Need some help...

[Guest guest]

Hi, I have finally ordered some of the enzymes and other stuff... I'll give a

little list of what I have on hand. From Kirkman's, I have Super Nuthera and

Peptidase Complete. From Houston's, I have No-Fenol and Zyme Time. My son

is not on the GFCF diet at this time. Diet consists of bananas, melon, apples,

peanut butter cookies, Quaker cereal bars, and Mc's fries and V8

Smoothie. He is almost 5, weighs about 55 pounds. I started him two weeks ago

or

so on one cap of Peptidase Complete. Last week I added one cap daily of Zyme

Time and No Fenol. His bowel movements have become less frequent, he was going

about 5-10 times a day. Now it is about three. For the first few days, he

had really runny poop. Now it is getting a quite a bit firmer, wouldn't really

call it solid though. Still very stinky and yellow. He is stimming out of

control. Likes to smack the tv and also stims on the wall with his fingers.

These were occasional things before, but it is almost constant right now.

Also, he is turning into a very moody person. Crying over nothing and getting

really upset. Is this die off? Should I continue? I hate to see him so

upset... I am not doing the enzymes under the care of a doctor. I see on the

directions it mentions a cap at each meal. MY problem is that does not

really eat set meals. Pretty much steadily eats through out the day. He just

started back to school On Tuesday, so he will get back into a little bit of

routine with eating at set times, but when at home, really grazes. So, how do I

know when I should give the enzymes? I don't want to give him too much, but

also

don't know if I am giving him enough. Thanks for any help!

P.S. I was giving Super Nuthera for a while a month or so back, but didn't

see much of a change in him, just got VERY hyper. So, I have stopped giving

that...

[Guest guest]

> Hi, I have finally ordered some of the enzymes and other stuff...

I'll give a

> little list of what I have on hand. From Kirkman's, I have Super

Nuthera and

> Peptidase Complete. From Houston's, I have No-Fenol and Zyme Time.

My son

> is not on the GFCF diet at this time.

If your child is not gfcf, then you should be using HNI Peptizyde and

not Kirkman Complete. Last I checked anyway, Kirkman enzymes are for

use with gfcf only.

>> Diet consists of bananas,

melon, apples,

> peanut butter cookies, Quaker cereal bars, and Mc's fries and

V8

> Smoothie.

Definitely No-Fenol enzyme.

>>He is stimming out of

> control. Likes to smack the tv and also stims on the wall with his

fingers.

Smacking his hands on things is a sign of vitamin B toxicity. Remove

the SNT and see if that helps. SNT also aggravates phenol conditions

and emotional instability, and No-Fenol enzyme tends to NOT help with

that. Another reason to remove it and see if that helps.

> routine with eating at set times, but when at home, really grazes.

So, how do I

> know when I should give the enzymes?

Mix a little in juice or something, and have him drink occasionally

thru the day. If you keep the juice cold, the enzymes should remain

active for about 4 hours.

I don't want to give him too

much, but also

> don't know if I am giving him enough. Thanks for any help!

>

> P.S. I was giving Super Nuthera for a while a month or so back, but

didn't

> see much of a change in him, just got VERY hyper. So, I have

stopped giving

> that...

If he is still having these problems without the SNT, then rotate the

fruits you are giving him, because it can be likely that he tolerates

certain fruits with No-Fenol, but not all of them.

Dana

[Guest guest]

Liz

thanks for responding...I was beginning to think that my messages hadn't gone

through.

anyway...I wrote two pages of goals that addressed his problem areas but it

didn't matter b/c they never got past those test scores.

the major issue is that he is only four...if he were already in kindergarten

they would see how he is affected and be rushing me to sign papers...

deb

[Guest guest]

Hi Deb,

I'm so sorry to hear about . What an indescribable loss that must be.

A thump on the head to your school district! A child certainly does not need

to have academic deficits in order to be entitled to special education! My

child (age 15) receives special education based on his social deficits,

writing deficits (handwriting and written language) and others. He brings

home As and Bs on his report card. The idea is to pinpoint the areas in

which he needs help and go after the school district for them. They *are*

responsible for helping in those areas.

Liz

worshiponlyhim wrote:

> Hi everyone...I haven't gotten to post in a while...and am including

> an update here and my questions will be listed below it...this way

> any newcomes will know a little about us and those who remember us or

> don't will know what is going on.

>

> Hi everyone

>

> Sorry I am not around more but I do check in with you from time to

> time. Since losing things have not quite slowed down the way

> I hoped. We of course are still going back and forth between

> numbness and pure pain...sometimes I enjoy the days of numbness and

> at other times I am restless with it b/c I want to get through this.

> We miss more every day and I hear the second year is the worst

> so I guess we are still never new to it all.

>

> Gaige has had a very hard time with 's death. He started

> having a lot of unusual behaviors and loss of control. This prompted

> us to see a psychiatrist and also to have a full developmental _eval

> with a psychological. Gaige had several cafe au lait spots so they

> sent us to a geneticist to be evaluated for neurofibromatosis.

> Fortunately that was ruled out but they did have some usual lab

> finding which might point to a metabolic disease. of course just

> losing a child to a rare disease makes me very uncomfortable to now

> see the doctors who used to treat and its just all too

> familiar. Gaige has just this week been diagnosed with Dysfluency

> (stuttering), tachycardia and hypertension...we are seeing a

> cardiologist at the end of the month. I am not sure what to make of

> the heart issues and hope maybe his psychiatrist is wrong and not a

> good takeer of blood pressure. Gaige's current diagnosis are

> 'extreme' ADHD, Aspergers, over-anxiety disorder, mild delays in fine

> motor and then sensory and behavioral issues. In two weeks we start

> with 30 hours of behavior therapy a week. Gaige was also exited out

> of the spec ed program at the end of the school year (I coudlnt go to

> the IEP meeting b/c of and guess what happened) and we just

> had a new eligibility meeting on wednesday which did not go well and

> so that is why I am writing.

>

> Bliss has done quite wonderfully...I still marvel when I see her baby

> pictures and how spastic her muscles were and typical she looks now.

> Of course she does hae some residual effects but to the untrained eye

> (which doens't include special moms) she looks normal. She still

> goes to a special EI program three days a week and we are starting

> transition this month. I am not sure she will qualify enough to get

> a day program but we shall see.

>

> I just restarted my old business and finished my website tonight. I

> would love to share it with you. It has several items that cater to

> help friends of people who have lost children which might be helpful

> in our special needs world. The site is listed in my signature.

>

> ******so here's where I need the help. Because of Gaige's diagnoses

> and the state regs, he is eligible under at least three different

> categories for special ed. However, b/c he did alright on his

> standford-binet scores they are saying that his learning is not

> affected by his disabilities and how proud we should be of that...of

> course we dont' see it that way at all. Gaige has major behavioral

> issues, sensory problems and completely debilitating transitional

> skills. We ended up tabling the meeting b/c we were at an impasse

> and he needed a new OT eval anyway. However, even if he needed OT

> and now speech b/c of the dysfluencey, they don't consider that

> delays in two areas b/c stuttering doens't quantify as a delay and

> they said he would just get outside services for that but not

> classroom instruction. There is NO way this child could go to

> regular kindergarten next year or even regular preschool this year.

> How do you get past them understanding that even if they have an

> average IQ they still have major needs? Any help there?

>

> One other thing...Gaige has never had the autistic physical tics and

> such...altho I have tried to find out about whole complex body

> movements and no one seems to know what they are. Anyway, I have

> noticed in the last few weeks him doing more strange things with his

> hands like clawing things...and I mean unintentionally, and holding

> his hands strangely...he has also started using his middle finger to

> point (altho that is humorous it is new)and even some teeth grinding

> while awake (I don't know that he does it asleep). It seems like if

> these were the autistic body things that they would have been there

> all along...do you think he could just be developing these now?

>

> thanks and sorry this is so long

>

> deb...mom to three great adopted kids... (07.04.96-05.26.03)

> with Mitochondrial Disease, Gaige age 4 with Aspergers Syndrome and

> Bliss age 2 with very very mild Cerebral Palsy.

> www.HeartLiftersGallery.com

> NurturingHeavensKids/

>

>

>

[Guest guest]

Deb-

We heard the same thing. " He doesn't qualify for services. His test scores are

too high. " HA. That's what we said to them. We went straight out and got an IEE

(Independent Educational Evaluation) at the district's expense. And guess what.

It turned out that he was eligible for OT, speech therapy, and adaptive PE. It

turned out that his verbal IQ was 65 points higher than his performance IQ. That

discrepancy alone should qualify him for services. It turned out that he was

eligible for a special program run by the district.

Liz

VisibleWorship@... wrote:

> Liz

>

> thanks for responding...I was beginning to think that my messages hadn't gone

> through.

>

> anyway...I wrote two pages of goals that addressed his problem areas but it

> didn't matter b/c they never got past those test scores.

>

> the major issue is that he is only four...if he were already in kindergarten

> they would see how he is affected and be rushing me to sign papers...

>

> deb

>

>

[Guest guest]

a

I have been trained in the Law...have a copy of the IDEA and our state regs

on how they use the IDEA...the issue is that for eligibility they have two

prongs...the first is the diagnosis...our of the fifteen or sixteen different

categories...i can get gaige eligible under three of them...other health

impaired

(for adhd)...speech disorder (dysfluency)...and autism for aspergers...the

issue is this...

they dont' think he qualifies under the second prong which states that the

disability must affect the child's ability to learn. they are figuring if he

did okay on the Stanford-Binet scores that he can learn okay. There are no

written state regs regarding what is expected of an almost five year old in a

preschool program...that is where the problem lies. I need to find a way to

effectively prove that his learning is affected...got any ideas about that?

deb

[Guest guest]

Can I have the short version? I briefly glanced at previous posts,

but I didn't have time to read fully. Test scores alone can NOT be

used to determine eligibility. The best thing to do is arm yourself

w/ knowledge of how the special education system works. Try

slaw. Excellent web page. Even better book. It explains

everything you need to know to win. I hope that helps. The sad thing

is that there is NO way around having to learn atleast the basics. If

money is an issue(for buying the book) then ask your preschool

special education annex or parent resource center(whereever they do

spec ed testing on prek) for Parent's Rights to Spec Ed. Most states

if not all have this available free of charge. Also look up your

states Department of Education. Look under special education. They

list contact info. There is all sorts of good info once you realise

to look. If you have trouble then email me where you are from. I've

gotten pretty good at finding decent links.

Good Luck, a

[Guest guest]

Deb,

Of course he can learn. The problem is that HE WILL NOT BE ABLE TO LEARN IN

A TYPICAL SCHOOL ENVIRONMENT. Maybe this needs to be pointed out to

them explicitly. He will need supports or modifications in order to succeed at

school.

Good luck,

in Massachusetts

> a

>

> I have been trained in the Law...have a copy of the IDEA and our state regs

> on how they use the IDEA...the issue is that for eligibility they have two

> prongs...the first is the diagnosis...our of the fifteen or sixteen different

> categories...i can get gaige eligible under three of them...other health

impaired

> (for adhd)...speech disorder (dysfluency)...and autism for aspergers...the

> issue is this...

>

> they dont' think he qualifies under the second prong which states that the

> disability must affect the child's ability to learn. they are figuring if he

> did okay on the Stanford-Binet scores that he can learn okay. There are no

> written state regs regarding what is expected of an almost five year old in a

> preschool program...that is where the problem lies. I need to find a way to

> effectively prove that his learning is affected...got any ideas about that?

>

> deb

[Guest guest]

I'm sorry. I hope I did not offend. It's just that for a long time I

did not know the law. And I know that is a big isue.

Also thank you for clarifying. That is my fight right now. I'm trying

to prove my son's PDD-nos and ADHD are affecting him academically. I

know it, but proving to them is quite hard. Now you have the added

problem of it being pre-k. I take it you have any number of

disabilities, but proving his delays is the issue. Usually in prek

they test on the areas of development including comprehension,

speech, social, self help, and motor skills. A delay in these areas

would secure him an IEP. Can you prove a delay? Keep talking to me.

I'd like to help if possible. I'm going through similar issues. I

know it is frustrating.

a

, VisibleWorship@a... wrote:

> a

>

> I have been trained in the Law...have a copy of the IDEA and our

state regs

> on how they use the IDEA...the issue is that for eligibility they

have two

> prongs...the first is the diagnosis...our of the fifteen or sixteen

different

> categories...i can get gaige eligible under three of them...other

health impaired

> (for adhd)...speech disorder (dysfluency)...and autism for

aspergers...the

> issue is this...

>

> they dont' think he qualifies under the second prong which states

that the

> disability must affect the child's ability to learn. they are

figuring if he

> did okay on the Stanford-Binet scores that he can learn okay.

There are no

> written state regs regarding what is expected of an almost five

year old in a

> preschool program...that is where the problem lies. I need to find

a way to

> effectively prove that his learning is affected...got any ideas

about that?

>

> deb

>

>

>

[Guest guest]

In a message dated 11/18/2003 12:40:58 PM Central Standard Time,

swamp1@... writes:

The problem is that HE WILL NOT BE ABLE TO LEARN IN

A TYPICAL SCHOOL ENVIRONMENT. Maybe this needs to be pointed out to

them explicitly

...

They know it...they have even said things like 'well he can get that when he

starts kindergarten' so they know he is going to a problem...but they don't

feel its thier job to get him ready for kindergarten...I don't know what to say

to them to help them understand. One regional official I spoke with said that

if for no other reason, he needed to be in school the rest of this school

year...do ESY...all so he could transition easily to kindergarten. Last year it

took six weeks to get him transitioned and it was brutal. Then after any

break it took two weeks...and if we had a substitute bus driver or teacher, he

would have a horrible day.

Part of the issue is also they don't wnat to recongnize his aspergers

diagnosis. Our pyschiatrist who sees us weekly, writes all his notes by

hand...they

said i could have gotten anyone to write b/c they couldnt' read it. I signed

a release of information and ASKED them to call him and they chose not to do

so. Now, the psych and I know he falls somewhere on the spectrum but he isn't

convinced its aspergers but thinks its the best they can do. There is

actually a lot of evidence that Gaige has a metabolic disease but they are hard

to

find so while we have some compelling information, we don't have a definite

diagnosis.

thanks

deb...mom to three great adopted kids... (07.04.96-05.26.03) with

Mitochondrial Disease, Gaige age 4 with Aspergers Syndrome and Bliss age 2 with

very very mild Cerebral Palsy.

www.HeartLiftersGallery.com

NurturingHeavensKids/

[Guest guest]

Have you had him evaluated fully by the school? Let them do their own

testing. Then if it's inappropriate ask for an IEE. I don't care if

he has 10 dxes or zero; it is suppose to be about meeting the child's

individual needs. Meet the needs NOT the dx. JMO!

I am still unclear, has he ever had spec ed services? If so when, how

long, and w/ what reasoning?

a

[Guest guest]

Hi Deb. This article might help to sort things out.

http://www.wrightslaw.com/info/elig.index.htm

[Guest guest]

I'll be taking the areticle with me to meet with Prince today.

Re: ( ) need some help...

Hi Deb. This article might help to sort things out.

http://www.wrightslaw.com/info/elig.index.htm