Re: KiKi update/evaluation

[Guest guest]

Please think twice before you cancel... Yes your child is sick..but may I say

the

therapy in conjunction with the SCD and other modes of treatment are equally

as important...this is crucial for your child to also have early childhood

intervention from a special educational,OT, PT SLP etc standpoint... These

kids have ongoing gut issues and they will not go away over night you need

to do therapy with the health treatments.. Please think very hard before you do

this.. I would advise you not to cancel I would strongly advise you not to

cancel...I know it is difficult but you can do it and it is what is best for

your

child..Research does proves children's brains are much more pliable for

learning when younger and dispite the gut and all other issues they do learn

differently and this therapy/special ed is very very important.

Sincerely

Sandy Consultant in ASD>Dan Nurse ,Certified from University SPED in

ASD, GFCF - evronmentally healthy 8+ yrs..SCD 2 months..

>

> We descided over the weekend that we more than likely will cancel

> the appointment for her evaluation. I have descided thanks to

> talking to (grandparents/husband and pecan's guidance), that I am

> truly taking a still physicaly SICK child to an evaluation..to be

> completely stressed out by over eight evlauators.....possibly making

> her auto-immune conditions kick in (ASD/celiac have been considered

> auto-immune). Stress makes this problem worse, especialy when you

> are still sick and trying to heal your gut that cuased it in the

> first place, the SCD way.

>

> This does not make since. IF she had a cold, or the flu......I

> would never insist upon her addressing her delays. WE will Let her

> heal first. Is this truly any different between this and any other

> sickness?

>

> We are kinda lucky that her autism...we know with out a doubt was

> caused by a BIOMEDICAL condition (severly damaged intestines and a

> rageing vicious cycle). Now we have validation that she is

> not " just " autistic with many delays...but a very very very

> physicaly sick child. Like many on this serve.

>

> When she has been on the SCDiet for a little longer and has gone

> into remiision from her damaged intestines/celiac/errosion of the

> intestinal lining, and has gotten her nutritional defeciciencies in

> better check, and the good gut flora in better balance...I will

> reschedule this evaluation.

>

> It truly does not make since to US to take a sick child in for

> therapy either. Many who have healed their guts eating this SCD way

> say that it sometimes take 9 months to a year to heal completely

> just from the PHYSICAL aspect. On our own we will help her to heal

> for now.....first her body...then her delays....

>

> Sincerely, Antoinette and parents of the KiKi-nator!

>

> (2 year old only eating SCDiet 2.5 months...great improvements...but

> a ways to go...healing from SEVERE celiac and injured intestines

> that resulted in Autism and many dev. delays.)

>

[Guest guest]

Antionette, I hope you will reconsider. Therapy is an essential

component in treatment - autism does not just " get better " all by

itself without training of skills. The longer therapy is delayed,

the further Kiki will fall behind her peers, making it very hard to

catch up. The flu is a short-term condition - while intestinal

healing takes years and years, and she may always have the

neurological impairments of autism that need to be adapted for.

Those of us who have been doing biomedical treatment for awhile know

that healing takes time and is usually incomplete - Kiki's healing

may take longer than you realize, and she'll still need therapy

during and after this time. This is precious time when therapy could

be helping her young brain to learn skills. Therapy is most

effective the younger you start it. I say, don't delay - start

getting her the help she needs now!

Suzanne

>

> We descided over the weekend that we more than likely will cancel

> the appointment for her evaluation. I have descided thanks to

> talking to (grandparents/husband and pecan's guidance), that I am

> truly taking a still physicaly SICK child to an evaluation..to be

> completely stressed out by over eight evlauators.....possibly

making

> her auto-immune conditions kick in (ASD/celiac have been

considered

> auto-immune). Stress makes this problem worse, especialy when you

> are still sick and trying to heal your gut that cuased it in the

> first place, the SCD way.

>

> This does not make since. IF she had a cold, or the flu......I

> would never insist upon her addressing her delays. WE will Let her

> heal first. Is this truly any different between this and any

other

> sickness?

>

> We are kinda lucky that her autism...we know with out a doubt was

> caused by a BIOMEDICAL condition (severly damaged intestines and a

> rageing vicious cycle). Now we have validation that she is

> not " just " autistic with many delays...but a very very very

> physicaly sick child. Like many on this serve.

>

> When she has been on the SCDiet for a little longer and has gone

> into remiision from her damaged intestines/celiac/errosion of the

> intestinal lining, and has gotten her nutritional defeciciencies

in

> better check, and the good gut flora in better balance...I will

> reschedule this evaluation.

>

> It truly does not make since to US to take a sick child in for

> therapy either. Many who have healed their guts eating this SCD

way

> say that it sometimes take 9 months to a year to heal completely

> just from the PHYSICAL aspect. On our own we will help her to

heal

> for now.....first her body...then her delays....

>

> Sincerely, Antoinette and parents of the KiKi-nator!

>

> (2 year old only eating SCDiet 2.5 months...great

improvements...but

> a ways to go...healing from SEVERE celiac and injured intestines

> that resulted in Autism and many dev. delays.)

>

[Guest guest]

Dear Antoinette,

Just wanted to chime in from my perspective since I used to have a private

practice evaluating children's neuro-development and helping parents do home

therapy programs to stimulate their children's brain organization and

general development.

It sounds like you've really wrestled with the question of whether or not

to have the evaluation at this time. You seem pretty settled on not having

it now. I think there are both " pros " and " cons " to having the evaluation

now, and it's completely your choice to make.

I've seen children make wonderful neurological progress just by being put

on a good gut-healing program with excellent nutrition. (I shared clients

with a biomedical pediatrician for a while...)

When I evaluated children, I always screened them for " biochemical

problems " like dysbiosis, allergies, salicylate intolerance, etc. When I

thought there were biochemical problems, I always recommended that the

parents get started straightening those problems out before we started a

home therapy program to stimulate development. The biochemical problems

didn't have to be completely solved before therapy could begin, obviously,

but doing a brain-stimulating program with a biochemically sick kid was

" banging our heads [or the child's head!] against a biochemical brick wall " .

Children on good biochemical treatment programs always made better progress

in therapy (and were happier doing therapy) than children who didn't get the

biochemical treatment they needed.

If Kiki was still, in spite of progress on SCD, sitting miserably,

unsmiling, not interacting with people, not playing, not curious and

exploring -- then I'd be recommending that you go ahead with the evaluation

and whatever services you could get for her, to stimulate her development.

But from what you've written on this forum, it sounds like Kiki's a little

" go-getter " , eager to play and interact with people and communicate (by

babbling, even if she doesn't have words yet) now that she is feeling better

and her brain is better nourished and less impaired by gut toxins. I think

you'll find that as her health improves, her natural drive to grow and

develop will bring a good deal of developmental progress, with just the

normal stimulation of family life being enough for now.

When her health is substantially better, you can go ahead with an

evaluation, just as you've said, and get services to help fill in any

developmental gaps that remain.

Just my perspective as a former developmental therapist. Hope this is

helpful.

Kayla

[Guest guest]

Dear Kayla and all for your response and deep concerns,

I only want the best. We are not going the all or nothing

route..that is for certain. But since we are seeing such WONDERFUL

strides in SCDIET alone (just 2.5 short months), we still are very

likely not going to follow through with this evaluation. I talk to

the allison tommorow about our concerns about her phsycial

sickness. Elaine, Dr. Haas and my testimonies say that 6-9 months

out for kids that respond to fanatical adhearance....they are

different children. At this time I trust that she will still have

delays...but thanks to no longer being sick we can adress better. I

truly feel that we would be wasting our time, and stressing her out

beyound belief. It is horrible what happens at this time in her

healing when just ONE doctor examines her. Not to mention eight

evaluators...and they would not be behind glass....they are all

going to be in the same room at the same time.

After I talk to them tommorow I will let you know if we have changed

our minds. Nothing is set in stone. Not even KiKI's brains.

Antoinette

>

> Dear Antoinette,

>

> Just wanted to chime in from my perspective since I used to

have a private

> practice evaluating children's neuro-development and helping

parents do home

> therapy programs to stimulate their children's brain organization

and

> general development.

>

> It sounds like you've really wrestled with the question of

whether or not

> to have the evaluation at this time. You seem pretty settled on

not having

> it now. I think there are both " pros " and " cons " to having the

evaluation

> now, and it's completely your choice to make.

>

> I've seen children make wonderful neurological progress just

by being put

> on a good gut-healing program with excellent nutrition. (I shared

clients

> with a biomedical pediatrician for a while...)

>

> When I evaluated children, I always screened them

for " biochemical

> problems " like dysbiosis, allergies, salicylate intolerance, etc.

When I

> thought there were biochemical problems, I always recommended that

the

> parents get started straightening those problems out before we

started a

> home therapy program to stimulate development. The biochemical

problems

> didn't have to be completely solved before therapy could begin,

obviously,

> but doing a brain-stimulating program with a biochemically sick

kid was

> " banging our heads [or the child's head!] against a biochemical

brick wall " .

> Children on good biochemical treatment programs always made better

progress

> in therapy (and were happier doing therapy) than children who

didn't get the

> biochemical treatment they needed.

>

> If Kiki was still, in spite of progress on SCD, sitting

miserably,

> unsmiling, not interacting with people, not playing, not curious

and

> exploring -- then I'd be recommending that you go ahead with the

evaluation

> and whatever services you could get for her, to stimulate her

development.

> But from what you've written on this forum, it sounds like Kiki's

a little

> " go-getter " , eager to play and interact with people and

communicate (by

> babbling, even if she doesn't have words yet) now that she is

feeling better

> and her brain is better nourished and less impaired by gut

toxins. I think

> you'll find that as her health improves, her natural drive to grow

and

> develop will bring a good deal of developmental progress, with

just the

> normal stimulation of family life being enough for now.

>

> When her health is substantially better, you can go ahead

with an

> evaluation, just as you've said, and get services to help fill in

any

> developmental gaps that remain.

>

> Just my perspective as a former developmental therapist.

Hope this is

> helpful.

>

> Kayla

>

[Guest guest]

I agree with Kayla, there are pros and cons to this issue.

I think, no matter what, canceling until you have a game plan is a good idea.

I would not go through with the evaluation, personally, without an educational

consultant for one. I remember one form I had to sign to allow the therapists

and/or state prescribe prescription medicene as an adjunct to therapy, I was not

willing to sign my rights away. I had no problem with the therapists seeing my

son at his worst. However, since they could not see anything else in my son,

that was another issue entirely.

My son did ABA and other therapies for a short time. It wasn't for him. I

incorporated elements at home of these programs, but my son did poorly in

school/state programs.

I did poorly in them as a child. I hid in them.

Perhaps it is because I am a teacher, or that I had a stroke and had to go

through PT/OT personally (very simple stuff), or I was in remedial programs

myself in school which benefitted me little, but there are many ways to teach

children with therapy or out of the office. I have brought my son into wonderful

therapy centers to have evaluations from time to time. Never am I told something

I do not already know about my son. But there is more than one way to learn and

master a skill. The last time I brought my child into a therapy evaluation

(private), his last developmentally slow areas were cutting with scissors,

riding a bike, and holding a pencil correctly. Within a year, all skills were

learned in this household.

Speech, is by far, where Hunter and Ben are most behind in at this time, but

just a short while ago, we were being told by the therapists there was a good

chance they would NEVER speak, now we have sentences, and I keep reading to

them, playing language games, teaching music lessons, the diet, with enzymes,

and most of 's vitamin/mineral protocol and a few home-made herbal

products, and we are there. We are there. I have seen children with many years

of therapy not make it where we have. And we still have a ways to go, but we're

moving.

So, when speaking of therapy, we make our own. We do not use state/school

services which worked poorly for us by attempting to take away natural curiosity

and natural love of learning (not to mention all the conversations and

statements Hunt had to hear referring to himself in the third person), just

wasn't for us.

But, it is not like the choice between therapy or no therapy, we chose our

own. There is alot of information out there for the taking. For some, specific

therapies may work better. Getting evaluated and seeing what can be offered to

your child is an interesting learning experience, whether you accept services or

not at the end of the process. I still think it is prudent to have a consultant

with you and reschedule when you have researched the process and are better

equipped to make a decision.

Best of luck to you in this endeavor,

Summer

kikijabunce wrote:

We descided over the weekend that we more than likely will cancel

the appointment for her evaluation. I have descided thanks to

talking to (grandparents/husband and pecan's guidance), that I am

truly taking a still physicaly SICK child to an evaluation..to be

completely stressed out by over eight evlauators.....possibly making

her auto-immune conditions kick in (ASD/celiac have been considered

auto-immune). Stress makes this problem worse, especialy when you

are still sick and trying to heal your gut that cuased it in the

first place, the SCD way.

This does not make since. IF she had a cold, or the flu......I

would never insist upon her addressing her delays. WE will Let her

heal first. Is this truly any different between this and any other

sickness?

We are kinda lucky that her autism...we know with out a doubt was

caused by a BIOMEDICAL condition (severly damaged intestines and a

rageing vicious cycle). Now we have validation that she is

not " just " autistic with many delays...but a very very very

physicaly sick child. Like many on this serve.

When she has been on the SCDiet for a little longer and has gone

into remiision from her damaged intestines/celiac/errosion of the

intestinal lining, and has gotten her nutritional defeciciencies in

better check, and the good gut flora in better balance...I will

reschedule this evaluation.

It truly does not make since to US to take a sick child in for

therapy either. Many who have healed their guts eating this SCD way

say that it sometimes take 9 months to a year to heal completely

just from the PHYSICAL aspect. On our own we will help her to heal

for now.....first her body...then her delays....

Sincerely, Antoinette and parents of the KiKi-nator!

(2 year old only eating SCDiet 2.5 months...great improvements...but

a ways to go...healing from SEVERE celiac and injured intestines

that resulted in Autism and many dev. delays.)

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

May I also add that home therapy is also necessary in conjunction with any

school or state based program..the school or state programs in some areas

can offer wonderful help..but they are not to be the sole teaching for your

child.

You will need therapy at home and you should modify and address your own

program with the help of someone trained and able to work with your needs..

With all in place this can offer very well rounded teaching forums..

We also from day one do a min of 2-3 hours of therapy daily with our child (at

home) in addtion to the school program..

We are fortunate to have people trained in Autism here in the school system

and they have offered another route to learning and exposure to different

people...My child loves his school and asks to go..;-)

In the end it's your choice..but I wanted to share my experience.. We use

schools..and at home we do RDI,floortime,sonrise version, and some ABA like

eclectic approach always integrating sensory..this covers all bases... and

works best for us... there is no one way to do this..

Sandy

>

> You said:

>

> Nothing is set in stone. Not even KiKI's brains.

>

> You crack me up! lol

>

> Take time to think and conduct some research, do not rush in afraid,

unprepared. Its the golden carrot syndrome. Perhaps they will be able to help

Kiki, perhaps they will not be able to help her. Both scenarios, they will

dangle

the golden carrot.

>

> Every day is a new learning experience, do not waste any days between

now and when you do go in for evaluations.

>

> Summer

>

>

>

>

> ---------------------------------

> Yahoo! Mail goes everywhere you do. Get it on your phone.

>

>

[Guest guest]

Well today I talk to them on the phone. Left message THURSDAY with

concerns and nobody contacted me back. I can tell that they are

already getting a little frustrated with me. In past I insisted that

they needed the evaluators behind a one way glass....the place where

they evaluate can not do this. They WILL NOT do it in the home.

I had to get letter from DAN! just so that I didn't have to MEET

with a dietician...the darn DAN! doesn't even have his letter

ready. NOBODY LIKES THIS SCDIET they blame the lack of

carbohydrates that she isn't eating on her skinny problem...not

believing that anybody could possibly gain weight eating this way.

The only time that she has gained significiantly has been eating

this way....nobody wants to read the books I have.....so...

I get the brunt of being my

daughters " lawyer " , " therapist " , " dietician " ...the list goes on and

trying to educate a room full of ignorant people about how this is

not " just " neurological....but a BIOMEDICAL condition caused by a

seriously sick and damaged gut.....with a 2 year old that will no

doubt be MELTING DOWN IN A NUCLEAR REACTION! Not a good

scenerio....she even VOMITS WHEN STRESS! That would be a pretty

picture. Plus remember, I am AS myself...so I will be a little

stressed just because of the " social " interaction ( I write better

than I talk)....top this off with a BIG CHERRY and the Social

Workers could be dragged in for neglect or GOD knows what. I may be

projecting all over the place but I do fear that thier ignorance

could back fire. This whole thing sucks.

Regardless she is still too PHYSICALY sick....we will wait and keep

options open...like Summer says I need a better advocate with me

THIS IS FOR CERTAIN!

Yet, it is also obvious we are on the right track, especialy after

reading this WONDERFUL Gut and Psychology Syndrome book that I

inhaled with a yello highlighter. Just a wonderful book. I truly

sometimes wonder if after reading about Dr. Haas's kids, countless

testimonies, and now this GAPS book....if just SCDiet could do the

MAJORITY of the trick??? So far it is...but of course we will not

stop there if she platues or needs more help. We are dedicated and

highly inteligent parents...and will not settle for less.

Thank you all for helpful inputs...I just love this serve!

Antoinette

(mother of 2 year old KiKI with celiac/injured intestines that

resulted in the vicious cycle that caused AUTISM...that six letter

word that we are becoming accustome to)

> >

> > You said:

> >

> > Nothing is set in stone. Not even KiKI's brains.

> >

> > You crack me up! lol

> >

> > Take time to think and conduct some research, do not rush in

afraid,

> unprepared. Its the golden carrot syndrome. Perhaps they will be

able to help

> Kiki, perhaps they will not be able to help her. Both scenarios,

they will dangle

> the golden carrot.

> >

> > Every day is a new learning experience, do not waste any days

between

> now and when you do go in for evaluations.

> >

> > Summer

> >

> >

> >

> >

> > ---------------------------------

> > Yahoo! Mail goes everywhere you do. Get it on your phone.

> >

> >

[Guest guest]

Antoinette,

I see you have some replies and I haven't taken time to read them yet

but I HAVE to write to say please think before you cancel.

I let the relatives all talk me out of speech therapy for my little

boy when he was two. He still ended up needing it badly and I found

out later my insurance would've covered it 100 percent and they

would've came to my home for the therapy under Early Intervention.

When we applied when he was older, he was too old to go under the

early intervention program and nothing was covered but his

evaluation. We ended up having to pay out of pocket for therapy until

we went through the whole red tape of getting him into the public

school system since he wasn't a student and he just got it this year.

Next year when he goes to private K5 it's back to expensive private

therapy (cost us $100 per 45 minutes) I REALLY regret my decision and

that's one of the few things in life I would redo if I had the chance.

Janet, mom to Cody- age 5- SCD since 4-17-06 and doing great!

>

> We descided over the weekend that we more than likely will cancel

> the appointment for her evaluation. I have descided thanks to

> talking to (grandparents/husband and pecan's guidance),>