Re: New member: My niece may have

[Guest guest]

,

Our daughter had feeding issues from birth and was unusually temperamental.

This seemed to increase with time and by the time she was 6 months old, she

began to show delays.

Hope this helps you.

----- Original Message -----

From: krinzgal <fanmail@...>

My question, and I apologize for my long-windedness, is: Does anyone

on this list have an INFANT that developed normally for the first

four or five months then proceeded to exhibit developmental delay,

hypotonia, and other symptoms of ?

[Guest guest]

--- In , " krinzgal <fanmail@k...> " <fanmail@k...>

wrote:

> My question, and I apologize for my long-windedness, is: Does

anyone

> on this list have an INFANT that developed normally for the first

> four or five months then proceeded to exhibit developmental delay,

> hypotonia, and other symptoms of ? I have read the 88 pages of

> Dr. Goldberg's latest presentation, and he indicates that he

is

> seeing some children demonstrating this syndrome in INFANCY. My

> niece is now demonstrating some very disturbing self-distructive

> behavior, and we are seeking some answers FAST.

,

Our son Garrett has been a Dr. Goldberg patient for the past few

months. Garrett turned two this past week. Garrett was still

gaining verbal and social skills around 14 months before his major

decline began, BUT I believe that there were some indications

very early on. For the 1st seven months or so he hit all milestones,

including sitting up without support. He was still hitting or

surpassing some milestones (mainly verbal) at around 14 months.

However, at around seven months he started to fall behind

physically. He didn't crawl until 12 months, 30 days. Some people

say their children were similar to Garrett, and that they simply

scooted, rolled etc., but Garrett never once moved from one place to

another before the day he crawled. Some other early signs of

included eczema and frequent ear infections that started around six

months -- just the time he started to eat solid food. He didn't pull

himself up in his bed to a sitting position until he was roughly 15

months old. He started to be able to pull himself up to furniture

and cruise at ROUGHLY the same time (I don't have his baby book in

front of me), but didn't start walking without support until he was

22 months old. ***His 1st steps began 5 days after starting

Valtrex.***)

Some might say that hypotonia was the reason for his physical

delays. While this may be true to some extent, I believe his

hypotonia may have been the result of his physical lethargy that was

caused primarily by motor planning and sensory integration issues.

He was pretty strong at birth and didn't experience the " floppy baby "

symptoms you'd expect from a kid born hypotonic.

Dr. Goldberg has an interesting post in the " Ask Dr. Goldberg "

arhchive about how neurologists never would have diagnosed autism,

pre-autism-hysteria, about a kids with physical delays. They would

have thought it was some sort of a disease process and worked toward

treatine it.

Orange County, CA

>

> If anyone has this particular scenario with their child, would you

> please email me at twedts@b...? Or at

> fanmail@k... Thank you so very much. We are desperate

> for information ASAP!

>

> Grateful for this message board and the Web site!!

> ~~

[Guest guest]

,

My son was also a very angry infant and had a huge intolerance to

cow's milk (and other things, tho I didn't know it at the time) from birth. He

had horrible colic and sensory issues from birth, too- the sensory issues have

improved greatly(thank God) I literally dreaded leaving the house for the first

3 mos. of his life- he was a screaming machine!

Becky

Re: New member: My niece may have

,

Our daughter had feeding issues from birth and was unusually temperamental.

This seemed to increase with time and by the time she was 6 months old, she

began to show delays.

Hope this helps you.

----- Original Message -----

From: krinzgal <fanmail@...>

My question, and I apologize for my long-windedness, is: Does anyone

on this list have an INFANT that developed normally for the first

four or five months then proceeded to exhibit developmental delay,

hypotonia, and other symptoms of ?

[Guest guest]

--- In , " The AVJueschkes " <meand.mygirls4@v...>

wrote:

> ,

>

> Our daughter had feeding issues from birth and was unusually

temperamental. This seemed to increase with time and by the time she

was 6 months old, she began to show delays.

>

> Hope this helps you. >

,

Thank you for your reply. And thank you to the other parents here who

emailed me at fanmail@... about appearing in

infancy. Your information is priceless! How is your child doing

now, ?

Is there any place where every conceivable symptom of is

listed? My sister-in-law and I are finding more and more symptoms

that fit here, like gritting teeth, sensitivity to noises, rashes,

red cheeks, etc. So many things that have appeared over time. Is

there a list somewhere of all these things to look for when

considering your child may have ?

Also, as far as yeast infections relative to : are they just

intestinal or can they be vaginal as well, or both? Has anyone's

child bitten his or her hands repeatedly? This is a new behavior for

my niece and is very disturbing.

Has anyone here ever had the tentative diagnosis of Rett's? What

ultimately ruled it out? If my niece has had genetic studies of the

X chromosome that were determined to be normal, can we safely say

it's not Rett's?

Again, thanks to anyone who has something to offer. I'll check here

for any posts or you can email me. Thank you!!

~~

[Guest guest]

I'm not completely certain about your Retts question but I can tell

you that we had specific testing for Retts syndrome. I don't think

that general genetic testing rules it out. Terri

> > ,

> >

> > Our daughter had feeding issues from birth and was unusually

> temperamental. This seemed to increase with time and by the time

she

> was 6 months old, she began to show delays.

> >

> > Hope this helps you. >

>

> ,

>

> Thank you for your reply. And thank you to the other parents here

who

> emailed me at fanmail@k... about appearing in

> infancy. Your information is priceless! How is your child doing

> now, ?

>

> Is there any place where every conceivable symptom of is

> listed? My sister-in-law and I are finding more and more symptoms

> that fit here, like gritting teeth, sensitivity to noises, rashes,

> red cheeks, etc. So many things that have appeared over time. Is

> there a list somewhere of all these things to look for when

> considering your child may have ?

>

> Also, as far as yeast infections relative to : are they just

> intestinal or can they be vaginal as well, or both? Has anyone's

> child bitten his or her hands repeatedly? This is a new behavior

for

> my niece and is very disturbing.

>

> Has anyone here ever had the tentative diagnosis of Rett's? What

> ultimately ruled it out? If my niece has had genetic studies of

the

> X chromosome that were determined to be normal, can we safely say

> it's not Rett's?

>

> Again, thanks to anyone who has something to offer. I'll check

here

> for any posts or you can email me. Thank you!!

>

> ~~

[Guest guest]

----- Original Message -----

From: krinzgal <fanmail@...>

How is your child doing

now, ?

====================

She's doing very well. She's 4 1/2 now and is considered the most social

autistic child her psychologists have ever seen. Her speech is progressing

nicely and she frequently comes up with appropriate spontaneous language. We're

very hopeful.

You asked if anyone's child had a problem with biting their hands. Our

daughter had this problem, it's long gone now.

[Guest guest]

I can't answer the Rett Syndrome question either, but on " Rettnet "

<rettnet@...> they may be able to offer some help.

Jon.

New member: My niece may have

I have been digesting as much info as possible from this list. It's

more than I can handle at once, so I'm posting in an effort to help

narrow my search here.

Two years ago, I wrote a freelance article for a Gannett newspaper

about the " new " form of autism. At that time, it was most often

referred to as " autistic spectrum disorder. "

I now have a 26-month-old niece who demonstrates most of the

diagnostic criteria. Her pediatricians and pediatric neurologists

have repeatedly reassured her parents that she is " not autistic, " but

they have NEVER indicated that anything like an autistic spectrum

disorder or neuroimmune dysfunction syndrome exists.

This child's mother, my sister-in-law, has recently requested the new

patient packet for securing an appointment with Dr. Goldberg.

My question, and I apologize for my long-windedness, is: Does anyone

on this list have an INFANT that developed normally for the first

four or five months then proceeded to exhibit developmental delay,

hypotonia, and other symptoms of ? I have read the 88 pages of

Dr. Goldberg's latest presentation, and he indicates that he is

seeing some children demonstrating this syndrome in INFANCY. My

niece is now demonstrating some very disturbing self-distructive

behavior, and we are seeking some answers FAST.

If anyone has this particular scenario with their child, would you

please email me at twedts@...? Or at

fanmail@.... Thank you so very much. We are desperate

for information ASAP!

Grateful for this message board and the Web site!!

~~

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