Re: , Am I going too fast with the supplements?

[Guest guest]

I used to be a pediatric sugery nurse in Chicago (before children). Try

pineapple juice....keeps them loose!!!! And it tastes good....the real fruit or

the real juice. Start with 30cc....three times a day. Your right. The

hirschprungs takes precident. If you get backed up, he'll be absorbing all the

toxins.....catch 22..... good luck!!!! The omega vitamins will help too...dian

kane

<kimlentz@...> wrote: Hi and other Apraxia

Mommies and Daddies! I started my son,

who will be 4 July 27th, on supplements the middle of May (about a

month ago). I immediately started with 2 EFA and 1 EPA and 400 IU

Vit E in the morning after breakfast. Then this past Sunday I added

a second dose of 2 EFA and 1 EPA and 200 IU Vit E after dinner. I

also started probiotics Monday as well as 125 mg Magnesium. I'm

trying to get him off the Miralax since everyone seems to think it is

so bad. He has been on it a year for bowel issues due to

Hirschsprung's Disease. Today I bought some pear and papaya nectars

and I'm trying that. If it doesn't work I will have to go back to the

Miralax I'm afraid.

So my question is...am I going too fast with these supplements (fish

oil and vit E in particular)? Should I back track a little and

reduce the dosing? I have recently seen posts that suggest waiting 6

months and just adding one capsule at a time, so now I'm confused. I

sure don't want to hurt him by adding these things too fast. Since I

added the second dose after dinner, he hasn't been able to fall

asleep until very late. I'm hoping that will resolve itself when his

system adjusts, but if I should reduce the supplements and go slower

then I will do that. Please advise!!!

Thanks so much!

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

Boardwalk for $500? In 2007? Ha!

Play Monopoly Here and Now (it's updated for today's economy) at Games.

[Guest guest]

Hi Dian, thanks for the reply. My poor little guy has had so many

severe diaper rashes that he is petrified of pooping. In fact, since

I stopped the Miralax the other night after everyone freaked me out

about it, he now has a horrible diaper rash (skin is broken down and

bleeding) because he hasn't emptied. The nice thing about the Miralax

is that it made his BM's soft such that he had no pain passing them

and usually did so at night while he was sleeping. If he feels the

urge to poop during the day he fights it. The thing I worry about

with the pineapple juice is that he is soooo sensitive to citrus. If

he has just 4 oz of orange juice it causes his bottom to break out.

I was hoping that the pear nectar would work and not be so acidic.

Any ideas on that? Have you heard bad things about Miralax too? My

son's GI put us on it a year ago and honestly it has been the best

thing to ever happen to us. Prior to the Miralax my son was

constantly in pain and rarely had skin on his bottom. This is common

for kids with Hirschsprung's, and most the kids I know are on a

regimine of daily Miralax or similar. But, now I'm afraid of it after

everyone was discussing how bad it is. I know for a fact that the

Miralax has not caused my son's apraxia though because he started it

well after his problems began. I just don't know what to do

now...when he is in constant pain he can't learn because he is

constantly focused on the pain...I fear I have no alternative to

Miralax...Sigh!

Any advise on the rate I'm giving supplements?

Thanks again!

Hi and other

Apraxia Mommies and Daddies! I started my son,

> who will be 4 July 27th, on supplements the middle of May (about a

> month ago). I immediately started with 2 EFA and 1 EPA and 400 IU

> Vit E in the morning after breakfast. Then this past Sunday I added

> a second dose of 2 EFA and 1 EPA and 200 IU Vit E after dinner. I

> also started probiotics Monday as well as 125 mg Magnesium. I'm

> trying to get him off the Miralax since everyone seems to think it

is

> so bad. He has been on it a year for bowel issues due to

> Hirschsprung's Disease. Today I bought some pear and papaya nectars

> and I'm trying that. If it doesn't work I will have to go back to

the

> Miralax I'm afraid.

>

> So my question is...am I going too fast with these supplements

(fish

> oil and vit E in particular)? Should I back track a little and

> reduce the dosing? I have recently seen posts that suggest waiting

6

> months and just adding one capsule at a time, so now I'm confused.

I

> sure don't want to hurt him by adding these things too fast. Since

I

> added the second dose after dinner, he hasn't been able to fall

> asleep until very late. I'm hoping that will resolve itself when

his

> system adjusts, but if I should reduce the supplements and go

slower

> then I will do that. Please advise!!!

>

> Thanks so much!

>

>

>

>

>

>

>

> ---------------------------------

> Boardwalk for $500? In 2007? Ha!

> Play Monopoly Here and Now (it's updated for today's economy) at

Games.

>

>

[Guest guest]

In my son's case it was leaky gut. Do a google " leaky gut " . Omega 3,

magnesium and POM juice have helped in my sons case.

www.coromega.com

www.pomwonderful.com

Epsom salt in the bath really helped him relax so he could sleep

through the night.

all the best,

Joanne

[Guest guest]

It sounds like your child may be having problems with oxalic acid.

Read more about it here:

http://www.greatplainslaboratory.com/oxalates/oxal-test.pdf

Miralax can be metabolised in the body just like ethylene glycol --

which if you look up antifreeze poisoning you'll see that it causes

oxalate crystals to form leading to kidney failure.

I used a multifaceted approach to get my son off of miralax

Magnesium citrate (I had to go up to 1000mg per day for a month -

now at 300-400mg/day)

Vitamin C

Senna (at times)

Fruit juices

Fish oil

Flax oil

senna

cod liver oil

If I had was where I was a year ago (which is where you are) I would

have tried more homeopathic remedies, added vitamin K2, used high

vitamin cod liver oil, removed all calcium supplements, added

phosphatidyl choline, added VSL#3, and last but not least - taken

the blinder off a little earlier (it took be several months) to the

fact that he might be well served by looking at the recovery

protocol that was being used (DAN) for autistic spectrum disorder.

My son reacted very emotionally to the addition of Vitamin E --

which now makes sense -- it helped to release more of the calcium

oxalate build up, which led to too much calcium at the cellular

level.

HTH

Hi and other

> Apraxia Mommies and Daddies! I started my son,

> > who will be 4 July 27th, on supplements the middle of May (about

a

> > month ago). I immediately started with 2 EFA and 1 EPA and 400

IU

> > Vit E in the morning after breakfast. Then this past Sunday I

added

> > a second dose of 2 EFA and 1 EPA and 200 IU Vit E after dinner.

I

> > also started probiotics Monday as well as 125 mg Magnesium. I'm

> > trying to get him off the Miralax since everyone seems to think

it

> is

> > so bad. He has been on it a year for bowel issues due to

> > Hirschsprung's Disease. Today I bought some pear and papaya

nectars

> > and I'm trying that. If it doesn't work I will have to go back

to

> the

> > Miralax I'm afraid.

> >

> > So my question is...am I going too fast with these supplements

> (fish

> > oil and vit E in particular)? Should I back track a little and

> > reduce the dosing? I have recently seen posts that suggest

waiting

> 6

> > months and just adding one capsule at a time, so now I'm

confused.

> I

> > sure don't want to hurt him by adding these things too fast.

Since

> I

> > added the second dose after dinner, he hasn't been able to fall

> > asleep until very late. I'm hoping that will resolve itself when

> his

> > system adjusts, but if I should reduce the supplements and go

> slower

> > then I will do that. Please advise!!!

> >

> > Thanks so much!

> >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Boardwalk for $500? In 2007? Ha!

> > Play Monopoly Here and Now (it's updated for today's economy) at

> Games.

> >

> >

[Guest guest]

Hi Dian and :

Have you tried white grape juice? My son was also prescribed

Miralax, but I used Pear nectar and that helped some, but he still

occasionally got constipated. I started giving him white grape juice

every day and that has helped keep him regular.

Also look into POM wonderful...there is some messages in the archives

from about POM wonderful.

Tina

Hi and other

> Apraxia Mommies and Daddies! I started my son,

> > who will be 4 July 27th, on supplements the middle of May (about

a

> > month ago). I immediately started with 2 EFA and 1 EPA and 400 IU

> > Vit E in the morning after breakfast. Then this past Sunday I

added

> > a second dose of 2 EFA and 1 EPA and 200 IU Vit E after dinner. I

> > also started probiotics Monday as well as 125 mg Magnesium. I'm

> > trying to get him off the Miralax since everyone seems to think

it

> is

> > so bad. He has been on it a year for bowel issues due to

> > Hirschsprung's Disease. Today I bought some pear and papaya

nectars

> > and I'm trying that. If it doesn't work I will have to go back to

> the

> > Miralax I'm afraid.

> >

> > So my question is...am I going too fast with these supplements

> (fish

> > oil and vit E in particular)? Should I back track a little and

> > reduce the dosing? I have recently seen posts that suggest

waiting

> 6

> > months and just adding one capsule at a time, so now I'm

confused.

> I

> > sure don't want to hurt him by adding these things too fast.

Since

> I

> > added the second dose after dinner, he hasn't been able to fall

> > asleep until very late. I'm hoping that will resolve itself when

> his

> > system adjusts, but if I should reduce the supplements and go

> slower

> > then I will do that. Please advise!!!

> >

> > Thanks so much!

> >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Boardwalk for $500? In 2007? Ha!

> > Play Monopoly Here and Now (it's updated for today's economy) at

> Games.

> >

> >

[Guest guest]

My daughter had problems similar to your child's and we put her on a

gluten-free and casein-free diet. Her constipation disappeared

three days after we took her off of all dairy products. That was

seven years ago and she hasn't had a problem since then. Good Luck!

Hi and other

> > Apraxia Mommies and Daddies! I started my son,

> > > who will be 4 July 27th, on supplements the middle of May

(about

> a

> > > month ago). I immediately started with 2 EFA and 1 EPA and 400

> IU

> > > Vit E in the morning after breakfast. Then this past Sunday I

> added

> > > a second dose of 2 EFA and 1 EPA and 200 IU Vit E after

dinner.

> I

> > > also started probiotics Monday as well as 125 mg Magnesium.

I'm

> > > trying to get him off the Miralax since everyone seems to

think

> it

> > is

> > > so bad. He has been on it a year for bowel issues due to

> > > Hirschsprung's Disease. Today I bought some pear and papaya

> nectars

> > > and I'm trying that. If it doesn't work I will have to go back

> to

> > the

> > > Miralax I'm afraid.

> > >

> > > So my question is...am I going too fast with these supplements

> > (fish

> > > oil and vit E in particular)? Should I back track a little and

> > > reduce the dosing? I have recently seen posts that suggest

> waiting

> > 6

> > > months and just adding one capsule at a time, so now I'm

> confused.

> > I

> > > sure don't want to hurt him by adding these things too fast.

> Since

> > I

> > > added the second dose after dinner, he hasn't been able to

fall

> > > asleep until very late. I'm hoping that will resolve itself

when

> > his

> > > system adjusts, but if I should reduce the supplements and go

> > slower

> > > then I will do that. Please advise!!!

> > >

> > > Thanks so much!

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Boardwalk for $500? In 2007? Ha!

> > > Play Monopoly Here and Now (it's updated for today's economy)

at

> > Games.

> > >

> > >

[Guest guest]

Hi everyone, I just wanted to thank you all for your suggestions and

input. The pear nectar hasn't worked, but we are going to try Fruit-

Eze http://www.fruit-eze.com/index.html to see if maybe it will work.

Started giving him the Magnesuim and probiotics, so hopefully that

helps too. One thing to keep in mind is that my son is not like your

kids in that he was born with Hirschsprung's Disease and has had 9 or

so inches of his colon (along with his rectum) removed. He had a

colostomy the first nine months of his life and then had a pull-

through procedure done to remove the bad portion of his colon. This

is why he is having problems and it is common with Hirschsprung's

kids.

So, so far he has been much more emotional this week (many meltdowns)

since I upped the fish oil and Vit E. Do you think I'm going too fast

with the supplements?

Thanks again for all your help and advice!

Hi and other

> > > Apraxia Mommies and Daddies! I started my son,

> > > > who will be 4 July 27th, on supplements the middle of May

> (about

> > a

> > > > month ago). I immediately started with 2 EFA and 1 EPA and

400

> > IU

> > > > Vit E in the morning after breakfast. Then this past Sunday I

> > added

> > > > a second dose of 2 EFA and 1 EPA and 200 IU Vit E after

> dinner.

> > I

> > > > also started probiotics Monday as well as 125 mg Magnesium.

> I'm

> > > > trying to get him off the Miralax since everyone seems to

> think

> > it

> > > is

> > > > so bad. He has been on it a year for bowel issues due to

> > > > Hirschsprung's Disease. Today I bought some pear and papaya

> > nectars

> > > > and I'm trying that. If it doesn't work I will have to go

back

> > to

> > > the

> > > > Miralax I'm afraid.

> > > >

> > > > So my question is...am I going too fast with these

supplements

> > > (fish

> > > > oil and vit E in particular)? Should I back track a little

and

> > > > reduce the dosing? I have recently seen posts that suggest

> > waiting

> > > 6

> > > > months and just adding one capsule at a time, so now I'm

> > confused.

> > > I

> > > > sure don't want to hurt him by adding these things too fast.

> > Since

> > > I

> > > > added the second dose after dinner, he hasn't been able to

> fall

> > > > asleep until very late. I'm hoping that will resolve itself

> when

> > > his

> > > > system adjusts, but if I should reduce the supplements and go

> > > slower

> > > > then I will do that. Please advise!!!

> > > >

> > > > Thanks so much!

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Boardwalk for $500? In 2007? Ha!

> > > > Play Monopoly Here and Now (it's updated for today's economy)

> at

> > > Games.

> > > >

> > > >

[Guest guest]

I totally forgot to mention that we did that too! We're still GFCF -

- but I think the casein is what he really needs to avoid. Going

GFCF didn't help with the constipation right away -- but it did seem

to help the gut heal. I credit cod liver oil, all organic foods,

and magnesium as the other big factors for healing the gut.

Hi and other

> > > Apraxia Mommies and Daddies! I started my son,

> > > > who will be 4 July 27th, on supplements the middle of May

> (about

> > a

> > > > month ago). I immediately started with 2 EFA and 1 EPA and

400

> > IU

> > > > Vit E in the morning after breakfast. Then this past Sunday

I

> > added

> > > > a second dose of 2 EFA and 1 EPA and 200 IU Vit E after

> dinner.

> > I

> > > > also started probiotics Monday as well as 125 mg Magnesium.

> I'm

> > > > trying to get him off the Miralax since everyone seems to

> think

> > it

> > > is

> > > > so bad. He has been on it a year for bowel issues due to

> > > > Hirschsprung's Disease. Today I bought some pear and papaya

> > nectars

> > > > and I'm trying that. If it doesn't work I will have to go

back

> > to

> > > the

> > > > Miralax I'm afraid.

> > > >

> > > > So my question is...am I going too fast with these

supplements

> > > (fish

> > > > oil and vit E in particular)? Should I back track a little

and

> > > > reduce the dosing? I have recently seen posts that suggest

> > waiting

> > > 6

> > > > months and just adding one capsule at a time, so now I'm

> > confused.

> > > I

> > > > sure don't want to hurt him by adding these things too fast.

> > Since

> > > I

> > > > added the second dose after dinner, he hasn't been able to

> fall

> > > > asleep until very late. I'm hoping that will resolve itself

> when

> > > his

> > > > system adjusts, but if I should reduce the supplements and

go

> > > slower

> > > > then I will do that. Please advise!!!

> > > >

> > > > Thanks so much!

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Boardwalk for $500? In 2007? Ha!

> > > > Play Monopoly Here and Now (it's updated for today's

economy)

> at

> > > Games.

> > > >

> > > >

[Guest guest]

Pls join the Vitamin K group -- I learned a ton there. It really

more of a fat soluble vitamin protocol. I think you'll find the

info you need about why all the weepiness.

>

> Hi everyone, I just wanted to thank you all for your suggestions

and

> input. The pear nectar hasn't worked, but we are going to try Fruit-

> Eze http://www.fruit-eze.com/index.html to see if maybe it will

work.

> Started giving him the Magnesuim and probiotics, so hopefully that

> helps too. One thing to keep in mind is that my son is not like

your

> kids in that he was born with Hirschsprung's Disease and has had 9

or

> so inches of his colon (along with his rectum) removed. He had a

> colostomy the first nine months of his life and then had a pull-

> through procedure done to remove the bad portion of his colon. This

> is why he is having problems and it is common with Hirschsprung's

> kids.

>

> So, so far he has been much more emotional this week (many

meltdowns)

> since I upped the fish oil and Vit E. Do you think I'm going too

fast

> with the supplements?

>

> Thanks again for all your help and advice!

>