Re: Vitamin E levels too high

[Guest guest]

> > >

> > > >Have you also been doing supplements/therapy for gut healing?

> > > >Perhaps as the gut heals, he's absorbing more E than he was

> before

> > > >and now no longer needs the high dose.

>

[Guest guest]

I thought that too, especially with her fluoride knowledge, but am

disturbed that she'd rule out the malabsorption so quickly without the

tests.

Janice wrote:

>Becky,

>

>After watching many of the Danwebcast lectures, I think that I would die and go

to heaven peacefully if I could have my son seen by Dr. Usman!

>

>You and your child are soooooo lucky! Keep us all up to date with regard to

your daughters progress. To note about the regressions, for us they come and go

as well. Usually it is something that my child has eaten so think back to what

she had these last few days and try to pinpoint a dietary item that may have

contributed not just the supplements.

>

>Good luck and keep on plugging. I hope that you will 'share' all of the ups

and downs of your experience.

>

>Janice

>

>

> [sPAM] [ ] Re: Vitamin E levels too high

>

>

> , Liz, -

>

> Thanks so much for your responses. I don't know why Dr. Usman

> doesn't think my daughter is malabsorbing. She didn't think we

> needed a stool test and frankly, I was not excited about having to

> do it, so we dropped the issue. After reading everyone's responses

> and seeing my daughter's regression after only 5 days off of Vitamin

> E, we are back on it again. She also told us that her Vitamin K

> levels were high. I have been giving her Vitamin K every other day

> for the past 6 months.

>

> This is such a horrible time for a regresssion, as today is her

> first day of Kindergarten. Her speech and handwriting are noticably

> worse than a week ago. I hope they improve quickly.

>

> Thanks again,

> Becky

>

>

> > >

> > > >Have you also been doing supplements/therapy for gut healing?

> > > >Perhaps as the gut heals, he's absorbing more E than he was

> before

> > > >and now no longer needs the high dose.

>

>

>

>

>

>

[Guest guest]

Look, I think this is metal, in my son, and in my child. If it is metal

in Mark and you have gotten all these gains and seen so much with diet I

wonder if time won't heal it now that you may have hit the right target.

I offer you as a message of hope that I am 40 years old, wemt off milk

with my son, and no longer an pidgeon toed, no longer have back pain

that plagued me for years but I refused to get surgery for, no longer

have IBS...and I did have a paraite, for two years that even after

treatment was never the same. There is hope.

With that said, I also had steroids with two deliveries and my bowels

improved then too so it may not all be milk. Steroids are not my first

choice, particularly for my 2.5 year old, but it may be a consideration

if this continues despite no milk. Also, have you ever gotten tested for

celiac. I see there is a genetic test through direct labs. I may pursue

that if they skip DQ1 this Friday.

Janice wrote:

>Liz,

>

>It has always been there, lurking in the background. When he was little, Mark

would have bouts of really gross diapers. I would change his diet and it would

go away. As a matter of fact, Mark's first experience with the toilet was when

he was a little tyke of about a year and three-quarters. I was putting him into

the bathtub when an enormous bout of diarrhea hit. I immediately plopped my

naked baby on to the toilet and held him while he squeezed it all out. He was

very, very little back then and we did not know about his dyspraxia. When Mark

was older and doing a stint with the 'specialists' at the rehab hospital, they

told me that kids with neuro disorders had immature digestive systems and that

he would grow out of it. (knuckleheads!) After that, I just sort of ignored

it, trusting blindly the professionals and waiting for him to grow out of it.

How could I have been so dumb as to trust those people?

>

>Years later, we went to Mexico and he caught a parasite. Mark was about 6 at

that time and was treated for the parasite but.... he was never really normal

with regard to BM's after that. He would have chronic stints of diarrhea and

constipation. Each time I asked the pediatrician for advice, he would offer me

Ritalin! I think that's the only response I have ever had from our pediatrician

since Mark's dyspraxia diagnosis.... Ritalin!

>

>It was only when we went off the milk and it saw the affects that I needed to

learn more about this issue. Then I joined this board and it became apparent

that this issue was not isolated to Mark but was part of the disorder itself. I

am soooo angry and frustrated that it has taken me so long to equate the two

issues.

>

>Mark is soooo much better with regard to dyspraxia but this gut issue is again

'quietly lurking' inside of him. I know it. Previously, he would have diarrhea

and not say anything to me; the constipation would come in raging bouts every

six months or so and really began acting up in 2005. It would hurt so badly

that I would hold him and press his abdomen through the night with him moaning

and groaning in pain. Then I brought him to NACD and they got me off the milk

and it went away for the most part. It still acts up but never in the same way

and only when we've gone off the diet. So.... I KNOW that it is food related.

>

>I feel sick inside that I let this happen to my child for so many years. I was

on 'ignore' and didn't realize how terrible it was for him. The better his

dyspraxia gets, the more I realize how the gut 'takes him down' on the bad days.

He loses many of his abilities to illness, plain and simple. We have

strengthened the weak neuroconnections with therapy and most of the systems are

working now, but when the gut is acting up, everything goes down the 'toilet' so

to speak!

>

>Janice

>

>

> [sPAM] Re: [ ] Re: Vitamin E levels too high

>

>

> Janice, is this sickness new or has it always been? Is it just all the

> bad stuff coming out since the most recent dietary change?

>

> Liz wrote:

>

>

>

>

>

[Guest guest]

I can't imagine your frustration. Thanks for all the help.

claudia.morris wrote:

>

>>>>

>>>>

>>>>

>>>>>Have you also been doing supplements/therapy for gut healing?

>>>>>Perhaps as the gut heals, he's absorbing more E than he was

>>>>>

>>>>>

>>before

>>

>>

>>>>>and now no longer needs the high dose.

>>>>>

>>>>>

>

>

>

>

>

[Guest guest]

Liz,

It has always been there, lurking in the background. When he was little, Mark

would have bouts of really gross diapers. I would change his diet and it would

go away. As a matter of fact, Mark's first experience with the toilet was when

he was a little tyke of about a year and three-quarters. I was putting him into

the bathtub when an enormous bout of diarrhea hit. I immediately plopped my

naked baby on to the toilet and held him while he squeezed it all out. He was

very, very little back then and we did not know about his dyspraxia. When Mark

was older and doing a stint with the 'specialists' at the rehab hospital, they

told me that kids with neuro disorders had immature digestive systems and that

he would grow out of it. (knuckleheads!) After that, I just sort of ignored

it, trusting blindly the professionals and waiting for him to grow out of it.

How could I have been so dumb as to trust those people?

Years later, we went to Mexico and he caught a parasite. Mark was about 6 at

that time and was treated for the parasite but.... he was never really normal

with regard to BM's after that. He would have chronic stints of diarrhea and

constipation. Each time I asked the pediatrician for advice, he would offer me

Ritalin! I think that's the only response I have ever had from our pediatrician

since Mark's dyspraxia diagnosis.... Ritalin!

It was only when we went off the milk and it saw the affects that I needed to

learn more about this issue. Then I joined this board and it became apparent

that this issue was not isolated to Mark but was part of the disorder itself. I

am soooo angry and frustrated that it has taken me so long to equate the two

issues.

Mark is soooo much better with regard to dyspraxia but this gut issue is again

'quietly lurking' inside of him. I know it. Previously, he would have diarrhea

and not say anything to me; the constipation would come in raging bouts every

six months or so and really began acting up in 2005. It would hurt so badly

that I would hold him and press his abdomen through the night with him moaning

and groaning in pain. Then I brought him to NACD and they got me off the milk

and it went away for the most part. It still acts up but never in the same way

and only when we've gone off the diet. So.... I KNOW that it is food related.

I feel sick inside that I let this happen to my child for so many years. I was

on 'ignore' and didn't realize how terrible it was for him. The better his

dyspraxia gets, the more I realize how the gut 'takes him down' on the bad days.

He loses many of his abilities to illness, plain and simple. We have

strengthened the weak neuroconnections with therapy and most of the systems are

working now, but when the gut is acting up, everything goes down the 'toilet' so

to speak!

Janice

[sPAM] Re: [ ] Re: Vitamin E levels too high

Janice, is this sickness new or has it always been? Is it just all the

bad stuff coming out since the most recent dietary change?

Liz wrote:

[Guest guest]

Wow. I am never sure when I read your posts, but others too, if I

accidentally caught something early or there is more to come. It sounds

like I am lucky in a way that the GI wants to scope. I do not know

though as we don't have asthma and did not on the milk and he is

progressing. I need to consider it though.

We did have breathing issues though so it could have been missed. I am

starting to believe ours is either gluten sensitivity or celiac or

celiac-like but not EE. I am getting DQ2 and 8 tested as that is all

they would go for. I'll push for DQ1 in Oct with the second opinion doc

if needed.

There are no words. I will not post for a while what is happening in my

house. I have eluded to it in individual posts but seriously, what has

happened in my home has been nothing short of a transformation. My son

is not sick and he is age appropriate but may need more E. I'll try with

diet first and go from there. Everything has consistently gone in the

right direction, first off milk, then off water, then off gluten, then

off rice and soy. We saw gains on fish oil and calcium but the amount of

urine, the brown color of it, and the grey sludge that came out scared

me. Too much too fast. I am taking a break from all but food. When I did

that we had normal stool. When the sludge came out he was fine but it

still alarmed me.

I am thankful for all of your help. My children are so much better off

because of things you simply said to consider. I wish you and yours

healthy days ahead.

God Bless!

Liz

claudia.morris wrote:

>

>>>> >>>

>>>> >>>

>>>> >>>

>>>> >>>

>>>> >>>>Hi everyone,

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>We just got results from our DAN doctor, who told us to

>>>>

>>>>

>stop

>

>

>>>> >>>>

>>>> >>>>

>>>> >giving

>>>> >

>>>> >

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>our

>>>> >>>

>>>> >>>

>>>> >>>

>>>> >>>

>>>> >>>>daughter Vitamin E, because her levels were too high. We

>>>>

>>>>

>saw

>

>

>>>>

>>>>

>>>>

>>>>

>>>good

>>>

>>>

>>>

>>>

>>>> >>>>results from increased Vitamin E, so I don't want to take

>>>>

>>>>

>her

>

>

>>>>

>>>>

>>>>

>>>>

>>>off

>>>

>>>

>>>

>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>it.

>>>> >>>

>>>> >>>

>>>> >>>

>>>> >>>

>>>> >>>>What does it mean if her levels are too high? Could this be

>>>>

>>>>

>a

>

>

>>>> >>>>

>>>> >>>>

>>>> >sign

>>>> >

>>>> >

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>of

>>>> >>>

>>>> >>>

>>>> >>>

>>>> >>>

>>>> >>>>malabsorption? Our DAN doctor doesn't think that she has a

>>>> >>>>

>>>> >>>>

>>>> >problem

>>>> >

>>>> >

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>with

>>>> >>>

>>>> >>>

>>>> >>>

>>>> >>>

>>>> >>>>malabsorption. I'm confused. I'm thinking about just

>>>>

>>>>

>lowering

>

>

>>>>

>>>>

>>>>

>>>>

>>>the

>>>

>>>

>>>

>>>

>>>> >>>>dosage. Any suggestions?

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>Take care,

>>>> >>>>

>>>> >>>>Becky McFarland

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>

>>>> >>>>

[Guest guest]

What is NACD?

Janice <jscott@...> wrote: Really! That is unusual.

Give Pam at NACD a call and ask directly about them. Everything usually takes

about a week to arrive for me here in Canada. The one time it didn't, the item

was lost in the mail (I got it months later) and they immediately took action

and sent me another copy. NACD usually sends Fedex but sometimes uses the

regular mail.

Call them and find out why it didn't show. The gals there are really wonderful

but sometimes mistakes do happen.

Janice

[sPAM] Re: [ ] Re: Vitamin E levels too high

Don't get me started on NACD. I want to be on their team but the cds

never showed up and I ordered them forever ago and inquired and no response!

bscmommy wrote:

>Liz - I agree with you - there is a gut/brain connection. Remember

>the old addage " you are what you eat? " well, we are all proving

>that saying on this board. Just look at how our kids act/react when

>they are fed something they don't tolerate. Then add in

>preservatives, pesticides, growth hormones, antibiotics via food,

>ect, and we wonder why so many kids have so many labels now days?

>

>Hang in there Janice, you can heal your son's gut - look at

>everything else you've done!! Thanks to you, we have an appt. for

>our initial eval with NACD in September. I have high hopes.

>Stephanee

>

>

[Guest guest]

Hi Janice,

Dr. Usman is wonderful. We have only seen her once, as it's very

difficult to get an appointment with her. We started seeing a

Physician's Assistant at her office last November, but it took about

9 months to get an appointment with Dr. Usman herself. We definitely

feel lucky to be able to see her.

I will be sure to keep everyone informed of how things are going.

Today was 's first day of Kindergarten and it went great!

Thanks,

Becky

> > >

> > > >Have you also been doing supplements/therapy for gut

healing?

> > > >Perhaps as the gut heals, he's absorbing more E than he was

> before

> > > >and now no longer needs the high dose.

>

>

>

>

>

>

[Guest guest]

I will talk with Dr. Usman again about the malabsorption issue. We

talked about so much during the 90 minutes and I don't remember why

she didn't think it was an issue for . She really is a great

doctor and I don't want anyone to get the wrong impression from my

comments.

Becky

> > > >

> > > > >Have you also been doing supplements/therapy for gut

healing?

> > > > >Perhaps as the gut heals, he's absorbing more E than he

was

> > before

> > > > >and now no longer needs the high dose.

> >

> >

> >

> >

> >

> >

[Guest guest]

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>>Hi everyone,

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>We just got results from our DAN doctor, who told us to

> >>>>

> >>>>

> >stop

> >

> >

> >>>> >>>>

> >>>> >>>>

> >>>> >giving

> >>>> >

> >>>> >

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>our

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>>daughter Vitamin E, because her levels were too high. We

> >>>>

> >>>>

> >saw

> >

> >

> >>>>

> >>>>

> >>>>

> >>>>

> >>>good

> >>>

> >>>

> >>>

> >>>

> >>>> >>>>results from increased Vitamin E, so I don't want to take

> >>>>

> >>>>

> >her

> >

> >

> >>>>

> >>>>

> >>>>

> >>>>

> >>>off

> >>>

> >>>

> >>>

> >>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>it.

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>>What does it mean if her levels are too high? Could this

be

> >>>>

> >>>>

> >a

> >

> >

> >>>> >>>>

> >>>> >>>>

> >>>> >sign

> >>>> >

> >>>> >

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>of

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>>malabsorption? Our DAN doctor doesn't think that she has a

> >>>> >>>>

> >>>> >>>>

> >>>> >problem

> >>>> >

> >>>> >

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>with

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>>malabsorption. I'm confused. I'm thinking about just

> >>>>

> >>>>

> >lowering

> >

> >

> >>>>

> >>>>

> >>>>

> >>>>

> >>>the

> >>>

> >>>

> >>>

> >>>

> >>>> >>>>dosage. Any suggestions?

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>Take care,

> >>>> >>>>

> >>>> >>>>Becky McFarland

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

[Guest guest]

becksmcf <Becky.Mcfarland@...> wrote: Hi Janice,

Dr. Usman is wonderful. We have only seen her once, as it's very

difficult to get an appointment with her. We started seeing a

Physician's Assistant at her office last November, but it took about

9 months to get an appointment with Dr. Usman herself. We definitely

feel lucky to be able to see her.

I will be sure to keep everyone informed of how things are going.

Today was 's first day of Kindergarten and it went great!

Thanks,

Becky

> > >

> > > >Have you also been doing supplements/therapy for gut

healing?

> > > >Perhaps as the gut heals, he's absorbing more E than he was

> before

> > > >and now no longer needs the high dose.

>

>

>

>

>

>

[Guest guest]

becksmcf <Becky.Mcfarland@...> wrote: Hi Janice,

Dr. Usman is wonderful. We have only seen her once, as it's very

difficult to get an appointment with her. We started seeing a

Physician's Assistant at her office last November, but it took about

9 months to get an appointment with Dr. Usman herself. We definitely

feel lucky to be able to see her.

I will be sure to keep everyone informed of how things are going.

Today was 's first day of Kindergarten and it went great!

Thanks,

Becky

> > >

> > > >Have you also been doing supplements/therapy for gut

healing?

> > > >Perhaps as the gut heals, he's absorbing more E than he was

> before

> > > >and now no longer needs the high dose.

>

>

>

>

>

>

[Guest guest]

He had stridors from birth until age 15 months or so. He and my

daughter, when sleeping, often had to " catch their breath " for lack of a

better term. Hers ended after babyhood and his later. He always snored

and was generally a loud sleeper. She, less so. I brought this to the

ENT's attention a few times and he checked them over and said they just

snore. Off the baby water and milk this disappeared literally overnight

and has not returned. I had the same issues and the same result. To be

clear, I snored my whole life, got the same answer at the ENT (that ENT

was named best in NJ for years and the kids guy is his patner...as much

as I have had some lapses in faith I believe they did not miss anything

big and the breathing stuff was a sleep thing) but it got really bad and

I got really stuffy when actively drinking more of that " good water " and

more milk and consuming more wheat when trying to eat better, right

before I took an antibiotic that set off crazy GI symptoms. Many

variables at play but n the four years I upped milk consumption and

drank that water crazy near thyroid, near diabetes, near GERD, and near

asthma symptoms increased in me, including hair loss. My kids had lack

of hair coming in, spots on teeth (that made a peekaboo appearance)

benign cyanosis that I believe was not that, ezcema (only a little)

keratosis past babyhood, constipation, more for her than him, diarrhea,

hair loss and this breathing thing. It is all gone since loss of milk

and the water. I have a guess but I will never know for sure so here goes:

I think my kids had too much fluoride in them. I think there are other

environmental things that are at play that remain unidentified. The

benign cyanosis was likely low level lead poisoning as a detailed review

of the history reveals that these kids were on the fluoridated baby

water and had a lead painted toy chest in their room (one of few items

in there room...long story, lazy husband, rooms remain undone). That

toychest was in daughters room when she had the cyanosis last Spring.

It was moved into son's room when he got it last summer. It was then

moved downstairs in the Fall and no one got that stuff again. I took her

to ENT and cardilogist and all was well. I left him alone as his was

less severe (not much trouble waking him) and he had been previously

checked by cardiologfy so I figured I'd get the same answer. That was

probably something I'd do differently now.

I am starting to wonder the following:

In my kids this may be celiac. If so that is great but there is likely

more. I think the baby water (fluoridated, unregulated and recently

recalled), the lead in our house water, the lead in their rooms, has

something to do with all of this. From what I understand Dr. Usman has a

theory about dyspraxia, fluoride and lead but I personally know nothing

of it. I think my son may or may not have a milk allergy and daughter

has a milk thing too that was less severe. Not sure if it is a protein

thing or if the calcium was pushing out the bad stuff in son. Daughter

is constipated, and a different gender so who knows. Add to this, other

genetic stuff and the environmental stuff and that gives you my mildly

dyspraxic son and my daughter who was NT but began developing signs of

an auditory processing issue.

Since May we have gone GFCFSF, boycotted the pool for the summer, tried

to run around a lot, bought a whole house water filter and have been

eating only veggies, organic meat and permissible flours. Things have

consistently progressed in the right direction but I have concerns.

From a genetic standpoint, I have seen signs of this in varied forms in

my family and outright dyspraxia in my husband. The thing is, every

single person in the family with related or seemingly related issues

grew up in the same town (steel town with documented...sort of...

fluoridated water issues). It seemed to affect boys more than girls

(with the exception of one girl) and they " grew out of it " sort of

though if they were growing up now they'd get the same labels our kids

are getting: ADHD, Dyslexia, Dyspraxia (though only a few have the

speech component and only one is older with it remaining).

Here is my best explanation of the recent stuff as outlined to my

cousin, a dr. who has both supported me and doubted me along the way. I

am not a dr. just a mom who saw things going south in both kids and

tried to find answers. So far things are going well and I am thankful.

The fact that they are going so well so quickly is both exciting and

alarming. I just hope it continues and if metal or some other bad thing

in their bodies is the underlying cause then I hope I can get it out

with fish oil and occasional calcium supplements as you can see, doing

the calcium daily could cause harm. I also think what little deficits

are left have to do with E. I will consider that after a leveling out

period. Here is our current deal:

There is light reading on it but it is an issue. It is likely only

part. I am starting to believe celiac or something similar is part of

it. Chicken or egg I will never know but family history shows either way

genetics should help him beat this. I did only what was recommended on

GFCFSF (finally) and gave both kids a multivitamin and a calcium/mag

supplement. The result was sludge (grey sludge) pouring out of him and

brown pee (the same painful brown pee that resulted when I was drinking

lots of that water and getting UTI symptoms multiple times). It was

horrifying. At the same time, if metal is an issue then the fact that

it is coming out of him is great. The thing is, it was way too much too

fast and my fear would be overloading his system. I gave him calcium for

two days and the sludge is still coming out but it is brown now, likely

from the fish oil and he is just on regular GFCFSF food. Calcium pulls

out fluoride. It is part of chelators (which I assure you I was not

attempting to do). So now, what else happened: During all of this he was

the happiest he has been in his little life. Pleasant as pie, no gastric

distress. He is not talking as much but here is the thing: when he

speaks it is in context, he seeks you out to talk, the navy blue roof of

his mouth and (lifelong) tooth pain left, he is making consonant sounds

he could not do before consistently: C, K, M, N, his shiners are

leaving, and most notably, his stiff legs are loosening up. ,

on calcium, pooped more and peed more. I will give it to her but not

daily as I am trying to get a good amount in through diet. The wierd

things that happened to her since that time was that she talks more, so

much more, is more with it and responsive, detailed stories and in three

days her opaque teeth turned to white and shifted. That screamed celiac

to me.

I think fluoride hits girls in different ways. also had so

much less and ate some things that have an antioxidant effect. In the

end I will never know. I have to make peace with that. I do have to

monitor their bloodwork to be sure the dietary changes alone are not

harming them. Rudy will take care of that one as I am sure (and

rightfully so) the pediatrician thinks I am nuts. I am also pursuing a

GI in Philly for a 72 hour fecal monitoring test just to see if we beat

the whole fat malabsorption issue with the changes or to monitor it if

we didn't. That is in Oct. If there is any decline, I am going to the

neurodevelopmental pediatrician who wrote the book on dyspraxia, in Oct.

If he seems ok by then I will cancel and accept the positive. I am

getting hair, fecal and urine tests for metal through a direct lab to

see what is coming out. I will not go to the DAN!. There are few around

here. None are familiar with the fish oil and the guy who treats

fluorosis is treating two people I know and taking them for a ride. I

will not pursue chelation. The shear amount of stuff that comes out of

in ocean water, with fish oil, or on calcium (and not when he is

exposed to all 3 on the same day as it seems too dangerous to do that)

haunts me. Too fast. I can't imagine there is that much more and I do

not want to create problems he does not have.

I do think I have to pursue IGG testing eventually to see what will be

permissible to return to diet in the future. For now though, I think

there is enough of an agenda. We get genetic celiac testing tomorrow.

They only ordered DQ2 and 8. If negative I will ask for DQ1 at the

October appointment.

It is getting better. I have a handle on what is possible to handle. It

is a great way to head to vacation as I am tired of living this.

If you have any thoughts on this I would love to hear them. Not sure

what other options I have.

Thanks!

Liz

claudia.morris wrote:

>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>Hi everyone,

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>We just got results from our DAN doctor, who told us to

>>>>>>>>>>

>>>>>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>stop

>>>

>>>

>>>

>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>giving

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>our

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>daughter Vitamin E, because her levels were too high. We

>>>>>>>>>>

>>>>>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>saw

>>>

>>>

>>>

>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>good

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>>>>results from increased Vitamin E, so I don't want to take

>>>>>>>>>>

>>>>>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>her

>>>

>>>

>>>

>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>off

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>it.

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>What does it mean if her levels are too high? Could this

>>>>>>>>>>

>>>>>>>>>>

>be

>

>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>a

>>>

>>>

>>>

>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>sign

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>of

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>malabsorption? Our DAN doctor doesn't think that she has a

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>problem

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>with

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>malabsorption. I'm confused. I'm thinking about just

>>>>>>>>>>

>>>>>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>lowering

>>>

>>>

>>>

>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>the

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>>>>dosage. Any suggestions?

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>Take care,

>>>>>>>>>>

>>>>>>>>>>Becky McFarland

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

[Guest guest]

...Cole is on asthma meds through the nebulizer during cold and flu

season. He has never been diagnosed with it even though he has wheezed on

occasion and was once hospitalized overnight because he wasn't maintaining his

oxygen level. I thought I understood that the reason not to call it asthma was

that sometimes little kids go through that stage and outgrow it and for

insurance purposes they wait until about 5 to decide if they are really

asthmatic. Are we being fed a line? I ask because I didn't know how to fill

out his school form for the tree nut allergy because it asked if he had

asthma...in which case in the event of an allergic reaction, it might be more

serious. I don't know if he is or he isn't. Aggie

[ ] Re: Vitamin E levels too high

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>>Hi everyone,

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>We just got results from our DAN doctor, who told us to

> >>>>

> >>>>

> >stop

> >

> >

> >>>> >>>>

> >>>> >>>>

> >>>> >giving

> >>>> >

> >>>> >

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>our

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>>daughter Vitamin E, because her levels were too high. We

> >>>>

> >>>>

> >saw

> >

> >

> >>>>

> >>>>

> >>>>

> >>>>

> >>>good

> >>>

> >>>

> >>>

> >>>

> >>>> >>>>results from increased Vitamin E, so I don't want to take

> >>>>

> >>>>

> >her

> >

> >

> >>>>

> >>>>

> >>>>

> >>>>

> >>>off

> >>>

> >>>

> >>>

> >>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>it.

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>>What does it mean if her levels are too high? Could this

be

> >>>>

> >>>>

> >a

> >

> >

> >>>> >>>>

> >>>> >>>>

> >>>> >sign

> >>>> >

> >>>> >

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>of

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>>malabsorption? Our DAN doctor doesn't think that she has a

> >>>> >>>>

> >>>> >>>>

> >>>> >problem

> >>>> >

> >>>> >

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>with

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>

> >>>> >>>>malabsorption. I'm confused. I'm thinking about just

> >>>>

> >>>>

> >lowering

> >

> >

> >>>>

> >>>>

> >>>>

> >>>>

> >>>the

> >>>

> >>>

> >>>

> >>>

> >>>> >>>>dosage. Any suggestions?

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>Take care,

> >>>> >>>>

> >>>> >>>>Becky McFarland

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

> >>>> >>>>

[Guest guest]

I may have been too harsh. She sounds like a caring and open doctor. I

am sure you will get your answer. Best wishes!

becksmcf wrote:

>I will talk with Dr. Usman again about the malabsorption issue. We

>talked about so much during the 90 minutes and I don't remember why

>she didn't think it was an issue for . She really is a great

>doctor and I don't want anyone to get the wrong impression from my

>comments.

>

>Becky

>

>

>>> > >

>>> > > >Have you also been doing supplements/therapy for gut

>>>

>>>

>healing?

>

>

>>> > > >Perhaps as the gut heals, he's absorbing more E than he

>>>

>>>

>was

>

>

>>> before

>>> > > >and now no longer needs the high dose.

>>>

>>>

>>>

>>>

>>>

>>>

[Guest guest]

I don't think it has to be extensive because I think malabsorption is

only part of it. A wacked out immune system (yes, even if they are never

sick...can be worse as the bad stuff is not coming out and their

autoimmune system is on overdrive), genetics and environment probably

are the rest of the story but I am not sure we can ever know for sure.

Janice wrote:

>Becky,

>

>While I know that my son has gut issues, I don't believe that he has extensive

malabsorbtion issues. Why? Because he is growing and is about the same size as

his peers (even if a little skinny but not crazy skinny)!

>

>Is your daughter average height and weight for her age? If so, that could be a

reason why Dr. Usman is ruling out malabsorption. Of course, this does not mean

that she does not need 'more' of some things and less of others.... I was under

the impression that the kids with severe malabsorption issues looked like the

'starving children poster kids'.

>

>Just a thought...

>

>Janice

>

>

> [sPAM] [ ] Re: Vitamin E levels too high

>

>

> I will talk with Dr. Usman again about the malabsorption issue. We

> talked about so much during the 90 minutes and I don't remember why

> she didn't think it was an issue for . She really is a great

> doctor and I don't want anyone to get the wrong impression from my

> comments.

>

> Becky

>

>

> > > > >

> > > > > >Have you also been doing supplements/therapy for gut

> healing?

> > > > > >Perhaps as the gut heals, he's absorbing more E than he

> was

> > > before

> > > > > >and now no longer needs the high dose.

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

This growing out of it thing is exactly what I saw in my family. Mostly

males. 1 female and she grew out of it early, at age one but not before

a weeklong hospitalization with asthma and bronchitis. They end up

growing out of asthma and into GI stuff. None or almost none had

allergies except me...the one with no childhood asthma and severe

intestinal stuff as an adult that cleared up after this recent dietary

thing (though intestinal paraite meds, steroid with both deliveries, and

time put me on track before this I believe. I believe genes are in our

favor on this one for the most part considering all the asthmatics grew

up in houses with smokers who locked them in cars while puffing away, we

lived near the steel mill, and there is a theory that what actually set

off that asthma bronchitis near death thing in my baby sister was that

on top of all that the day she went in the hospital the exterminator

came to spray the monthly dioxin treatment. Ah...the 70's and 80's.

Gene and Aggie Birocco wrote:

>...Cole is on asthma meds through the nebulizer during cold and flu

season. He has never been diagnosed with it even though he has wheezed on

occasion and was once hospitalized overnight because he wasn't maintaining his

oxygen level. I thought I understood that the reason not to call it asthma was

that sometimes little kids go through that stage and outgrow it and for

insurance purposes they wait until about 5 to decide if they are really

asthmatic. Are we being fed a line? I ask because I didn't know how to fill

out his school form for the tree nut allergy because it asked if he had

asthma...in which case in the event of an allergic reaction, it might be more

serious. I don't know if he is or he isn't. Aggie

> [ ] Re: Vitamin E levels too high

>

>

>

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>>Hi everyone,

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>We just got results from our DAN doctor, who told us to

> > >>>>

> > >>>>

> > >stop

> > >

> > >

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >giving

> > >>>> >

> > >>>> >

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>our

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>>daughter Vitamin E, because her levels were too high. We

> > >>>>

> > >>>>

> > >saw

> > >

> > >

> > >>>>

> > >>>>

> > >>>>

> > >>>>

> > >>>good

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>> >>>>results from increased Vitamin E, so I don't want to take

> > >>>>

> > >>>>

> > >her

> > >

> > >

> > >>>>

> > >>>>

> > >>>>

> > >>>>

> > >>>off

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>it.

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>>What does it mean if her levels are too high? Could this

> be

> > >>>>

> > >>>>

> > >a

> > >

> > >

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >sign

> > >>>> >

> > >>>> >

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>of

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>>malabsorption? Our DAN doctor doesn't think that she has a

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >problem

> > >>>> >

> > >>>> >

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>with

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>

> > >>>> >>>>malabsorption. I'm confused. I'm thinking about just

> > >>>>

> > >>>>

> > >lowering

> > >

> > >

> > >>>>

> > >>>>

> > >>>>

> > >>>>

> > >>>the

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>> >>>>dosage. Any suggestions?

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>Take care,

> > >>>> >>>>

> > >>>> >>>>Becky McFarland

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

> > >>>> >>>>

[Guest guest]

Becky,

While I know that my son has gut issues, I don't believe that he has extensive

malabsorbtion issues. Why? Because he is growing and is about the same size as

his peers (even if a little skinny but not crazy skinny)!

Is your daughter average height and weight for her age? If so, that could be a

reason why Dr. Usman is ruling out malabsorption. Of course, this does not mean

that she does not need 'more' of some things and less of others.... I was under

the impression that the kids with severe malabsorption issues looked like the

'starving children poster kids'.

Just a thought...

Janice

[sPAM] [ ] Re: Vitamin E levels too high

I will talk with Dr. Usman again about the malabsorption issue. We

talked about so much during the 90 minutes and I don't remember why

she didn't think it was an issue for . She really is a great

doctor and I don't want anyone to get the wrong impression from my

comments.

Becky

> > > >

> > > > >Have you also been doing supplements/therapy for gut

healing?

> > > > >Perhaps as the gut heals, he's absorbing more E than he

was

> > before

> > > > >and now no longer needs the high dose.

> >

> >

> >

> >

> >

> >

[Guest guest]

National Association for Child Development http://www.nacd.org

A non-profit parent-based organization which designs home therapy programs for

all types of disorders based on neurodevelopmental root causes. I have been

taking my son there for the past year and he has done better in one year than in

9 years of system therapy! As a matter of fact; most of his severe dyspraxic

issues are almost gone and we are pretty much just dealing with ADD like issues.

You go for an evaluation every 3 months and they design a home therapy program

for you to do at home based on your childs current developmental stage. The

price is extremely reasonable and all therapy areas are addressed: OT, auditory

therapy, VT, SLP, Behavioural, social, academic... etc. Anything that needs to

happen is identified and addressed. It is tough because you become the

therapist but that is why it works.... because the therapy is happening daily at

home.

Home therapy is essential for our kids. If you have a therapist, daily homework

is an absolute must! (took me 10 years to learn this! duh...)

Here are some introductory videos for you to watch:

http://www.nacd.org/tour/video.html

http://www.nacd.org/tour/video2.html

http://www.nacd.org/tour/video3.html

[sPAM] Re: [ ] Re: Vitamin E levels too high

Don't get me started on NACD. I want to be on their team but the cds

never showed up and I ordered them forever ago and inquired and no response!

bscmommy wrote:

>Liz - I agree with you - there is a gut/brain connection. Remember

>the old addage " you are what you eat? " well, we are all proving

>that saying on this board. Just look at how our kids act/react when

>they are fed something they don't tolerate. Then add in

>preservatives, pesticides, growth hormones, antibiotics via food,

>ect, and we wonder why so many kids have so many labels now days?

>

>Hang in there Janice, you can heal your son's gut - look at

>everything else you've done!! Thanks to you, we have an appt. for

>our initial eval with NACD in September. I have high hopes.

>Stephanee

>

>

[Guest guest]

How is it determined that a child has gut issues, what are the symptoms?

Janice <jscott@...> wrote: Becky,

While I know that my son has gut issues, I don't believe that he has extensive

malabsorbtion issues. Why? Because he is growing and is about the same size as

his peers (even if a little skinny but not crazy skinny)!

Is your daughter average height and weight for her age? If so, that could be a

reason why Dr. Usman is ruling out malabsorption. Of course, this does not mean

that she does not need 'more' of some things and less of others.... I was under

the impression that the kids with severe malabsorption issues looked like the

'starving children poster kids'.

Just a thought...

Janice

[sPAM] [ ] Re: Vitamin E levels too high

I will talk with Dr. Usman again about the malabsorption issue. We

talked about so much during the 90 minutes and I don't remember why

she didn't think it was an issue for . She really is a great

doctor and I don't want anyone to get the wrong impression from my

comments.

Becky

> > > >

> > > > >Have you also been doing supplements/therapy for gut

healing?

> > > > >Perhaps as the gut heals, he's absorbing more E than he

was

> > before

> > > > >and now no longer needs the high dose.

> >

> >

> >

> >

> >

> >

[Guest guest]

My son has lab confirmed malabsorption and is in the 95% for both

height and weight. He's thin, but no thinner than some of the other

kids in his class. He is taller than most of the kids. Looks can be

deceiving.

> > > > >

> > > > > >Have you also been doing supplements/therapy for gut

> healing?

> > > > > >Perhaps as the gut heals, he's absorbing more E than he

> was

> > > before

> > > > > >and now no longer needs the high dose.

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

You have to go to a GI. It is tricky. Both my kids pooped daily and the

disrrhea and the constipation were not always present or obvious. Since

kids eat different on different days it is tough to see. The

malabsorption folder may be helpful to you.

Luce wrote:

>How is it determined that a child has gut issues, what are the symptoms?

>

>Janice <jscott@...> wrote: Becky,

>

>While I know that my son has gut issues, I don't believe that he has extensive

malabsorbtion issues. Why? Because he is growing and is about the same size as

his peers (even if a little skinny but not crazy skinny)!

>

>Is your daughter average height and weight for her age? If so, that could be a

reason why Dr. Usman is ruling out malabsorption. Of course, this does not mean

that she does not need 'more' of some things and less of others.... I was under

the impression that the kids with severe malabsorption issues looked like the

'starving children poster kids'.

>

>Just a thought...

>

>Janice

>

> [sPAM] [ ] Re: Vitamin E levels too high

>

>I will talk with Dr. Usman again about the malabsorption issue. We

>talked about so much during the 90 minutes and I don't remember why

>she didn't think it was an issue for . She really is a great

>doctor and I don't want anyone to get the wrong impression from my

>comments.

>

>Becky

>

>

>>>>>

>>>>>

>>>>>

>>>>>>Have you also been doing supplements/therapy for gut

>>>>>>

>>>>>>

>healing?

>

>

>>>>>>Perhaps as the gut heals, he's absorbing more E than he

>>>>>>

>>>>>>

>was

>

>

>>>before

>>>

>>>

>>>>>>and now no longer needs the high dose.

>>>>>>

>>>>>>

>>>

>>>

>>>

>>>

[Guest guest]

That is precisely why I am testing. Both kids 95/95 and then dropped off

in weight, put it back on and dropped off in weight, then height. Sad

thing is (not really sad) it will likely be normal since they are

growing like weeds with new changes. Who knows? That is why it has to be

monitored regularly. No other way at this point.

wrote:

>My son has lab confirmed malabsorption and is in the 95% for both

>height and weight. He's thin, but no thinner than some of the other

>kids in his class. He is taller than most of the kids. Looks can be

>deceiving.

>

>

>> > > > >

>> > > > > >Have you also been doing supplements/therapy for gut

>> healing?

>> > > > > >Perhaps as the gut heals, he's absorbing more E than he

>> was

>> > > before

>> > > > > >and now no longer needs the high dose.

>> > >

>> > >

>> > >

>> > >

>> > >

>> > >

[Guest guest]

Hi Janice,

That's interesting to know. My daughter is of average weight and

height - almost always between 50% and 60% on the charts, so that

may be the reason. We're going to have a follow-up call soon, so I

will pursue more with Dr. Usman.

Becky

> > > > >

> > > > > >Have you also been doing supplements/therapy for gut

> healing?

> > > > > >Perhaps as the gut heals, he's absorbing more E than he

> was

> > > before

> > > > > >and now no longer needs the high dose.

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Janice...

Do you do private speech and ot in addition to nacd? The fees are very

reasonable by comparison to what we are paying in co-pays now. Do they take

insurance? I guess not if it is non profit. Aggie

[sPAM] Re: [ ] Re: Vitamin E levels too high

Don't get me started on NACD. I want to be on their team but the cds

never showed up and I ordered them forever ago and inquired and no response!

bscmommy wrote:

>Liz - I agree with you - there is a gut/brain connection. Remember

>the old addage " you are what you eat? " well, we are all proving

>that saying on this board. Just look at how our kids act/react when

>they are fed something they don't tolerate. Then add in

>preservatives, pesticides, growth hormones, antibiotics via food,

>ect, and we wonder why so many kids have so many labels now days?

>

>Hang in there Janice, you can heal your son's gut - look at

>everything else you've done!! Thanks to you, we have an appt. for

>our initial eval with NACD in September. I have high hopes.

>Stephanee

>

>