Re: Question for /very long

[Guest guest]

We just found out our dd who just turned 8 is PDD. , and she too has other

issues.

Thanks for the post it was great, knowing one is not alone. I feel hubby has

some issues, maybe asperger or High Funcitoning autism.He is extremely

intelligent, but not too social.

Migdalia (DEE)

[Guest guest]

Kim,

I know this post wasn't meant for me but... I wanted you to know

that you are not alone and you surely did not " miss " anything...

I have a son who wasn't actually diagnosed with his Aspbergers until

he was in 2nd grade (and getting that done did not come easy!?!) And

to top it off - I just now found out my daughter who is 9 is PDD/NOS.

Believe me, it wasn't for " missing " anything - She was a hard one to

figure out - (especially because in the back of our minds we always

had to wonder if she was " learning some things from big brother!? "

It depends alot where you are... and what people (drs. & teachers)

know - My school system has come a long long way - and I used to have

to explain ASD all the time.

We also didn't have any immunination problems, etc... What I have

found in my research is that these " differences " can sometimes run in

families... We now know my husband is ASD and there are many varying

degrees throughout both of our family trees.

Enzyme deficiency can definitely be a genetic factor, and it makes an

incredible amount of a sense in our case...

I'm new to this group and I am so grateful for finding this group! I

am learning so much here... We (my family) are just starting our 3rd

week on enzymes...

Joanna in Michigan

wrote:

> : First, I wanted to tell you that I enjoy this list very

much

> and have learned SO much. I also read/contribute to other lists

> which pertain to other issues, and this has been a Godsend as we

are

> just starting out on the biomedical interventions. I still have

> more questions than answers, and I hope that someday, even I can

> answer people's questions.

>

> I particularly liked reading your story of you and your 2 sons.

> Very interesting. Because of reading your story, I would like to

> ask you some questions. We started No-fenol last night. From what

> I have read, I should give this enzyme slowly, and build up to the

> correct dosage and expect to wait for 3 weeks until he has adjusted

> to it. Then, I can add AFP peptizyde, similarly...start slowly,

and

> wait for about 3-4 weeks adjustment period before starting the next

> one. Please let me know if this is true.

>

> Then, I just needed to share my total confusion about this whole

ASD

> thing, hoping that you may have some insight. From your story, you

> sure have seen alot. First, my son is 4-1/2 years old and

> is in the process of being diagnosed with possible PDD/NOS or

> Aspergers. Isn't this awful late to be diagnosed? Everyone else

> seems to be diagnosed around ages 2-3. Did we miss something?

>

> He did not have all of those typical mercury overload symptoms. He

> had no vaccine reactions, no allergies, no food issues, great eye

> contact, was social, smiling, no colic, no vomiting, etc. Then, we

> noticed he wasn't speaking around age 18 months to 24 months, so we

> had him tested. They said that he had verbal apraxia and to seek

> out speech and OT therapy. I asked if he was PDD and they

> said " absolutely not " . OK, so we got him his therapy. Along the

> way, I found out that EFA's could help speech, so we gave him his

> EFA's which have helped tremendously. At age 3, he was tested

> again. They said he was a wonderful little boy who was now

speaking

> in 2 word phrases. Still, they said that he was not PDD, but did

> suggest putting him into our district's special ed pre-school

> program for speech and fine motor delay. So, again, we did as they

> suggested.

>

> He did well with the school, the teachers loved him, his therapists

> said that he was doing so well, that they thought he would not

> qualify for services next year and he would be able to go to

> mainstream kindergarten when he turned 5 years old. This was just

6

> months ago when they told me this. I was elated!

>

> That is when the bottom fell out, so to speak. This past spring,

he

> started lining up toys. He definitely limited his diet to

> Mcs, pizza, bagels, spaghetti, ice-cream, bologna...He wanted

> to only watch movies, not go out of the house, not play with other

> kids. He did play with his 2 older sisters ...and his sisters

> friends, but not his peers. Then he started the very annoying

habit

> of scripting his videos. To date, this behavior has NOT stopped,

> and I am praying constantly that enzymes may help this behavior.

>

> I took to see a neurological pediatrician last month, and

> she could not give a definite diagnosis, but she did say atypical

> behavior, possibly aspergers or high functioning PDD/NOS. She

> referred us to a local childrens hospital for further evaluation.

>

> In the meantime, I started reading this list and I started the GFCF

> diet. Very hard diet! He is currently CF and a reduced GF, but I

> am having a hard time finding foods that he will eat. And, of

> course, we just started enzymes last night.

>

> What I wanted to know is....how could we have missed this all

> along? He was doing so well, could he have had subtle signs all

> this time that we missed and the symptoms are just now exploding?

> Are there any other kids on the spectrum that did not have bad

> vaccine reactions? That just really started showing autistic

> behaviors later? And, why is it that I never hear of anyone

else's

> kids having this scripting problem? IT is SO annoying!

>

> I apologize for the long story, I am so confused...any insight

would

> be fabulous.

>

> Thanks. Kim in Gurnee, Illinois

[Guest guest]

Welcome to the list! yes, I also think this list and 's book

are great! You'll learn a lot here!

In case you haven't already be sure to get your child's eyes tested

as eyesite problems make everything else worse. We then went on to

vision therapy (huge progress here) and NDD (only been doing a month

but we expect this to be the big key for my daughter). Here's a

couple websites on these for when you might want to look them up-I

have many other sites as well.

http://www.handle.org/

http://www.pavevision.org/

http://www.minnesotavisiontherapy.com/

http://www.ndt-ireland.com/ndt_ireland_inpp_worldwide.htm

You are not late at all. Sounds like you were getting a lot of early

intervention. The diagnosis is not important. Finding the right

services for your child is.

Best Wishes!

Becky

> : First, I wanted to tell you that I enjoy this list very

much

> and have learned SO much. I also read/contribute to other lists

> which pertain to other issues, and this has been a Godsend as we

are

> just starting out on the biomedical interventions. I still have

> more questions than answers, and I hope that someday, even I can

> answer people's questions.

>

> I particularly liked reading your story of you and your 2 sons.

> Very interesting. Because of reading your story, I would like to

> ask you some questions. We started No-fenol last night. From what

> I have read, I should give this enzyme slowly, and build up to the

> correct dosage and expect to wait for 3 weeks until he has adjusted

> to it. Then, I can add AFP peptizyde, similarly...start slowly,

and

> wait for about 3-4 weeks adjustment period before starting the next

> one. Please let me know if this is true.

>

> Then, I just needed to share my total confusion about this whole

ASD

> thing, hoping that you may have some insight. From your story, you

> sure have seen alot. First, my son is 4-1/2 years old and

> is in the process of being diagnosed with possible PDD/NOS or

> Aspergers. Isn't this awful late to be diagnosed? Everyone else

> seems to be diagnosed around ages 2-3. Did we miss something?

>

> He did not have all of those typical mercury overload symptoms. He

> had no vaccine reactions, no allergies, no food issues, great eye

> contact, was social, smiling, no colic, no vomiting, etc. Then, we

> noticed he wasn't speaking around age 18 months to 24 months, so we

> had him tested. They said that he had verbal apraxia and to seek

> out speech and OT therapy. I asked if he was PDD and they

> said " absolutely not " . OK, so we got him his therapy. Along the

> way, I found out that EFA's could help speech, so we gave him his

> EFA's which have helped tremendously. At age 3, he was tested

> again. They said he was a wonderful little boy who was now

speaking

> in 2 word phrases. Still, they said that he was not PDD, but did

> suggest putting him into our district's special ed pre-school

> program for speech and fine motor delay. So, again, we did as they

> suggested.

>

> He did well with the school, the teachers loved him, his therapists

> said that he was doing so well, that they thought he would not

> qualify for services next year and he would be able to go to

> mainstream kindergarten when he turned 5 years old. This was just

6

> months ago when they told me this. I was elated!

>

> That is when the bottom fell out, so to speak. This past spring,

he

> started lining up toys. He definitely limited his diet to

> Mcs, pizza, bagels, spaghetti, ice-cream, bologna...He wanted

> to only watch movies, not go out of the house, not play with other

> kids. He did play with his 2 older sisters ...and his sisters

> friends, but not his peers. Then he started the very annoying

habit

> of scripting his videos. To date, this behavior has NOT stopped,

> and I am praying constantly that enzymes may help this behavior.

>

> I took to see a neurological pediatrician last month, and

> she could not give a definite diagnosis, but she did say atypical

> behavior, possibly aspergers or high functioning PDD/NOS. She

> referred us to a local childrens hospital for further evaluation.

>

> In the meantime, I started reading this list and I started the GFCF

> diet. Very hard diet! He is currently CF and a reduced GF, but I

> am having a hard time finding foods that he will eat. And, of

> course, we just started enzymes last night.

>

> What I wanted to know is....how could we have missed this all

> along? He was doing so well, could he have had subtle signs all

> this time that we missed and the symptoms are just now exploding?

> Are there any other kids on the spectrum that did not have bad

> vaccine reactions? That just really started showing autistic

> behaviors later? And, why is it that I never hear of anyone

else's

> kids having this scripting problem? IT is SO annoying!

>

> I apologize for the long story, I am so confused...any insight

would

> be fabulous.

>

> Thanks. Kim in Gurnee, Illinois

[Guest guest]

> That is when the bottom fell out, so to speak. This past spring,

Did anything new happen? Like did he receive booster vaccinations,

have a strep illness, something like that?

he

> started lining up toys.

For my son, this is viral.

>>Then he started the very annoying habit

> of scripting his videos. To date, this behavior has NOT stopped,

For my son, this was helped by B12 and anti-virals.

Dana