Re: PDDNOS ?

March 27, 2005

Many people probably have different ideas for you but I think that I can

speak to your concerns over her not interacting with her peers on the

playground. Since I have worked with children who are developmentally delayed

in many

areas as well as socially I can tell you that if your daughter has delays in

several areas it is reasonable to assume that she has not entered into that

interactive stage with her peers. She is in an imatative stage which is what

her time is spent doing during free time. She is learning, not socializing per

se. She will most likely enter into a new stage where her newly encoded

knowledge will present itself in a functional manner while engaging in

interaction. All of the other things, PDDNOS, Apraxia, sensory dysfunctions are

all

barriers as well. My suggestion would be to feed her sensory needs daily and

often while waiting for her doctor. You should see progress.

Developmental Therapist

March 27, 2005

hi manju! my name is charlotte henry from west des moines iowa- mom to josh

4.5 and i just wondered if you are getting any in home services eith speech or

ot through your local area educational services. it might help. i just

wondered. josh has apraxia and sid and his diet is limited plus he has

restricted

interests and behavior problems but he has improved alot with extensive ot and

st, -charlotte

March 27, 2005

Hi!

My name is . I'm in Chicago. You're daughter sounds very much like my

little girl. Today is actually her 4th birthday! We have only been working with

a diagnosis for 5 months, so you should be thankful that you are so ahead of the

game. Officially, Eve's dx is " heavy metal poisoning " . She too exhibits

scattered autistic traits, has hypotonia, didn't crawl, didn't walk until 16

months, poor (but not horrible) eye contact, hand biting, sound sensitivity (but

not light or touch), chronic ear infections and over use of antibiotics, poor

communication skills (exactly like your daughter's...hard time with abstract

thought and questions. Likes to answer only " right " answers...thought she was

severelt apraxic, but only moderately according to her ST), somewhat poor social

skills, has to SQUEEZE everything, and other things. I was the one who pursued

all of this. Unfortunately, no one could put all of this together because she

was " social " . Whatever.

Anyway, we confirmed through her vaccinations that she had DTP shots with

thimerasol. Also did the hair tests, peptide tests, and urinalysis metabolic

tests. All point to mercury poisoning.

I would suggest just going with the autism dx. I fought that so hard, for my own

personal issues, because I just didn't want to accept that was " my " daughter. I

still find myself explaining to other people that she isn't, but the truth is

" close enough " . I have also found that treating her that way opens the doors to

a lot more resources, like this board and the autism treatment board. It also got

me to a DAN! doctor, who good or not, at least helped me to look at her medical

history, do some tests, and find out some really revealing information about

what she is totally deficient in. I would imagine because of our daughter's

similarities that they are somewhat deficient in the same things. Eve has very

little (if not any!) B12, Folic Acid, Molybedum, and Glutathione. She is also

somewhat deficient in zinc, manganese, and vitamin C. We are currently

" prepping " her for chelation (the process of ridding her body of the mercury) by

getting her gut in check (bad yeast and inflammation) and supplementing. (If you

want all details, please contact me offline). Soon, like within a month, we will

begin chelating.

For me, time is of the essence. I have known for years that something just

wasn't " right " with her, but the medical community (who ordered 3 EEGs with

negative results) always told me " she's just a little slow " . Her DAN! doctor

wants to get her body to chelate itself as much as possible, and then do it.

According to Andy ( Cutler, the main man of the autism treatment site!),

there's no reason to wait, and if the body could do it that way, it would. I

have to agree. If the poison is causing the problems, the poison needs to come

out.

We just started the gluten free/cassein free diet last week, and today was no

picnic between it being Easter AND her birthday. Ugh. But, her peptide test was

extraordinarily high, meaning she is very sensitive to these. Luckily, she is a

very good eater. She loves chicken, rice, vegetables, all fruit, and the other

few things she can have! She does love the other stuff, but as long as she is

not exposed to it, she doesn't seem to care.

I understand your sense of urgency. How I wish I had been where you are a year

ago. I would call the Dr's office and see if there are any tests that he will be

ordering that you can complete ahead of time. The peptide test (for gf/cf) needs

to be done when they are still eating those foods. Then you have to wait for the

results. I'd be shocked if she wouldn't benefit from it, but it would be worth

looking into getting the official results ahead of time and started on the diet

and digestive enzymes asap.

Also, start reading as many books as you can, like Children with Starving Brains

by Jacquelyn McCandles, Enzymes for Autism by DeFelice, Unraveling the

Mystery of Autism and PDD by Karyn Seroussi, and Facing Autism by Lynn Hamilton.

They all offer a tremendous amount of information about therapies that exist,

how to follow they diet, etc.

If you are interested at all in the mercury cause, you can visit the web site

www.generationrescue.org . I always assume people know about the mercury, but if

you don't, it was injected into kids in the form of thimerasol (a mercury based

perservative) through many of their vaccinations. The reality is that mercury

poisoning and autism are basically one in the same. After all of the research I

have done, I need no further convincing. But, not everyone does, so you'll have

to decide for yourself.

Anyway, sorry it's long. I just get so excited when I see other people who have

the same thing going on in their child, since it's so hard to explain to anyone

who doesn't live with her. You are definitely right to be concerned, but she

will recover. You are on the right track!

Please contact me if I can help!

in Chicago

[ ] PDDNOS ?

Hi, and the other wonderful moms of the group:

My name is Manju and I am from New Jersey. For the first time I am posting to

this

group. I was actually

searching the net for some information on PDDNOS and APARAXIA when I came

across 's mail in this group.

I am also the mother of a 2yrs. 10 mo. months old girl who has

the diagnosis of HYPOTONIA, APRAXIA and Mild PDDNO. Neuro. Dev.Ped.

used the term mild PDDNOS besause she said my daughter exhibits scattered

Autistic symptoms .

At 8 months of age she was also diagnosed with

hypotonia and because of that all her developmental milestones got

delayed. She sat at 12 mos., crawled

at 16 mos. and walked at 21 mos. All her

neuromuscular and genetic test results are normal

She will soon start the preeschool[sp. education].

She does not have many symptoms of AUTISM but she does exhibit some of

them. Over all , she is very social , cuddly, and affectionate and she also

has very

good eye contact.[ which was poor at one time]

she gives hugs and kisses to her uncles, aunts and cousins , but only when

prompted to do that .

She knows all her alphabets and numbers[1 to 20]

shapes and colors, But she has very poor functional language. she can only

say

single woreds. She has the vocabulary of

45 words. She can use few simple words together

like, What's that, Let's go etc.

Most of her speech is echolalic. She loves country

music and beautifully sings several songs which she sings

with the exact tune but with

unclear words. she also presents with a kind of delayed echolalia.

She is very shy to interact with other kids.

She is ok with kids who are older than

her but with kids her age she is really shy. She loves to watch them play

and she

is also good at imitating them but never joins them while they are playing.

She actually watch them play in the play ground , and when they leave and she

is all

by her self, she would imitate their actions.

She also has many sensory issues and is a very picky

eater . I am very much concerned about her.

Is she a true autistic or her autistiic behavior is the result of hypotona,

aparaxia

and sensory integration dysfunction?

I have taken an appointment from Dr. Neubrander but there is 3 months long

waiting list.

I do not want to delay her treatment for 3 months. But I am not sure how to

get

started. Shall I start with GFCF diet? She is onlly at 20th % ile in terms of

her weight,

Therefore I am not sure what kind of dietery suplements she will need while

on

the diet ?

I also visited kirkman's website but got really confused to see so many

nutritional

products.

Extremely sorry for writing such a lengthy mail .I really could not resist

myself.

Would appreciate to get some guidance in this matter.

Regards

Manju

March 28, 2005

Hey Manju,

Fantastic that you have an appointment with Dr. Neubrander. I am actually a

tad jealous, because I live here in the Netherlands and don't have access to

such wonderful doctors! I do think you're on the right track with your

little girl.

Yes, I suggest strongly that you start with a couple of things, but not too

much, on your own. My daughter does not have autism, but she does have a

number of neurodevelopment problems, and is already benefiting from the

suggestions I have for you below, all of which come from the autism crowd.

We are on our way to doing more and are just now waiting for a great number

of test results to come in. Once that happens, we hope to move forward with

some more treatment, even though we don't have the kind of access to a DAN!

doctor that we would have if we were living in the US.

Many on this list with children who have apraxia, sensory integration

disorder and/or autism have seen their children benefit greatly from

Neubrander's approach, and I'm sure that they will jump in and tell you

their experiences. So whether your daughter has PDD/NOS, apraxia and

sensory integration disorder or just apraxia and sensory integration

disorder, she runs a great chance of progessing very, very far with Dr.

Neubrander. I think you've made the exact right choice, Manju.

So here are my suggestions to you, based on extensive research and lots of

help from others:

1. BOOKS

I suggest that you buy a couple of books, if you don't already have them.

These are the books that I feel are absolutely indispensable for children

with autism, neurodevelopmental disorders, speech disorders, sensory

integration disorder. If there is one book I would say that you absolutely

need to digest, that would be the first one on this list. The next ones

would be The Late Talker for speech issues and The Out-of-Sync Child for the

sensory issues. The others you can add as you like and I'm sure you'll find

even more books of interest out there.

Jaquelyn McCandless M.D., Children with Starving Brains: A Medical Treatment

Guide for Autism Spectrum Disorder, 2nd Edition, update 2004

DeFelice, Enzymes for Autism and other Neurological Conditions

Cave M.D., What Your Doctor May Not Tell You About Childhood

Vaccination

Marilyn Agin, M.D.,

March 28, 2005

Hey ,

Happy birthday to Eve and happy birthing day to you!

It looks like you and I advised some similar items, and I think the

things you included that I left out are fabulous. I haven't read

Seroussi or Hamilton, but I was so impressed with Hamilton's talk on

the DAN! web conference, " Making Wise Biomedical Choices: 10 Things

to Consider " that I ordered her book. She seems to be a very

organized thinker, so her advice in that talk about how to go about

researching, thinking about and implementing your treatment options

was really very helpful. I've got to get around the ordering the

Seroussi book because I hear it's just fantastic. I also think that

Kirby's brand new book is out -- Evidence of Harm -- and

anyone who is intersted in the vaccine connection should make that a

first in terms of reading material goes.

You're exactly right about the peptides test having to be done when

they are not on the GFCF. I didn't even think of that becuase we

haven't done that test yet - not having a DAN! doctor in charge of

our team makes us " weird " in terms of our " protocol. " I guess that

Manju will have to figure out what can be done now, and then decide

if going on GFCF diet is a good idea. If the tests can't be run

until she sees Dr. Neubrander, she could consider putting her

daughter on the diet immediately and then taking her off it a week

or so before the tests -- along with going off any enzymes. The only

problem with that is the probable (inevitable?) regression her

daughter will undergo. But lots of us have gone off all supplements

before testing, and we have then had to deal with regressions, so it

wouldn't be a first. Manju, you'll have to think that one through

and ask around on the lists.

, can I ask you what tests you had run for Eve concerning the

B12, Folic Acid, Vitamin C, Glutathione, Molybdenum, Zinc, and

Magnesium? Were these blood vitamin and mineral panels or urine?

Best to you and your birthday girl,

Theresa

March 28, 2005

Hi Theresa!

Thanks for the well wishes!

We had Eve's metabolic analysis profile done through urine (Great Smokies). I

honestly couldn't tell you how to read all of it, but there is a relativity

scale (of need or likelihood of disorder) that is 0-10. For Amino acid

malabsorbtion she was 5, bacterial dysbiosis 9, yeast/fungal dysbiosis 9,

catecholamine metabolism 9, tryptophan/serotonin 0. (Yes, that's zero...explains

the likelihood of why she is so social and loving). Niacin 5, B12 10, Biotin 4,