Re: Improvements & Infringements-long

[Guest guest]

petizyde enzymes sound interesting. I don't know where I have been but I

never heard of this. Where do you get this product?

[Guest guest]

First of all, I want to respect fully that this topic makes some

members of this board a bit uncomfortable. These things are discussed

regularly on the enzymesandautism board and I would be very happy to

continue it there, should anyone prefer. I would like to respond to

Maureen's comments, but will leave some blank spaces if anyone wants

to skip on to another post now. Or else scroll down.

Okay.

I agree with you (Maureen) exactly, and maybe you said it better. I

am PDD so " expression " and " style " may not be my strong suit. I

admire well-written posts.

I am also aware that none of the experts at the DAN conferences said

to go off gfcf even when taking enzymes. I also know this was before

Peptizyde came out. I understand Peptizyde is designed to be used

with or without gluten/casein food, as the individual prefers. So

both the comments made at a conference before were probably true at

the time, AND that parents are safely and effectively using the

enzyme product Peptizyde now with gluten/casein food (and others are

doing the same with GFCF food) are true. I do not see these as

contradictory due to the timing of events.

I am probably far more cautious and wary of any one item being " it "

than I am optimistic. However, as parents with an array of choices

and others' opinions to digest, we need to be optimistic for our own

sanity. I have wasted so much time, years, following doctors'

recommendations and getting nowhere it just makes me sick. Thinking

about the money…is something I just need to put behind me now. I have

spent hours each day on this (autism spectrum and diet) and related

topics since March. I have a Master's in biological science and

several published journal articles, so enzymes are not a brand new

topic to me. My husband has a Ph.D in biochemical science and works

as an analyst on new technologies in food production. He has dozens

of scientific articles published as well as a few books and CD-ROM

for universities. Not that you NEED all that. Geesh! I would like a

few of those years back. It just so happens that we are familiar with

enzymes and therefore feel quite comfortable with the topic. Any of

the therapies have a lot to do with comfort level, and as Cheryl

pointed out in another post, people should be allowed to be in their

own comfort level. She makes a good point, in my opinion, that some

people are just not ready for certain things. People come to their

decisions in their own time. And all of us don't need all the

options, or even the same ones.

The results in both the Kirkman and Klaire Lab studies are reportedly

completely parent judged – the same as you or I would " guestimate "

at - " Oh, I feel he has improved about . . .say...yh...30% in eye

contact. " But if it is an improvement to the parent, I am not going

to argue that they do not feel that way. That is their personal

observation and opinion on it. My boys are 7 and 9 years old. So I

have actual TaeKwonDo records, and standardized tests from the

school, and report cards, and spelling tests, and reading tests, and

teacher's evaluations, and all that stuff that is kept as a written

record of my children's progress. That is a little more tangible,

more concrete, and " data " –like. We can easily point on the chart and

say " this is when we did this or that treatment " and " this is diet "

and " that is enzymes. " My oldest son was so severe he was " failed " in

all remedial courses the first quarter of second grade. By the first

quarter of third grade, he was in the top 10% of EVERYTHING in the

entire DISTRICT. So, there is dramatic evidence. However, this

probably more unusual than common. But it is our story.

And I still think my husband and my opinions on their improvement are

just as important. I watched them get wigged out by prescribed drugs

from doctors, told they would " grow out " of the constant 12-hour-a-

day-at-least-I-kid-you-not head-banging. I was told it wasn't a food

allergy or problem because they didn't have a rash. I was told I was

an over-reactive mother when I said they screamed wildly like in

pain. So, at least in my case (and I do not appear to be the only

one), I take " doctor's " advice with a really big grain of salt.

The " experts " in this field readily agree they are not sure what is

going on with each kid and there isn't one protocol to follow and

maybe this will work or try that. That does not inspire the level of

confidence I would like to have.

When we began the GFCF diet, we saw noticeable improvements. I say we

because I am also PDD/SID with chronic fatigue, so this is first-hand

as well as a parent's view. One of my major symptoms was constant

24/7 migraines. Taking prescription meds helped this about 50%. Going

GFCF helped another 15-20%. When we went on enzymes, the migraines

were reduced another 15-20%. With enzymes, I quit feeling sick in my

stomach and throwing up all the time. This was about the same for my

boys. The diet got my oldest from banging his head on the floor EVERY

NIGHT to banging his head on the bed (he finally slept in the bed at

9 years old). With enzymes he quit banging his head completely. The

diet took transitioning from painful screams to quiet crying and

struggled compliance. The enzymes took transitions to happy,

cheerful, ready compliance. My youngest only wanted 5 foods before

diet. With the diet he went to about 8. With enzymes he went to a

happy 30 and started eating 1/3 more (he needed weight). His bowels

finally became regular and he was potty-trained at age 7. I could go

on and on with examples and long-list of conditions they both had

(different for each boy) as well as myself. Our most awesome success

story is posted in the Files section of the enzymesandautism board.

Sometimes when I read it, it seems downright scary because we were

NOT getting better for a very long time. I had this nightmare of the

teenage years looming ever closer as we were stuck in the mud.

The diet helped. The enzymes helped at least as much, plus we got

more. Remember, we even started treatments when the oldest was 6 –

way over the preschool recommendation. I am 40. For me this isn't

just a disorder – it has been my life. So for anyone wanting to know

if there is hope for " older " children...THERE IS. This is just the

experience for us, and for many using Peptizyde/ZymePrime. Anyone

else's experience is theirs. Maybe a different product, maybe a

different treatment. I support everyone's opportunity to try, as it

sounds like many here do.

But here is the comfort level again: My husband and I are very

uncomfortable eliminating entire food groups, and quickly saw that

many people had to then eliminate soy, then corn, then phenols, then

sugar, etc. And then you need to keep adding more and more

supplements to offset the imbalances in the body. I also have my day

full of eliminating dyes, additives, preservatives, dust, and

gluten/casein/soy lotions, shampoos, cleaners, etc. There are the

therapies we used to do (we have been able to discontinue them now).

Oh, I have a job in there somewhere.

However, even if I personally think a product would be completely

safe to use in an unauthorized way, if someone asks a specific

question like " can I use product X with food Y " and I know full well

that the manufacturer repeatedly does not endorse this and can quote

from their site, I will not tell that person to disregard the

warning, the label, the instructions, etc. because this could make

someone seriously ill. And I am not that parent making the decision

for a child I do not even know. Ms. Buchholz even concurred in her

post afterwards.

You seem like a very thoughtful, cautious, and caring mother. I am

sure you want as much information available on all the options, so

you can make good, well-informed decisions. We can all run up quite a

bill looking at all these options, and there are lots of people

willing to help us do that. So caution is well warranted. I am

encouraged by what you wrote.

I am very careful not to do anything I thought would knowingly be

harmful to my kids. Just like every one else. I feel we have nothing

to lose using enzymes (or Floortime, or vit C, etc.) and this is the

healthiest alternative I can give them. But my background and

research gives me that confidence, just as others do with their

chosen treatments. I only needed to make sure that the ones we choose

were doing the job. We have an immediate reaction to casein and so

can tell if peptides are getting through pretty quickly. We ran our

test on a different product first. Three failures. Then Peptizyde

passed with flying colors. Then we kept hearing about more and more

people's successes with this product. One mother was down to 7 foods

with 3 of her children – literally. She not only has been able to add

back potatoes and honey, but practically everything else - but not

peanuts. She was able to get to GFCF because she can expand her menu

with enzymes – and this is after 18 months strict GFCF. She says her

kids are progressing dramatically. Two other mothers GFCF for 1 year,

have added back many other " problematic " foods, with much improved

behavior. It has been 2 months, no regression, more improvement.

Several enjoy being able to just r-e-l-a-x while they are visiting or

in a restaurant or in the park. Besides being easier for me, I just

didn't want to live all stressed out like that if I didn't have to.

But that is just me. I respect each person's decision – it seems like

others have adapted much better. It just doesn't make any sense to me

to give up the gains we have with Peptizyde enzymes. I would never

try to talk someone else out of the gains their child has. We are

here to support each other. IMO.

And I change my " protocol " as I go, just like others change theirs as

more information and experience comes. My kids are in school and what

would have worked as preschoolers, does not work now. And I will need

to adjust as they become teens. What works for me, will be different

for you. We are now " recovered " (per doctor 3 weeks ago). That's

right. Recovered. I can hardly believe it myself, after all this

time. All three of us (of course, being an oldster, it isn't quite

the same for me. LOL). The youngest has already been placed for

advanced 2nd grade. The oldest was honored in school

for " extraodinary creativity and insight. " That is enough gift for

me. My own recovery is just a bonus. Hopefully this will encourage

others in some way.

The enzymes definitely are a big piece of our program. I am glad my

kids are not losing any more time being ill. It is a wonderful place

to be.

.

[Guest guest]

,

Your post was a pleasure to read!!

Congratulations on your recovery. WOW!!

Evelyn

Wrote:

I am PDD so " expression " and " style " may not be my strong suit. I

admire well-written posts

We are now " recovered " (per doctor 3 weeks ago)