Re: dietary question

[Guest guest]

I think with regards to changing the diet, slow and steady is the way to go.

Last year at this time my boy was a granola bar junky and not eating poorly but

certainly not eating well. I would often pop into 's or the nearest burger

joint on the way to activities for convenience; we ate a lot of pizza, pop and

take out food.

Today, our lifestyle and diet is vastly different. I look back and cannot

believe how much we have changed in our food preferences and diet. So, even

with a 12 year old, it can be done!

We replaced pop with soda water and lemon juice or any type of juice that you

like. We stopped buying anything out of a box or prepackaged and started buying

everything fresh. No artificial colors, no artificial flavours is a great first

step and pretty easy to implement. At first you need to do a ton of label

reading and then after a while, you know which products are for you.

The elimination of casien is actually pretty easy and the only one in our house

who has done this is Mark though the rest of us tend to consume a lot less

cheese then we did in the past. For Mark, the changes coming from the

elimination of casien were dramatic and we could really see that he had to let

the milk products disappear from his life (at least for now). Casien takes out

his hearing, makes his speech slurred and slushy sounding and he completely

regresses in his coordination and his mannerisms. It also causes him extreme

diarrhea. It is unbelievable to me that I did not realize this for 12 years of

my kids life but I didn't. For some reason after the casien is gone for a while

(about 3 weeks), whenever he had it, he got ill with diarrhea.

Gluten is tough. It is a very difficult diet and we are mostly gluten free but

we still consume it with dietary enzymes. There are some extremely good

products out there that are terrific for the digestion of gluten. Look at the

enzymes made by Huston Nutraceuticals for they enable us to go semi-gluten free.

At least this is an option for anyone slowly cutting out gluten from there life

and has worked for us.

Mostly, I notice a cumulative affect if Mark begins to 'cheat' with junk food on

a regular basis. Halloweeen for instance was a disaster to his system and he

spent a couple of weeks mildly 'out of it'. When we 'cheat', which we do

because we are not perfect and are always trying, I always do the epsom salts

baths and they work like a charm for my son. Epsom salts are cheap and well

worth the effort to use if you are having a lot of dietary infractions. At

least, this has been my experience.

We like to call this a marathon and not a sprint. Cut yourself some slack and

forgive yourself when you cannot make immediate changes. Immediate changes are

tough on the system as well. We went cold turkey with the sugar elimination, no

artificial colours, no artificial flavours and Mark was pretty 'low energy',

crabby and basicly nasty to hang with for the first week or two. Then, he just

got really hungry and I was emptying the cupboards trying to keep him full. He

finally stabilized and life went back to normal with better eating habits. I

have to say that he has grown tremendously in the last 5 months since we started

this really intensive 'healthy food' kick. Since June, he has probably grown

about 5 inches! He is now beginning to pass me in height which has to be a good

sign.

I do not regret changing our lifestyle. The results of Mark's testing done in

the beginning of September show that even though we have changed our lifestyle,

his body remains high in trans fats. YUCK! It can take up to a year to get

this garbage out of our kids systems; we need to do this for the long haul and

really work for our kids overall health. It's tough but if I can do it (lousy

cook, stomach of steel that I am), I believe that anyone can do it! Slow and

steady definately wins this race.....

Take care and chin up,

Janice

Mother of Mark, 12

[sPAM] [ ] Re: Dietary question

I can't stop myself. Did you get genetic testing? There are several

gluten snensitivity genes. Then there is the whole celiac thing. Why

try a diet until you know you need it when there is testing to help

guide you. This may be the new idea that you were looking

for...genetic testing.

> >

> > I didn't say in any way anyone was wrong. It just seemed like

> you were

> > implying that because a child eats pizza or bagels that the

parent

> is not

> > feeding them nutritional foods. I never said you opinion was

> obnoxious, I just

> > said it was your opinion. It is very hard to go through these

> issues, I just

> > wanted feed back on the question, not an implication that I was

> feeding my

> > children foods that were not nutritious. No two kids are the

same

> and no one

> > has all the answers, it just seemed a tad harsh. This may have

> been studied

> > but not proven 100% or people who treat these children would

make

> it a

> > recommendation. Some children may respond, others may not. I

> just found it hard

> > with a picky eater to think of new ideas and wanted a few

others,

> sorry if you

> > felt I didn't like the idea, I wouldn't have tried the diet in

the

> first place

> > if I didn't.

> >

> >

> >

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

> 2007's hottest

> > products.

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

> NCID=aoltop00030000000001)

> >

> >

> >

[Guest guest]

I am terribly sorry. I was a jerk. I do have a bigger email to send

you that may be helpful. I just need a day off the board. This thing

that is hurting our kids is haunting me and I lashed out at you and

that was wrong. I need a break from the board. When I return I will

email something that I hope will be helpful.

Sincerely,

Liz

>

> First of all I never asked for a Dan Dr or an address. I never

asked for

> anyone to hold my hand, this is supposed to be a place where

people can

> express their feelings and concerns. Don't respond to people if

you think that they

> are asking too much from you. If you gave the fish oil links etc,

just

> leave it at that. Why respond any further. I think the next

statement made is

> even better, that I am looking for a magic cure, I love my son the

way he is,

> I am just trying to help him, wouldn't it be nice if there were

magic cures.

> My son is great and doesn't need a cure. I don't believe a

special diet

> would cure him from a thing, I just thought it might help him with

his speech.

> I just want to help him in any way I can. Just take into

consideration a

> mother's pain for a moment, this is a scary thing and saying that

I want

> someone to hold my hand is just a top notch answer. I too know

many specialists

> with many years experience in this field who have said it may work

for some but

> it is not the answer, the cure. Children grow and change and

their bodies do

> amazing things on their own without gluten free all the time.

There is no

> proof that this type of diet is the reason for any improvements.

I wanted to

> try it because I did hear positives from many people. More

research needs to

> be done on these type diets. I am done asking question

regarding special

> diets. I didn't say anyone was un thoughtful, I thought the way

the

> question was answered was not thoughtful. This is the last thing I

am saying on the

> subject. Thanks, and if I offended you, sorry.

>

>

>

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

2007's hottest

> products.

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

NCID=aoltop00030000000001)

>

>

>

[Guest guest]

You are right Liz, it was I who wrote the response which seemed harsh

and thoughtless to someone. That certainly was not my intent.

As a physician for nearly 25 years I do not always have popular

solutions. Most of them involve 3 things: Breakfast, Lunch, and

Dinner.

As a parent of five, (the youngest adopted, autistic and non-verbal),

I have developed a " tough love " stance based on experience at work

and home as well as a lifetime of research.

The science is there. 'The China Study' is a good read concerning

diet which factor into some DAN! strategies. The truth is average

Americans are not well. Much of that is environmental, more of it is

nutritional. At least that is one factor over which we have

control.

It does take a LOT of work, discipline, guidance. I think as parents

it is part of our responsibility to make those choices for our

young. I have always told my kids, " you dont have to like it, you

just have to eat it. " It is hard, believe me I know. I think it is

harder to watch them grow ill from the all-American typical diet. I

have never seen or read that pizza, bagel, fries and the like have

ever been shown to enhance any biologic system.

Just my opinion, indeed---please trust that I share this only because

I care, and I have been there.

I wish you well.

Dr. M.

, " ilizzy03 " <lizlaw@...> wrote:

>

> I was not implying anything because I did not write the post. In

> fact, a member who identified herself as a medical doctor did. She,

I

> do not believe, was implying anything. She was stating the science

> which says the particular proteins in question are not necessarily

> good for anyone. She was not commenting on parenting. She was

telling

> her story in her home. No one cares what you feed your kids. That

is

> your business. Bear in mind if you ask a question about a

restrictive

> diet people are going to mention the restrictions and why they may

be

> applicable and not just to our kids.

>

> I, not you, said my opinion was obnoxious because I was mad at

myself

> for not holding back. Here is why: You asked for a DAN Dr. I gave

you

> a name and you wanted an address. The doctor I gave you takes one

> click of google to find. You asked about fish oil and links were

> provided but you want someone to hold your hand and give you the

> magic cure and doseage for your child. Nobody knows that. If we did

> this board and others like it would not exist. You asked about a

diet

> that you did not see progress with. Someone explained, very

> thoughtfully, the diet, how it worked in their home and you got

> defensive about what you feed your child and called them

thoughtless.

> Honestly, pizza and bagels may very well be good for your kid. You

> never know. One woman on this board, a nurse, looked into special

> allergy testing that allowed her kid to eat stuff she thought was

> nuts like easy mac and cheese and guess what, he started growing.

>

> I do not know what to say. I am uncomfortable posting this because

> you are a fellow mom in this thing that sucks and is hurting our

> kids. I guess I just got fired up because in your defensiveness you

> called someone, who seems to me to be very thoughtful, thoughtless.

> It really is none of my business.

>

> Happy Thanksgiving and I hope you do find your answer. Your child

> deserves his voice.

>

>

> >

> > I didn't say in any way anyone was wrong. It just seemed like

> you were

> > implying that because a child eats pizza or bagels that the

parent

> is not

> > feeding them nutritional foods. I never said you opinion was

> obnoxious, I just

> > said it was your opinion. It is very hard to go through these

> issues, I just

> > wanted feed back on the question, not an implication that I was

> feeding my

> > children foods that were not nutritious. No two kids are the

same

> and no one

> > has all the answers, it just seemed a tad harsh. This may have

> been studied

> > but not proven 100% or people who treat these children would

make

> it a

> > recommendation. Some children may respond, others may not. I

> just found it hard

> > with a picky eater to think of new ideas and wanted a few

others,

> sorry if you

> > felt I didn't like the idea, I wouldn't have tried the diet in

the

> first place

> > if I didn't.

> >

> >

> >

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

> 2007's hottest

> > products.

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

> NCID=aoltop00030000000001)

> >

> >

> >

[Guest guest]

Children don't grow ill from pizza get real, sometimes people take things

too far by saying things that do offend others. Making kids grow up eating

food they don't like is crazy. When you have a child on the autism spectrum

along with apraxia, making them eat would be cruelty. Kids grow up to have

eating disorders if all their choices are taken away. Theses children have

sensory issues and reasons for not wanting to eat certain things. Forcing them

to

eat would mean them gagging or starving, unless you have been in another

parents shoes you dont know what they struggle with. If I could get my child

to

be on a gluten free diet I would, I would give it a try. But knowing my child

has these sensory issues it is hard for me. This whole subject now has been

talked to death. I got another e mail privately from someone in the group

who agreed with me and she was very kind. ASD is another story. I am sure

you are not un thoughtful, sorry if you were offended.

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

products.

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

[Guest guest]

sounds good.

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

products.

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

[Guest guest]

No Problem, you were helpful. Sometimes I think we just get so passionate

about something and we say things that come out in ways others don't always

understand. I am not a confrontational person and I don't like to make others

uncomfortable either. Truce???

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

products.

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

[Guest guest]

*Some* children with sensory issues have them because they are

malabsorbing proteins, specifically gluten and casein, both present

in pizza. My son lost a lot of his issues because these were an issue

for him. Allergies to other things in these foods, aluminum, for

instance, is in a lot of packaged food that has gluten in it but

other nongluten foods too. That was an issue for my daughter. The

chking thing drastically left my son with milk removal. Admittedly it

was not a cure-all. I am still looking for the rest of the puzzle

pieces on that one.

Every child is different. Some improve from diet and not always

GFCF...there are others.

Whatever path you choose I wish you well. There is no one answer,

only questions.

I am sorry if I made your time so far on the board uncomfortable.

Many have helped me and I was not helpful to you. I am sorry.

>

> Children don't grow ill from pizza get real, sometimes people take

things

> too far by saying things that do offend others. Making kids grow

up eating

> food they don't like is crazy. When you have a child on the

autism spectrum

> along with apraxia, making them eat would be cruelty. Kids grow up

to have

> eating disorders if all their choices are taken away. Theses

children have

> sensory issues and reasons for not wanting to eat certain things.

Forcing them to

> eat would mean them gagging or starving, unless you have been in

another

> parents shoes you dont know what they struggle with. If I could

get my child to

> be on a gluten free diet I would, I would give it a try. But

knowing my child

> has these sensory issues it is hard for me. This whole subject

now has been

> talked to death. I got another e mail privately from someone in

the group

> who agreed with me and she was very kind. ASD is another story.

I am sure

> you are not un thoughtful, sorry if you were offended.

>

>

>

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

2007's hottest

> products.

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

NCID=aoltop00030000000001)

>

>

>

[Guest guest]

Deal.

>

> No Problem, you were helpful. Sometimes I think we just get so

passionate

> about something and we say things that come out in ways others

don't always

> understand. I am not a confrontational person and I don't like to

make others

> uncomfortable either. Truce???

>

>

>

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

2007's hottest

> products.

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

NCID=aoltop00030000000001)

>

>

>

[Guest guest]

One thing I offer you is this: You have mentioned if these things

were the panacea the specialsts would know. I have to tell you in my

experience that is not true, panacea notwithstanding. My children

have a known autoimmune disorder and a diet to go with it and no one

medically was familiar with this. I live in NJ and have access to

some of the premier docs in the country in NY, NJ, and Phila so that

should not have been. In fact, my daughter technically has celiac,

which hair loss is an indication of and no one knew it but the celiac

expert...not good since no one knew to send me to her. When I went to

a prominent Neurodevelopmental Pediatrician in NY she knew nothing of

the GFCF diet. Since my kids were on it I knew it was time to leave.

I am not dissing all docs and certainly not neurodevelopmental

pediatricians as I firmly believe the right one can be a lifesaver in

this thing that hurts our kids. I just want you to kknow that part of

our story.

Best wishes!

L

> >

> > No Problem, you were helpful. Sometimes I think we just get so

> passionate

> > about something and we say things that come out in ways others

> don't always

> > understand. I am not a confrontational person and I don't like

to

> make others

> > uncomfortable either. Truce???

> >

> >

> >

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

> 2007's hottest

> > products.

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

> NCID=aoltop00030000000001)

> >

> >

> >

[Guest guest]

,

First and foremost, CMT is a genetically inherited neuromuscular disease, it is

not immune system related per se.While there have been 'incidental reports of

some cases', one's immune system is all together independent.

Dr. Greg at U of Washington in Seattle suggests persons with CMT eat a

heart healthy diet: So what is that? Fresh ruit, vegetables, protein (lean/no

fat cuts of red meat if you have to) chicken, fish, plus take a good

multi-vitamin, get a flu shot, stay up to date on other immunizations, etc.

Drink enough water. You can look up 'heart healthy diets' on the net.

As for my experience, this includes NO fast food (which is highly caloric and

heart attack/artery clogging material) I also do not use butter or salt. I

season with herbs, peppers, salsa, etc. I do not eat any red meat except for an

occassional 'gourmet' burger (from a place I know has quality beef) I do not eat

bread or eggs unless it's all home-made/free range. I eat 4 vegetables and 5

fruits a day, salads, drink about 1.5 liters of water, low-fat cottage cheese,

oatmeal, and brown rice. I also exercise frequently. And I take Vitamin E as

antioxident.

I am 5'5 " and now weight 115, as opposed to 160 4 years ago. I have never felt

better, have no heart or cholesterol issues and am at the low end of my BMI. Any

immune problems I had in the past were allergies due to various pollens and

molds, for which I had treatment. I also learned to stay away from cheeses (due

to molds)

My nutrition may sound boring, but it isn't. I get the nutrients I need, the

brown rice stabilizes my blood sugar levels so those 'urges to snack' aren't

there. I also have much more energy.

It works well for me.

Have a look through our Files on the Nutrition for Muscles and Nerves folder.

Good articles there.

Gretchen

[Guest guest]

Well this isn't really an immune disorder so I don't really think any change in

diet (execpt to lose weight) would really help much. I

could be wrong but its nothing I've ever heard of helping.

Ron

dietary question

Hi all,

I am a lurker, have been reading posts for some time now to understand more

about this condition.� I have a dear friend with CMT� My question is:�

from what I've seen, CMT gets so much worse when the body is under attack from

any sickness, etc.� Has anyone ever tried dietary intervention to strengthen

the immune system and thereby control the symptoms?� If so have they seen any

success with it?� I know the raw diet and/or the gluten free, casein free and

soy free diet are supposed to be very good for strengthening the immune

system.� Is this worth looking into?� I'd appreciate any insight, positive

or negative.

Cook

�

Hi everyone- sorry not to chime in earlier, of course I got knock-down sick

this week- bronchitis and sinus infection, ouch!

My experience with CMT and fatigue was that I didn't notice it until I had a

crash in my early thirties with worsening symtoms. All through college and my

twenties I kept up with demanding schedules. At one time I was commuting an hour

each way to teach five days a week with first and second graders in LA, and

going to night school and Saturday classes. Of course, I could watch a lot of

movies in the evening back then, but today I couldn't repeat that schedule.

I always needed lots of sleep and my parent say I was the best baby because I

loved napping so much .

My 2 year old found me, I'll try to post more soon. My main message is that it

wasn't an issue for me until serious weakness set in, it feels like I push so

hard to get through the day, my system just can't keep up. Some days I wake more

tired than when I went to sleep the night before. Of course, I also have little

ones who keep the day very entertaining (no downtime for mama) so that

contributes, too

[Guest guest]

In my experience with CMT, diet has become extremely important. I am now at my

lowest weight of my life 115 lbs., heart healthy, much more physically active.

Brain and Thought power are heightened. Weight loss for anyone over their BMI is

* Crucial * for people with CMT.

What I feed myself is all about good heart healthy food. Salads, brown rice,

fruits, vegetables, white meats, whole grains, nix to sugar, fats, coffee, etc.

What I put in your body is fuel for energy.

We just heard from Dr. during Awareness Week that " CMT People are

Overweight " . Pay attention to that. My body is already doing twice as much work

as someone without CMT (means my heart, lungs, legs, etc) are already

overloaded) so why would I comprise myself by not following a heart healthy diet

and exercise program?

Think you * can't loose weight * ? Yes, you can. It will take WORK, discipline

and committment for a better you. But YOU CAN DO IT.

Gretchen

[Guest guest]

Agreed. You need to avoid these kinds of restrictions, as you will likely

deprive yourself of something essential. Remember that gluten is the current-day

bad-guy food substance, and only some people have a problem.

Me, I eat lots of red meat, chicken, and dairy, and I feel great. Eat what makes

you feel good, and don't eat what makes you feel bad. Its that simple.

On Oct 3, 2010, at 10:41 PM, Ron Fraigun wrote:

> Well this isn't really an immune disorder so I don't really think any change

in diet (execpt to lose weight) would really help much. I

> could be wrong but its nothing I've ever heard of helping.

>

> Ron

[Guest guest]

I love doughnuts.......and coffee!

It make me feel good but not look good!

Geri

Agreed. You need to avoid these kinds of restrictions, as you will likely

deprive yourself of something essential. Remember that gluten is the current-day

bad-guy food substance, and only some people have a problem.

Me, I eat lots of red meat, chicken, and dairy, and I feel great. Eat what

makes you feel good, and don't eat what makes you feel bad. Its that simple.

On Oct 3, 2010, at 10:41 PM, Ron Fraigun wrote:

> Well this isn't really an immune disorder so I don't really think any change

in diet (execpt to lose weight) would really help much. I

> could be wrong but its nothing I've ever heard of helping.

>

> Ron

[Guest guest]

I def agree when you are overweight you put more strain on your body. It's much

more heart healthy to be at your correct weight too. I think some of the CMT'ers

out there who are overweight would be surprised how much better they would feel

and how much better their CMT would be if they would just loose some weight. I

saw a pic the other day of a CMT kid who has complained about a lot. He was

overweight. I just thought how much better he would feel if he would just loose

some weight. I bet some of those things he has blamed on CMT might disappear if

he would just loose some weight. That goes for able bodied people too. Being

overweight just puts a lot of extra stress and strain on your body.

>

> In my experience with CMT, diet has become extremely important. I am now at my

lowest weight of my life 115 lbs., heart healthy, much more physically active.

Brain and Thought power are heightened. Weight loss for anyone over their BMI is

* Crucial * for people with CMT.

>

> What I feed myself is all about good heart healthy food. Salads, brown rice,

fruits, vegetables, white meats, whole grains, nix to sugar, fats, coffee, etc.

What I put in your body is fuel for energy.

>

> We just heard from Dr. during Awareness Week that " CMT People are

Overweight " . Pay attention to that. My body is already doing twice as much work

as someone without CMT (means my heart, lungs, legs, etc) are already

overloaded) so why would I comprise myself by not following a heart healthy diet

and exercise program?

>

> Think you * can't loose weight * ? Yes, you can. It will take WORK,

discipline and committment for a better you. But YOU CAN DO IT.

>

>

> Gretchen

>

[Guest guest]

However, losing weight isn't actually that easy if you are unable to increase

your physical output.

On Oct 5, 2010, at 7:33 AM, C m IDN wrote:

> I def agree when you are overweight you put more strain on your body. It's

much more heart healthy to be at your correct weight too. I think some of the

CMT'ers out there who are overweight would be surprised how much better they

would feel and how much better their CMT would be if they would just loose some

weight. I saw a pic the other day of a CMT kid who has complained about a lot.

He was overweight. I just thought how much better he would feel if he would just

loose some weight. I bet some of those things he has blamed on CMT might

disappear if he would just loose some weight. That goes for able bodied people

too. Being overweight just puts a lot of extra stress and strain on your body.

>

>

[Guest guest]

,

Unless you are wheelchair bound, low impact apparatus such as the

healthrider/cardioglide rider. ablounger, ab roller, Jake's back chair, pilates

and tension bands,  are of good use for advanced cases of CMT. If you cannot

walk for any great distance the healthrider ipod and a heart rate monitor is

perhaps the best alternative (they serve as a great coat tree as well). Also

change your diet aiming for greatest nutritional density per calorie. We all get

tired of swimming upstream, but the effects of giving up are quite gruesome. CMT

sucks, CMT and/or type II diabetes, hypertension, gout, rheumatoid arthritis and

maybe lupus is scary.

Ed