Re: very worried mom (NIZEROL)

May 1, 2003

Hi Tammy, it does sound like severe die-off, and he really hasn't been it long

enough yet for the die-off to be over. What you're describing sounds a great

deal like what we went through with my son when we switched to Diflucan. It was

a nightmare -- it enhanced his autistic characteristics to the point that I

barely recognized him -- but it did end and he came out on the other side so

much more alert, less stimmy, more focused, happier, more easy-going, etc.,

etc..

I have a question for you: Why did you take away the Vanilla Rice Dream and

replace it with Vanilla soy drink? Is your little guy allergic to rice? Or is

it the carbohydrates? The flavored drinks have a lot of sugar in them, which

feeds yeast. You could try buying the plain enriched Rice Dream and adding some

vanilla and a sugar-free sweetener instead. Or you could do that with the soy

drink as well.

All of our kids are on the same diet as you described with your son -- limited

sugars and carbs, no tropical fruits, no red berries, no red and blue dyes, etc.

There are some helpful food ideas at www.nids.net. I believe you need to click

on " For Parents " and then scroll down to " The Do's and Don't's of the Diet " .

Good luck!

Donna

very worried mom (NIZEROL)

Hi fellow nids families,I am writing the group to find out if anyone else

has had the same problems with nizerol as I am. Dr. G started our 3year old son

on nizerol April 19th, it has since been a great battle first to give it to him

and secondly behavior wise. My son is normally a very happy child and was doing

really well with his behavior therapies, but since the nizerol he has been a

totally different child. Very hyper, aggressive, uncooperative, hitting himself

in the head, bitting, head butting, throwing himself on the floor over and over

in a fit, stimming a lot, throwing things, crying or laughing out of the blue,

sometimes lathargic. Also very irregular bowels, constipated to the point of

blood in the stools. Irregular sleeping patterns. Has bad breath and a lot of

gas.Does this sound familiar to anyone. Dr. G thinks its a die off reaction and

also with the last blood results his allergies were sky high. He told me to put

him on very limited carbohydrates, no be!

rries, no pinaple, mango, or papaya, no cinnomon, limited citrus, nothing

with red or blue dyes in it. What do I feed this little guy? he is already

limited in his diet. I took away his vanilla dream rice (which he loves)

replaced it with so nice vanilla soy drink and goats milk (which he hates) I am

really stumped on this one Dr. G wants to wait another week and has ordered more

blood work to be done, but in the mean time I am very worried and concerned.I

would appreciate any input you would have .Thank you

Tammy

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

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

May 1, 2003

thanks for the reply Donna,

I hope the results will be the same as yours. as for the rice milk, yes it was

the carbohydrates issue and the reason for soy is because my son has always

drank the vanilla flavor also I recently learned that the rice dream is not

gluten free. but I am really trying to push the goats milk. As for the diet DR.

G. said he had too much carbs. but all he eats is patatoes, raw carrots, and

toast for breakfast or sandwich for lunch. he does not eat rice or pasta.

Donnaaron <donnaaron@...> wrote:Hi Tammy, it does sound like severe

die-off, and he really hasn't been it long enough yet for the die-off to be

over. What you're describing sounds a great deal like what we went through with

my son when we switched to Diflucan. It was a nightmare -- it enhanced his

autistic characteristics to the point that I barely recognized him -- but it did

end and he came out on the other side so much more alert, less stimmy, more

focused, happier, more easy-going, etc., etc..

I have a question for you: Why did you take away the Vanilla Rice Dream and

replace it with Vanilla soy drink? Is your little guy allergic to rice? Or is

it the carbohydrates? The flavored drinks have a lot of sugar in them, which

feeds yeast. You could try buying the plain enriched Rice Dream and adding some

vanilla and a sugar-free sweetener instead. Or you could do that with the soy

drink as well.

All of our kids are on the same diet as you described with your son -- limited

sugars and carbs, no tropical fruits, no red berries, no red and blue dyes, etc.

There are some helpful food ideas at www.nids.net. I believe you need to click

on " For Parents " and then scroll down to " The Do's and Don't's of the Diet " .

Good luck!

Donna

May 1, 2003

Hi Tammy,

With regards to diet, does Dr.G mind tomatoes? Because we started giving

Matt spaghetti sauce twice a day with no pasta, just lots of vegetables

hidden in it and lots of ground beef or chicken. He eats about three cups a

day and it really agreees with him. We use YU brand rice milk which is

pretty good, they also make a soy version, maybe your little guy might like

that. We make ice cream with coconut milk, it's an aquired taste. Try to get

a lot of water into him, that might help with the constipation. Unflavored

or lightly flavored snow cones are an option.

Re: very worried mom (NIZEROL)

> thanks for the reply Donna,

> I hope the results will be the same as yours. as for the rice milk, yes

it was the carbohydrates issue and the reason for soy is because my son has

always drank the vanilla flavor also I recently learned that the rice dream

is not gluten free. but I am really trying to push the goats milk. As for

the diet DR. G. said he had too much carbs. but all he eats is patatoes, raw

carrots, and toast for breakfast or sandwich for lunch. he does not eat rice

or pasta.

>

> Donnaaron <donnaaron@...> wrote:Hi Tammy, it does sound like

severe die-off, and he really hasn't been it long enough yet for the die-off

to be over. What you're describing sounds a great deal like what we went

through with my son when we switched to Diflucan. It was a nightmare -- it

enhanced his autistic characteristics to the point that I barely recognized

him -- but it did end and he came out on the other side so much more alert,

less stimmy, more focused, happier, more easy-going, etc., etc..

>

> I have a question for you: Why did you take away the Vanilla Rice Dream

and replace it with Vanilla soy drink? Is your little guy allergic to rice?

Or is it the carbohydrates? The flavored drinks have a lot of sugar in

them, which feeds yeast. You could try buying the plain enriched Rice Dream

and adding some vanilla and a sugar-free sweetener instead. Or you could

do that with the soy drink as well.

>

> All of our kids are on the same diet as you described with your son --

limited sugars and carbs, no tropical fruits, no red berries, no red and

blue dyes, etc. There are some helpful food ideas at www.nids.net. I

believe you need to click on " For Parents " and then scroll down to " The Do's

and Don't's of the Diet " .

>

> Good luck!

> Donna

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

May 1, 2003

Tammy,

Harmony Farms makes gluen-free rice milk. The original flavor has 7

grams of sugar per cup. Will your son eat ground meat, such as turkey,

beef, or chicken? You could put a tiny bit of tomato sauce on it for a

sort-of spaghetti and good protein. What about jerky? There's some good

gluten free jerky made by Hat Creek with no preservatives and only 3 grams

of sugar (their # is 1-800-688-7233, ask for the Original Turkey Jerky. Tons

of protein, no work!! We do a lot of soups- chicken with vegetable, bean

soups, etc. Health food stores carry some gluten free ones. Shelton's

makes a Chicken and rice soup and a chicken and vegetable soup that has no

preservatives, artificial stuff, or gluten/casein. What about meatloaf??

Do you have Special Diets for Special Kids by ? Lots of her stuff

is sugary, but there's a few good recipes in there. Will your son eat eggs?

(mine won't, I wish he will. I mix it in fried rice to get some in him)

Good luck! My son tolerates very few foods GI wise, and I hate to cook,

but I'm VERY fortunate to have a huge health food store by us that carries a

lot of gluten free products.

Best wishes, Becky

Re: very worried mom (NIZEROL)

> thanks for the reply Donna,

> I hope the results will be the same as yours. as for the rice milk, yes

it was the carbohydrates issue and the reason for soy is because my son has

always drank the vanilla flavor also I recently learned that the rice dream

is not gluten free. but I am really trying to push the goats milk. As for

the diet DR. G. said he had too much carbs. but all he eats is patatoes, raw

carrots, and toast for breakfast or sandwich for lunch. he does not eat rice

or pasta.

May 1, 2003

Just want to add, too, that you can substitute xylitol (and cousins mannitol and

maltitol) for sugar in any of ' recipes. You can purchase them at

www.xylitolworks.com. Plus you can find it at some health food stores.

My son hates ground meat; I guess the texture bothers him, but to get around

that I puree the meat and veggies in the sauce so it all comes out smooth and he

eats it very happily.

Will your son eat potato pancakes? It's a great way to get eggs into him while

he's still eating the potatoes that he loves. You just make a batter out of

mashed potatoes, milk substitute, and raw egg (I add salt, pepper, and garlic),

cook it on a grill like pancakes, and serve it with some unsweetened applesauce.

Or you can probably get a good recipe from ' book. There are also

quite a few websites where you can get ideas. Try doing a Google search.

One thing that's important to remember -- even if your son won't eat much now,

as he begins to get better, his appetite will increase and the range of foods he

will try and enjoy will widen.