Please help!!!

[Guest guest]

> This is from land...My daughter , 13.5 years, has

> an emergency appointment with the Pediatric GI tomorrow due to the

> strong possibility of Malabsorption Syndrome (spelling?.)

My son never had this dx, altho he was severely deficient in several

nutrients [and toxic in others], so I suppose it is possible he could

have had this dx at one point.

ALA chelation and quite a bit of supplementation has really helped.

> obviously gut issues that it is a combo of Mercury poisoning and

> vaccines reaction. just had the flu shot this past November

> and just finished her last Hep B shot April 5th. looks like

> the walking dead and that is an understatement. What do I ask this

> doctor tomorrow? I would hope that he brings up the GFCF diet.

My son tolerated no foods. I used HNI enzymes, then rotated foods to

learn which ones he tolerated with the enzymes

http://www.houstonni.com/

Chelation removed all his food issues. Now he can eat anything he

wants, without enzymes.

Dana

[Guest guest]

This site didn't work

martha develbiss <gabydevelbiss@...> wrote:

..

http://www.pixiespl ace.com/trainrid e

My mom made this web page shortly after her brother passed away.

Apparently, someone stumbled onto it and started forwarding it around

and it's received tens of thousands of hits in the last few days.

We tied it into a firstgiving page asking people who want to make a

difference in the lives of others to make a donation to the National

Autism Association.

Please take a moment to forward this link to your friends and help my

Mom raise money for NAA in Aly's honor.

Thanks!

[Guest guest]

the format of this email broke the link for some reason.

so here it is so that people can just click on it:

http://pixiesplace.com/trainride/

[ ] Please help!!!

..

http://www.pixiespl ace.com/trainrid e

My mom made this web page shortly after her brother passed away.

Apparently, someone stumbled onto it and started forwarding it around

and it's received tens of thousands of hits in the last few days.

We tied it into a firstgiving page asking people who want to make a

difference in the lives of others to make a donation to the National

Autism Association.

Please take a moment to forward this link to your friends and help my

Mom raise money for NAA in Aly's honor.

Thanks!

[Guest guest]

That was beautiful thank you so much for sharing

GracieAnn Mama to :

* born 6 weeks early 2/3/99 Healthy

* born 3 weeks early 9/13/01 Turned blue after birth, was placed in

issolett for 5 days ,

developed jaundice at 6 hours of life, was Hospitilized at 16 months old with a

milk protein allergy/

reaction, at age 3 stopped breathing had what Dr's thought were seizures, had an

MRI which

revealed an Arnold chiari malformation of 26mm, No csf flow, Brainstem

compression, He

underwent brain surgery just days after his 4th b-day, They removed part of his

skull and parts of

C1 and C2, Has asthma, Severe GERD, FTT, Severe DD, Low O2 sats, Ng tube,

Multiple food allergies

Low resting heartrate, Mitochondrial disorder undiagnosed,

www.caringbridge.org/visit/aaronczup

*Haley born 2 weeks early 3/25/03 healthy

* my angel born on 8/27/04 with HLHS earned his wings 8/28/04

[ ] Please help!!!

.

http://www.pixiespl ace.com/trainrid e

My mom made this web page shortly after her brother passed away.

Apparently, someone stumbled onto it and started forwarding it around

and it's received tens of thousands of hits in the last few days.

We tied it into a firstgiving page asking people who want to make a

difference in the lives of others to make a donation to the National

Autism Association.

Please take a moment to forward this link to your friends and help my

Mom raise money for NAA in Aly's honor.

Thanks!

[Guest guest]

http://pixiesplace.com/trainride/

try it like this.. without the spaces

rjskimom <rjskimom@...> wrote:

This site didn't work

martha develbiss <gabydevelbiss@...> wrote:

..

http://www.pixiespl ace.com/trainrid e

My mom made this web page shortly after her brother passed away.

Apparently, someone stumbled onto it and started forwarding it around

and it's received tens of thousands of hits in the last few days.

We tied it into a firstgiving page asking people who want to make a

difference in the lives of others to make a donation to the National

Autism Association.

Please take a moment to forward this link to your friends and help my

Mom raise money for NAA in Aly's honor.

Thanks!

[Guest guest]

Hello-

My name is and I'm the mother of a 4 year old daughter

recently has her first speech assessment. I was unable to attend due

to having the flu but my husband was there. After the meeting my

daughter was assessed to have Receptive/Expressive Disorder and

Pragmatic (social)skills. We just received a formal letter from that

meeting and I'm completely floored. Several statements were

blatantly false and my husband was not asked about any said

findings. The first finding was my daughter lack of eye contact.

When my daughter is engaged with you she give plenty of eye contact

without direction. The second statement that she doesn't play with

others. Once again this statement is also false. My daughter plays

with her little brother, the neighborhood children and they children

in her pre-school. The finally statement which absolutely knocked

the wind out of me was when the letter stated that my daughter

displayed 'austistic like' charateristics. What? I mean does the

school district only have 2 catorgories, autistic and not autistic.

I'm not in denial, I truly believe that my daughter has receptive

disorder. That would explain alot of her inablility to pronounce and

speak clearly. It would also explain the echolalia. But the

echolalia is not often and she often will answer the question at

hand.

My question is, Now what do we do? I feel like I should find an

outside source, other that the school district, to get another

evaluation. Does anyone know of a good speech therapist in Southern

California? or advocate?

Sorry so long but thank you all in advance for any help that you may

have for me.

[Guest guest]

#1) Breathe

#2) While I believe there is autism out there and have been studying

it (as a hobby...some folks like the history channel, I like medical

puzzles) for 14 years. I do believe it is very easy for a child to

not get properly diagnosed at a dr. for a number of reasons (usually

insurance and the fact that the docs are cautiously optimistic and

the disorder is complex and they want to get it right)and for a child

to be overdiagnosed at school for one reason: Money. Special needs

kids bring money into the school. There is a second reason though

that is probably more likely...it is an assessment, a moment in time.

So, what do you do? Let's break it all down:

1) Lack of eye contact: She may have had that with the evaluators.

Not every four year old who looks perfect stranger adults in the eye.

2) Not playing with others: well, playing with her little brother, a

known entity, is different from socializing. Still, again, even in

today's age, not every child should be expected to be on center stage

and jump in there. Were these new kids? My son was one only to play

with his sister and was skiddish around outsiders but now enjoys

them. He is not yet 3 and that is when I believe they are supposed to

play togeher. He looks right at the adults he then shies away from

and that shying away thing is now fading. My son had ASD markers and

was apraxic-like but not full blown apraxic. Turns out he had a milk

allergy. Malabsorption of A and D messed with his eyes, and still he

had eye contact. Got better with the glasses we did not know he

needed despite asking the dr. He is not yet three so I think paralell

play is still ok but he now plays actively with kids beyond his

sister since we removed milk and allergins from his diet, created

variety and whole foods and his belly healed.

3) A receptive delay is a bigger deal than an expressive. I found

that out when my son, who was not talking at age two last year, had a

37 receptive language score meaning that he really could not

understand us. Tht floored me but was true. Well, guess

what...despite his perfect hearing per tests stomach acids were

shooting up into his ear canal and cutiing his hearing out

intermittently due to allergy. He understands it all now and the many

who thought he was mentally retarded, including that very therapist

who assessed him are rejoicing with me. Doctors are puzzled and my

child is smiling. Still, we have a road ahead as he is talking but

from all the not hearing we can't always get it. We have to do the

Listening Program, address other allergins and heal his gut so things

do not go the wrong way. None of this was obvious and I swear to you

I asked around and asked specifically about autism. Just ask my

husband...it annoyed hm to no end until we went to a

neurodevelopmental pediatrician who started asking about things that

were irrelevant and was leaning toward autism when she was testing

him in a setting with no other kids and maybe 5 toys. It was a riot.

It was in NY, at Columbia University (not Dr. Agin) and I still ask

myself if that woman was an imposter.

Echolicia is her grabbing on to what she knows...a way for her to

learn and the beginning of language. Do not fear it but ask yourself

why she has to do that? Alzheimers patients do that and they are

oftenhelped by fish oil and the vitamins talked about here...likely

due to gut involvement. The goal of course is to find out why a

developing brain mirrors activities of an aging brain and stop it

since, as I understand it, children's bodies, if suffering and the

cause is found early enough, can be healed well. So, it would seem

from my reading you have time on your side but the time to act is now.

This is not my child and not my business but if I were you I would do

the following:

Sit down and write a thorough history.

unexplained fevers, tylenol use, colick, any meds in pregnancy?

red ears? red hands and feet?

Antibiotics?

Then take a look at the book " Fighting for Tony " It is one cent on

amazon. It is the best penny you will ever spend. If I ever get my

copy back I'll mail it to you.

Then see your doctor.

Honestly, look into what ails your child first and then deal with the

mislabeling. Unless someone is picking on her at this point the

therapy will likely help her and when she is physically healed she

will have a greater touchstone for all age appropriate skills from

the therapy and catch up faster in the right setting.

I am not a dr., I don't know for sure what is up with your kid, but I

am so a mom who has been there and just 6 months ago at that and I

truly believe there is hope for every kid, particularly a child like

you describe with a little brother to help her. My daughter has

taught my son more than me or any therapist and has been a big part

of his recovery if for no other reason than she started speaking for

him and he realized she would boss him around if he did not try to

communicate. That is when we knew the receptive delay is over.

You will get the mislabel off her but I'd deal with that last.

Just my opinion. Hang tough, feel supported, and reschedule the next

eval if you can't make it...husbands never ask what you want...it is

a male/female thing. I would have him go with you as he can observe

the differences in evals and help you greatly. As Colleen says, there

is a reason you guys are her parents. You can pull her out of this

delay, regardless of its name.

Go get em . It can be overwhelming but we are here!

[Guest guest]

Our school bases the special needs program on autism. Is it any surprise?

Autism effect 1 out of 98 boys. Autism is very well known. We use a lot of the

assistive things like picture exchange communication systems, low staff- child

ratio. Charlotte

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