

sugar to this and it tastes like lemonade. I only hope adding the sugar doesn't

counter the mag citrate. However, I was recently cautioned by our neuro not to

go over 300mg/day as it can upset electrolytes.

Now I an nervous again so I am spacing out it's use. Still no great cure. I

know I have heard many kids (in fact quite alot of kids) are using miralax twith

great success. My child has a reare condition taht is not understood and she

has always been extreemely sensitive to body changes. It often seemed she would

become dehydrated/constipated days before her cold symptoms even showed up.

Sorry so long but thought you should know she has other medical issues that

complicated picture for her. THere is also a group for miralax users that

have had problems. It was at least good to know that others have had issues and

I wasn't imagining the correlation even if my neuro and GI didn't believe me.

Perhaps you should hook up iwth a good pediatric GI person to work with.

Good luck

KRISTINE OBRIEN <kpo_105@...> wrote:

,

I just read your post and wanted to ask you about your experience with Glycolax.

My Dr. prescribed it for my 3.5 yr son(PDDNOS/Verbal Dyspraxia) I have increased

Fiber with foods and nothing is helping. I was going to start the Glycolax but I

just saw your comment.

Any advice is welcomed

e

kcventi <kcventi@...> wrote:

I picked up Vit E 400 IUs called Egems Elite from Carlson.

Each capsule also includes d-Gamma tocopheril 100mg

d-Beta and d-Delta tocopherol 40mgs and something called total tocotrienols

20mgs.

Should I be looking for straight gamma and straight alpha, assuming there is

such a thing?

Also, I have not started the Omega 3/6 yet b/c can't find it locally so will

have to order. Should I start the vit E alone or should I wait and do in combo.

I like to start slow with anything I add to my daughter's intake b/c in the past

even very seemingly benign treatments like miralax/glucolax, etc have provoked

bizarre neuro issues.

thanks so much for input of vit E.

karen v

<claudiamorris@...> wrote:

Keep the capsules, stick with what's working.

My son improved on the following:

Add vit E (alpha-d-tocophorol) 400 IU

gamma tocophorol 200-300 mg (there is often some alpha in this

preparation...don't worry about it, just give one capsule of each once a

day, or give an alpha in the am and gamma in PM...not sure which way is

better.

Again this is all uncharted waters. This is a bit of an awkward spot for me,

because I don't want to give " medical advice " ...for children I don't know,

based on absolutely no scientific data in apraxia. That goes against my

normal practices. So - I really can't make " recommendations " although I'm

getting a large number of emails asking me to do just that. But I can tell

you my story as a mom of an apraxic child who has made an amazing recovery.

At the same time, I can tell you from everything I have read and from the

vitamin E experts I have tortured with my son's story to get more

information about vit E...the above doses are safe. You should talk to your

pediatrician about this and let them know what you are doing if you are

going to supplement. Even better to get a nutritionalist involved if it

seems to be working. If your child gets better with fish oil and vitamin

E...there is some underlying problem with the availability of these and

other vitamins/nutrients/fatty acids in your child. There is no magic to

fish oil and nutrition. If it works, your child has a deficiency for

whatever reason. Our children, I now believe - do have a physiological

explanation for both their underlying condition and the response to these

interventions. We are probably just looking at the tip of the iceburgh.

If reports of families seeing dramatic surges in their children start to

come in, then maybe we can write up a series case report and get it

published in a medical journal that can provide reference for the clinicians

taking care of our kids. Those who go this route, please post your

observations (both positive negative, or even if there is no change). Make

sure the subject is something like " Vitamin E response " (or no response)

etc, since there are just so many emails to sort through that I don't want

to miss them. In the meantime we are back to anecdotal info. But it was

's story about Tanner that led to our trial of fish oil, I wouldn't be

feeling like I won the lottery. I started supplements with no expectations

except that it " couldn't hurt " - only to find myself with a child

recovering from what is some serious but unrecognized nutritional

deficiencies to cause such serious neurological symptoms. -

[ ] Vitamin E ?

How much vitamin E should be added? Is the vitamin E in the Nordic

Naturals the synthetic type? My daughter is 32 months old and has had

success with 2 omega 3/6/9 and 1 EPA given twice a day. She takes the

whole pill -- chews them up for a while and swallows the capsules.

Given what she is already taking, that would be 120 I.U. daily of

Vitamin E. Should I not give her the capsule and just squirt the

liquid into her mouth? What would you suggest?

Thank you,

Suzanne