Re: Off topic: What does PDD-NOS look like behaviorally

[Guest guest]

Hi Tonya,

I'm not sure how old your daughter is now, or how long you have been

treating her, but there is tremendous hope that she will lead

a " normal " life. You are lucky to have learned so young of her

difficulties, and that you have found this board (and hopefully

others). I have been doing biomed. with my son, who has Asperger's,

for about 9 months. There have been huge changes, and I have so much

hope that he will be recovered some day. Of course it is

challenging, and difficult, and there are ups-n-downs. But, stay the

course. REad, read, read. Seek out a support group. Find other

moms/dads doing biomed. Ask for help and advice.

You'll make it, and so will she.

Good luck. You are in my thoughts.

Dana

>

> Hi all,

> My daughter was dignosed with PDD-NOS before the age of two and I

was

> curious what I can expect from her in the future behaviorally.

>

> Doctors can't seem to give me any prognosis about the future and I

> think that is the hardest part to deal with in addition to the

> information overload and choices to make for her recovery.

>

> I understand no two children on the spectrum look alike but can any

of

> you provide some insight on what to expect as far as gaining

speech,

> learning abilities and cognition.

>

> We are currently GF/CF and we've seen some improvement in cognition

> and aggressive behavior until last week when we added in the B12

shots.

>

> Thanks Tonya

>

[Guest guest]

>

> Hi all,

> My daughter was dignosed with PDD-NOS before the age of two and I was

> curious what I can expect from her in the future behaviorally.

Depends on what her biomedical issues are.

> you provide some insight on what to expect as far as gaining speech,

> learning abilities and cognition.

What my son needed for speech is written here

http://www.danasview.net/issues.htm

> We are currently GF/CF and we've seen some improvement in cognition

> and aggressive behavior until last week when we added in the B12 shots.

Does this mean the B12 shots caused problems? If so, my #3 required a

lower dose of B12, plus addition of folic acid and a good yeast

protocol, in order to tolerate B12.

Dana

[Guest guest]

Hi Tonya,

Our son was dx PDD-NOS last November, he was about 3.5 y/o at the time.

You're right, every child is different, so it's hard to say what you

will see in the future, but I understand your feelings of wanting to be

prepared. When we got our dx, I started researching my tail end off

trying to make sense of it all. The whole process is a journey, that (I

believe) every parent has to go down after the initial dx. BECAUSE

every child is different, you have to take all the info you get and sort

it out and make it right for you, your child, and your family. It is

overwhelming and I, like most of us here I'm sure, have had a few

emotional meltdowns (one was yesterday for me, in fact). But you have

to keep on reading, observing, and fighting to give your child the best

chance at life. Sounds dramatic, I know, but probably not to this

group. These support groups are a HUGE help, I don't know where I'd be

without it. I don't have to put a face to all the people who write in,

but just reading and knowing that there are LOTS of parents out there

going through the same thing is so comforting to me. I believe that the

thousands of hours (literally) that I have put into my research for my

son has played the most important role in us finding the right

treatments for him. We are seeing huge progress and some days I hold my

breath thinking it's all going to disappear. He had his " well-child "

check the other day, and he actually let the Dr. do EVERYTHING, look in

his ears, nose, mouth, touch his belly, everything!! I wanted to cry!!

And only parents in groups like this can understand how HUGE that is!!

I'm sorry if this isn't quite the reply you were looking for, but I felt

in my heart the need to say it, for you and everyone who is new to this

life change!

God Bless everyone!

Susie, mom to Corbin and

[Guest guest]

It is wise the doctor will not give you a prognosis because there is

no way of telling what the future holds. When my son was first

diagnosed, he was termed PDD-NOS and I was told with therapy he would

be normal in two years. A couple months later, he was diagnosed by

someone else and termed low-functioning autism with no promise of the

future. Over the years, he has been upgraded to moderate autism but

not because the low-functioning was wrong but because of the progress

he made. It has now been 5 1/2 years and unlike the first doctor

promised, my son is not normal.

Every child is unique and there is no way for anyone to know how they

will respond to therapy, bio-med or maturity. I have heard DAN

doctors who see only autistic kids year after year say sometimes

those they think will respond well don't make much progress while

others seem hopeless but before long lose their diagnosis. Because

of this, it is irresponsible for any doctor to give false hope or

recovery or to give up on a child they think is unrecoverable. The

first just stretches out the grief and the second can result in not

trying to help a child that could otherwise be helped.

What I can say is this. Anything you do to help your child will take

her one step close to reaching her full potential. What that

potential is we don't know but you have to keep up hope that she can

always do better. Reach for the stars but keep your feet on the

ground. Be prepared for the worst while hoping and striving for the

best.

So what happens as one progresses? I recently heard a DAN doctor say

typically as they emerge from the funk of autism, they tend to go in

one of three directions - ADD with attention issues, tourettes-type

with tics or OCD with compulsive behaviours. I have found for

myself, I have symptoms across the board but just very mild. They

are daily irritants but nothing debilitating.

>

> Hi all,

> My daughter was dignosed with PDD-NOS before the age of two and I

was

> curious what I can expect from her in the future behaviorally.

>

> Doctors can't seem to give me any prognosis about the future and I

> think that is the hardest part to deal with in addition to the

> information overload and choices to make for her recovery.

>

> I understand no two children on the spectrum look alike but can any

of

> you provide some insight on what to expect as far as gaining

speech,

> learning abilities and cognition.

>

> We are currently GF/CF and we've seen some improvement in cognition

> and aggressive behavior until last week when we added in the B12

shots.

>

> Thanks Tonya

>

[Guest guest]

Dana,

How do I determine what her bio medical issues are? Is it all based on

behavior?

I had to back track with the bio stuff.

I discontinued the use of (Dimethylglcine with folinic acid and B12) 1

teaspoon per day and the Methyl B12 shots .06ml every three days.

I think her shot dose is to high.

My friend just started her 44 pound son on B12 shots and the dose was .05ml.

My daughter weighs 32 pounds and her dose is .06mls. Still waiting for a call

from Dan doctor.

I'm not sure if the DMG or the B12 is causing the head banging. Before I

added DMG and B12 she was calm and progressing in therapy. Now she is

regressing.

Could the fact that she is coming down with a head cold and is congested with

a yellowish mucus runny nose have any impact with her behavior?

I added Vitamen C. Mega Bio-C Formula which is buffered vitamin C with Citrus

Bioflavonoids (500 mg's). Is there anything else I can add to help with the

head cold/congestion. I'd like to let this one run it's course instead of

pumping her with a decongestant.

Thanks Tonya

danasview <danasview@...> wrote:

>

> Hi all,

> My daughter was dignosed with PDD-NOS before the age of two and I was

> curious what I can expect from her in the future behaviorally.

Depends on what her biomedical issues are.

> you provide some insight on what to expect as far as gaining speech,

> learning abilities and cognition.

What my son needed for speech is written here

http://www.danasview.net/issues.htm

> We are currently GF/CF and we've seen some improvement in cognition

> and aggressive behavior until last week when we added in the B12 shots.

Does this mean the B12 shots caused problems? If so, my #3 required a

lower dose of B12, plus addition of folic acid and a good yeast

protocol, in order to tolerate B12.

Dana

---------------------------------

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

> Dana,

> How do I determine what her bio medical issues are? Is it all

based on behavior?

Commonly, plus trial and error. I " self-dx " my kids based on

principles of " old fashioned " medicine. Observe the child and

research what that could be.

> I think her shot dose is to high.

This is common. Try oral, you can adjust the dose easier.

> My friend just started her 44 pound son on B12 shots and the dose

was .05ml. My daughter weighs 32 pounds and her dose is .06mls.

Still waiting for a call from Dan doctor.

The letters ml only stand for how much liquid is given. The relevant

information is the *concentration* of B12 per dose. So for example,

..05ml and .06ml might be the same dose, or the .05 might even be more

than the .06. Find out how much B12 is in that dose.

> I'm not sure if the DMG or the B12 is causing the head banging.

Before I added DMG and B12 she was calm and progressing in therapy.

Now she is regressing.

It is good that you are removing them. If/when you start them again,

start one at a time at lower dose, see which one might have been the

problem.

Both tend to increase yeast, so watch for that.

> Could the fact that she is coming down with a head cold and is

congested with a yellowish mucus runny nose have any impact with her

behavior?

Yes, viruses were nasty for my son. Before I addressed his immune

system issues, they would go straight into his brain.

> I added Vitamen C. Mega Bio-C Formula which is buffered vitamin C

with Citrus Bioflavonoids (500 mg's).

This is good. Increase it as much as required, but back down if she

gets diarrhea.

>>Is there anything else I can add to help with the head

cold/congestion. I'd like to let this one run it's course instead of

pumping her with a decongestant.

Olive leaf extract, Virastop enzyme, CLO.

Dana

[Guest guest]

> >

> > Hi all,

> > My daughter was dignosed with PDD-NOS before the age of two and I

> was

> > curious what I can expect from her in the future behaviorally.

> >

> > Doctors can't seem to give me any prognosis about the future and I

> > think that is the hardest part to deal with in addition to the

> > information overload and choices to make for her recovery.

> >

> > I understand no two children on the spectrum look alike but can any

> of

> > you provide some insight on what to expect as far as gaining

> speech,

> > learning abilities and cognition.

> >

> > We are currently GF/CF and we've seen some improvement in cognition

> > and aggressive behavior until last week when we added in the B12

> shots.

> >

> > Thanks Tonya

> >

>

[Guest guest]

I have been doing biomed. with my son, who has

Asperger's, for about 9 months. There have been huge

changes, and I have so much hope that he will be

recovered some day.

> Dana

Can you please tell me, Dana, if biomedical treatments

as we are doing here effects permanent change, or do

the tx need to be re-done periodically? Do the

biochemistry/neurology issues of the ASD population

" get on track " or is this a life-time effort?

Margaret

__________________________________________________

[Guest guest]

Margaret,

I also struggle with worrying about carrying out these extreme

measures for the next 15 years. Hopefully we won't have to be stuck

in the kitchen and chasing our kids down with a multitude of

supplements forever. According to what I learned at a miniDAN!

conference in September, the biochemistry will catch up and return to

a more normalized state. They had such dramatic stories of recovery

it brought tears to your eyes. These doctors gave examples of the

most severely autistic children living normal lives, blending in with

everyone else, and eating regular diets. They did explain that it

takes a long time to reach that point, perhaps several years, but

that with consistent treatment, their bodies will return to a normal,

healthier state.

I cling to this hope through all of the ups and downs. It is a rocky

road, but you will make it. (I hope I will too )! E-mail me off

line if you would like. We haven't reached recovery yet, but I know

that we will someday.

Dana5173@...

>

> I have been doing biomed. with my son, who has

> Asperger's, for about 9 months. There have been huge

> changes, and I have so much hope that he will be

> recovered some day.

> > Dana

>

> Can you please tell me, Dana, if biomedical treatments

> as we are doing here effects permanent change, or do

> the tx need to be re-done periodically? Do the

> biochemistry/neurology issues of the ASD population

> " get on track " or is this a life-time effort?

>

> Margaret

>

>

> __________________________________________________

>

[Guest guest]

> Can you please tell me, Dana,

I am not the same Dana as the person who wrote the initial message.

>> if biomedical treatments

> as we are doing here effects permanent change, or do

> the tx need to be re-done periodically?

My son is completely finished with all biomedical interventions except

for high dose vitamin C. And in fact, if I try to give him any

supplements that he no longer needs, they will cause problems. So

depending on your child's issues, it is possible to have a complete

biomedical recovery.

Do the

> biochemistry/neurology issues of the ASD population

> " get on track " or is this a life-time effort?

Depends on the child's specific issues.

Dana