Re: New to world of Autism

[Guest guest]

Gracie's Mom--Welcome to the group. The people on this list will help

you a ton!! Enzymes as well as other things will most likely help

Gracie. The bad BM's is a definite indicator or problems, but it could

be food intolerance (GFCF), yeast, or many other things. You will need

to do some labs along the way, and address each issue. Please realize

that many of us have had great success with our kids, and you can

expect to do the same if you work at it. What works for one kid

doesn't always work for all, but you will gain a lot of knowledge from

the experiences of other parents fighting the same fight. I am putting

links to 2-other lists that have been a great help to me. Hope this

helps, and here are the links.

abmd/

/

> Hi everyone, we are new at this, this is a club I really don't want

> to be a part of. Tomorrow we go to the Neur. to get out offical DX

> of PDD. My 3 year old daughter Gracie has no speech, only fleeting

> words, she has fleeting eye contact and only turns around 40% of the

> time when called, she eats like a champ, but her BM's are never hard

> they are nasty, is that an indacator of issues. She is starting to

> babble, which we are so excited about. I want to try enzymes, how do

> we start and how do I dose and what are the side effects. Can

> anyone direct me to research. Where do I get them, should I also

> try the GFCF diet?Will these kido's stay on enzymes their entire

> life. Just a thought, I have never fought so hard to gain

> information and education for my daughter, the medical community

> seems so busy pointing finges while giving me the finger. I just

> love my baby so much and want her have an amazing life free of

> social injustice. Thank you for your time and consideration.

> Gracie's mom

[Guest guest]

Oh honey,

I remember being there. Let me give you a little insite into my son Ethan.

He is age three and diagnosed with PDD:NOS (Autism). He used to not walk on

grass with his shoes on, not play with wet or dry sand, not touch jello, fight

brushing teeth, not go down slides, swing or teeter totter, not walk down steps

(crawled down at age three), did not talk AT ALL until we took him from whole to

fat free milk (not sure why that made a difference...but i didn't care at least

he had some words), no pointing, no labeling, drew shapes (circles, squares,

triangles and stars) before the age of 2, panic attacks at new foods (only at 6

or so), panic attacks at new types of play involving equilibrium issues and the

shadow portion to bear in the big blue house. Only watched pixar animated

movies. There is more but hard to remember all because.....

He is now talking in complete sentences, eating 10-11 different foods or so,

climbing up and sliding down slides, loves the teetor totter and swings, walks

down stairs with stuff in his hands, brushes his own teeth, and am very excited

about his next IEP.

That is not to say you will have the same success. It may be less,,,,it may be

more. Just remember that because we are all biologically different so that

everyone will have different types and amounts of success. I have seen children

who have success with different types of things. Most however that I have seen

have been dietary. I have seen parents say GFCF diet turned their child around

and others say it didn't do anything. I have seen parents say that enzymes were

the key to their child's success and others say enzymes didn't do anything. I

myself have used enzymes but it didn't help ethan with behavioral, mood or

ability but it did help with him not being as hungary. Child eats like a

horse!!...LOL. In that i mean ethan already had significant success but enzymes

did help him to stop eating everything in the house and not have fits

(comparable to hypoglycemia) where he would get cranky and sweaty if he was

hungary. Yet he dosen't test positive for diabetes....it is more mood

based. His mood was impressive over the last 8 weeks without enzymes except for

that 15 minutes before it is time to eat ) enzymes did help ethan get over

that issue and to be fuller longer do to getting more nutrients that he normally

wouldn't get from such a restricted diet.

I just wanted to let you know that all of us have felt we didn't want to be

there...however many of us have helped our children improve dramatically to

become the best people they can be. Research is the key!! Become informed. And

there is alot. I still haven't read everything but am working on it. ) There

are lots of great groups including this one where parents were able to help

their children reach their best potential.

I am available to chat anytime,

)

[Guest guest]

Gracie's mom,

> Hi everyone, we are new at this, this is a club I really don't want

> to be a part of.

Yep. Not fair, not fun. But welcome anyway.

> Tomorrow we go to the Neur. to get out offical DX

> of PDD.

Good. Some people don't want their kids labelled, other people have

other reasons for not pursuing a diagnosis. We have a diagnosis of

ASD, which in the report they just refer to as autism. My school

district seems not to know the difference. This has greatly worked

on our behalf. The word is a powerful tool here. We received

fabulous early intervention services, whatever we asked for (of

course, we were paying for them, too, but still...), and when he

turned three, we had our choice of schools, no limitations. I

certainly don't want to tell you what to ask of your neuro., but if

you're getting PDD anyway, I would say the A-word is very

intimidating to some school districts. So far I've never been sorry

we have the diagnosis.

Others may have very different feedback. It would be nice for you to

have both sides to consider.

> her BM's are never hard

> they are nasty, is that an indacator of issues.

Yes, it can be an indicator. Of leaky gut, of yeast, of bacteria, of

food allergies or intolerances... The list is long.

> I want to try enzymes, how do

> we start and how do I dose and what are the side effects.

Houston enzymes www.houstonni.com are overwhelmingly recommended as

the best. That's what we use. Without knowing more about your child

it's hard to give specific recommendations, but in general most

people start with Zyme Prime, which is a broad spectrum product.

Give 1/4 to 1/2 capsule with two to three meals per day, increasing

the dose every few days until you're at a full capsule. Add in the

Peptizyde the same way. Pep is the only enzyme product that has been

shown to replace the gfcf diet. If you know your child has issues

with phenols, then use AFP Pep and the SCD version of Zyme Prime

instead. Once you're ramped up on those two enzymes, research and

consider No-Fenol. A lot of kids are doing great on that one, as

well.

There can be side effects, but in general, they will be accompanied

by good progress. Some kids sleep more, some sleep less, some get

grouchy, some stim a little more...

> Can

> anyone direct me to research.

www.enzymestuff.com

Enzymes for Autism and Other Neurological Conditions by DeFelice

> should I also

> try the GFCF diet?

You certainly can. I would suggest starting enzymes first though, as

they do more than just food eliminations do. Then once you're

adjusted to enzymes, you can see if adding in the diet is helpful

and/or necessary.

> Will these kido's stay on enzymes their entire

> life.

Some might, some won't. Some kids seem to be able to leave some or

all of the enyzmes behind once their gut heals, which looks like it

can take 6 months to even a few years.

> Just a thought, I have never fought so hard to gain

> information and education for my daughter, the medical community

> seems so busy pointing finges while giving me the finger.

Yep. I'm used to it now, but I will never lose my anger and

frustration.

Good luck and keep us posted with what you decide and how it's going.

[Guest guest]

Gracie's Mom,

It is very emotional to begin this journey. At least you found this group

list early on--there are great people here to help.

Someone mentioned getting the " Autism " diagnosis vs. PDD. I would agree with

that. The " A " word opens doors for services that PDD doesn't. For example in

Florida, you are not eligible for MedWaiver with PDD but you are with Autism

(of course, we have been on the waiting list for over four years--LOL). Also, if

you want services throught he public schools, " Autism " gets your child more

services than " PDD " .

Don't expect the medical community to help much. There are only a handful of

truly educated MD's out there, specifically with regard to autism. Read

DeFelice's book Enzymes for Autism and other Neurological Conditions, Children

with Starving Brains by McCandless, look at www.megson.com , google and

a lot. You will be your daughter's best doctor and advocate.

My son was GFCF for over 4 years. It was definitely very helpful for him but

the Houston enzymes (no other brand helped) enabled him to go off the diet.

The diet is very restrictive, as is the SCD diet. I love not worrying about what

has gluten, what has casein. The enzymes enable most people to get off the

GFCF diet. Not all, but most.

Good luck. Also check out www.enzymestuff.com as well as www.danasview.net.

Robin

[Guest guest]

>>Can

> anyone direct me to research.

This site has good info

http://www.enzymestuff.com/

>>Where do I get them,

Here are two online suppliers, I use HNI [the first one]

http://www.houstonni.com/

http://www.kirkmanlabs.com/

>>should I also

> try the GFCF diet?

You can if you want. Some kids need foods removed, even with enzymes.

>>Will these kido's stay on enzymes their entire

> life.

For my family, chelation removed the need for enzymes or any food

restrictions

http://www.danasview.net/chelate.htm

Dana

[Guest guest]

> >>Can anyone direct me to research

If you are interested in any research in particular, please post so

we can provide anything available.

> >>should I also try the GFCF diet?

This is an option. If you are interested in diets, then also consider:

- Feingold www.feingold.org

- Specific Carbohydrate Diet www.pecanbread.com

- yeast control diet www.candidapage.com

....and there are some others.

The Feingold is a bit different from the others which have the

premise of taking out foods that one is not properly digesting. The

Feingold takes out artificial additives that are not real 'food' and

the body has to detox. It also takes out salicylates/phenols which

are a chemical in foods (particularly colored fruits and vegetables)

that can provoke negative reactions.

I think enzymes are good to start first because they are:

- easier

- cheaper

- cover foods that you know about and ones you don't

....and then work on food chemicals or diets. This way the enzymes can

be breaking down food while you are figuring out and mastering a

special diet.

> >>Will these kido's stay on enzymes their entire life.

Depends. some kids are already off enzymes. One of my son's does not

*need* enzymes but the other needs Peptizyde about 50% of the time.

Also depends on what is causing the problems. Some people need to get

rid of bacteria or yeast, then let the gut heal. Some need detoxing

for full healing. Others need to stay off of artificial additives.

And so on.

Best with this,

.

[Guest guest]

Gracies mom,

Go to www.909shot.com,

www.cbcutah.com

www.autismresearchinstitute.com

for starters.Also, the files of the autism