Re: Does this sound like any of your children?

[Guest guest]

Rose - did your son regress or did he meet other milestones except language?

[Guest guest]

You mentioned 'if other illnesses have been ruled out' it is probably .

What other illnesses are you referring to? I forgot to mention that my son

didn't regress - he met the physical milestones, but not the social/language

ones. Also - how are your boys doing now? How long have you been with Dr. G?

Thank you so much for your explanation - that makes sense. Now I have to

figure out how to pay for all of those tests - my insurance won't cover anything

associated with PDD. I'm also worried about how in the world am I going to

get any medications in him. He is also very limited in what he eats - the only

thing I can put meds in is juice and if he tastes it, he won't drink it.

His gag reflex is very powerful. Is it possible to get things compounded to

be used transdermally?

T

[Guest guest]

Hi -

Yes, a 'healthy' child can and does still very much

fit the profile. I'll explain a bit. However,

when the learning disabilities are present, and

especially if your child initially developed normally

and then either regressed or stopped progressing in a

normal fashion, then there IS a disease process going

on.

My first child fit the healthy profile (except

prolonged colic for no found reason) like yours. He

only had one ear infection by the age of two - however

it took tubes to eliminate it (because they didn't

really treat it aggressively enough - Dr G would have

gotten rid of it without the surgery). He likewise

has seasonal allergies but they weren't so obvious in

the first couple of years. His coloring was fine, too

- beautiful bright-eyed child early on. My son is on

the thin side unlike yours, but that doesn't have to

be related - his sensory issues have always caused

feeding problems. By all typical pediatric standards,

my son was considered healthy. (My second son

appeared healthy as well but had severe GI yeast

infection and prolonged anemia).

A 'healthy' child can still have a dysfunctional

immune system. In fact, there are some parents whose

child was 'never' sick with even a cold. But if an

immune system is overactive (and this can vary as to

what parts are overactive and probably results in the

various subclasses), then of course it may be knocking

out any virus before symptoms are ever showing up.

The immune system can be in a constant " turned on " or

activated state, and in this state, it is continuously

producing inflammatory immune cells that can build up

(not very accurate way but more descriptive) in the

brain, cause sublte neuro-inflammation, reduce blood

flow to parts of the brain, resulting in difficulty

with normal development and behaviors. As you've

probably read, this inflammation has been confirmed by

Jons Hopkins, and the findings were consistent with

what was hypothesized by .

In a child like this, you may still find high

antibodies to viruses that we all get, or high

antibody reactions to vaccines, perhaps low iron

(although sometimes not low enough to show up in a CBC

but found thru an iron panel checking Ferriten)...

The best way to find this out is to have the lab

workup. Of course, the picture usually manifests in a

collection of results that may not be significant to

someone not experienced in the immune dysfunction and

" shifts " that occur, so you could conceivably get " all

normal " results and yet still be showing up. You

may see very mildly elevated liver function that would

not be a concern on it's own but is still a marker for

something, for example chronic viral stress.

Dr Goldberg could explain this much better, but if

your child is labeled PDD and other illnesses have

been ruled out, then this is most likely .

--- seattlejg <Seattlejg@...> wrote:

> Hi! I have been reading the emails for this group

> for quite some

> time, but I haven't posted anything yet. I have

> learned that if you

> wait long enough, every topic will eventually come

> up! My son is

> turning 4 this weekend and he was diagnosed PDD-NOS

> at 2. The DAN

> protocol has always made me nervous and makes

> much more sense to

> me. It seems, however, that most of the children

> are described

> differently from my little boy.

>

> My son is healthy with the exception of seasonal

> allergies, which are

> controlled with zyrtec. He has only had 1 ear

> infection and

> antibiotic that one time. He sleeps well - 6:30 pm

> - 7:00 am and is

> built like a tank. He is just shy of 50lbs, but

> isn't fat at all. (so

> growing isn't a problem). He never gets diarrhea or

> diaper rash and

> his coloring is good. He is very smart - he is

> reading and spelling

> some, but still doesn't understand the purpose of

> language and only

> talks during imitation-type drills, and then still

> only says very

> limited initial sounds.

>

> If there is anyone out there who has an autistic

> child who appears

> healthy, but has been helpful, it would mean

> everything to hear

> from you. I am getting more depressed as we

> approach his birthday and

> could really use some encouragement. Thank you very

> much!

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Just to let you know, my son is 13 and has only had one ear infection and was

diagnosed PDD at 2 1/2, but is now obviously autistic (high functioning, but

with a moderate amount of language). My son doesn't even have seasonal

allergies.

Good Luck~~

Rose

Does this sound like any of your children?

>

>Hi! I have been reading the emails for this group for quite some

>time, but I haven't posted anything yet. I have learned that if you

>wait long enough, every topic will eventually come up! My son is

>turning 4 this weekend and he was diagnosed PDD-NOS at 2. The DAN

>protocol has always made me nervous and makes much more sense to

>me. It seems, however, that most of the children are described

>differently from my little boy.

>

>My son is healthy with the exception of seasonal allergies, which are

>controlled with zyrtec. He has only had 1 ear infection and

>antibiotic that one time. He sleeps well - 6:30 pm - 7:00 am and is

>built like a tank. He is just shy of 50lbs, but isn't fat at all. (so

>growing isn't a problem). He never gets diarrhea or diaper rash and

>his coloring is good. He is very smart - he is reading and spelling

>some, but still doesn't understand the purpose of language and only

>talks during imitation-type drills, and then still only says very

>limited initial sounds.

>

>If there is anyone out there who has an autistic child who appears

>healthy, but has been helpful, it would mean everything to hear

>from you. I am getting more depressed as we approach his birthday and

>could really use some encouragement. Thank you very much!

>

>

>

>

>

>

>

>

>Responsibility for the content of this message lies strictly with

>the original author(s), and is not necessarily endorsed by or the

>opinion of the Research Institute and/or the Parent Coalition.

>

>

[Guest guest]

, The trick that a condition often plays is that a child may

appear healthy with no current or few typical childhood infections, yet the

immune system is fighting something that is either not there or in the body

that is not active or infectious.

The NIDs bloodwork list is on the websites...take a look at it and see if

you have run any of these tests in the past ... www.nids.net

www.neuroimmunedr.com

Best wishes

Does this sound like any of your children?

Hi! I have been reading the emails for this group for quite some

time, but I haven't posted anything yet. I have learned that if you

wait long enough, every topic will eventually come up! My son is

turning 4 this weekend and he was diagnosed PDD-NOS at 2. The DAN

protocol has always made me nervous and makes much more sense to

me. It seems, however, that most of the children are described

differently from my little boy.

My son is healthy with the exception of seasonal allergies, which are

controlled with zyrtec. He has only had 1 ear infection and

antibiotic that one time. He sleeps well - 6:30 pm - 7:00 am and is

built like a tank. He is just shy of 50lbs, but isn't fat at all. (so

growing isn't a problem). He never gets diarrhea or diaper rash and

his coloring is good. He is very smart - he is reading and spelling

some, but still doesn't understand the purpose of language and only

talks during imitation-type drills, and then still only says very

limited initial sounds.

If there is anyone out there who has an autistic child who appears

healthy, but has been helpful, it would mean everything to hear

from you. I am getting more depressed as we approach his birthday and

could really use some encouragement. Thank you very much!

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

Hi -

Other illnesses - I don't have any in particular, but

some genetic disorders have developmental problems -

but these are normally picked up during diagnosis.

My son did not regress, either. He met all initial

milestones on time, technically even in his speech,

but his speech was echolalia, although as he was

learning to speak and naming things, he had an

excellent vocabulary, so it was not noticed by a

professional until I had already realized that it was

echolalia and pointed it out. Also, the social

development was slightly different - eye contact was a

problem, no pointing/shared attention, no coming to

you to ask for something, etc.

My boys are doing pretty good, now. My youngest is

still normally developing, but I have subtle feelings

that something is not all ok - but I'm trying to

target what is discipline, what is behavioral, etc.

His eyes don't look as bright as I'd like to see right

now and his interest is not as good as I want, and I

do think this is related ... but he is a happy

social little boy who makes friends instantly.

My oldest son has great interaction with adults and

his brother, but still seems spacey around kids at

school. He appears to have a lot of apathy at school

and doesn't seek out interaction with his peers to the

degree that typical children do. He does, however,

chat with kids... but they tend to have to talk to him

first, then he'll have a conversation that you

wouldn't find too much fault with. He's only six, so

I worry that Asperger-type symptoms may become more

prominent later, but if I can continue to pursue

(when finances allow again), follow the diet and keep

them well, work maybe with RDI or something, I don't

have any reason to believe that this child can still

meet goals closer to a typical child - but I have to

find those pieces and restructure our lives better to

involve more therapy and tighter discipline. But no

one would diagnose him as autistic. Just ...

apathetic. I see more, but professionals would NEVER

give him that label now.

We were with Dr G for 2 1/2 years until my financial

situation couldn't handle it any more and we had to

stop... but we were already nearing a point that we

felt like things were stabilized, labs were looking

good, etc. And while I was terrified for a while that

they would regress, I have not seen that happen. What

I have seen was that in the last two years when I had

a severe PANDAS episode, I lost control of discipline

and routine, and this is showing up in my boys'

behaviors and habits, so now my focus is trying to

view my children as " well " but our lifestyle as

seriously wanting, and trying to establish better

habits and re-teaching. This is very hard for me,

being myself, but I am definitely making

progress. I won't know for a year how much my son

needs SSRI-type meds until I've structured life into a

way that wakes him up more to his surroundings.

We never would have made it so far without Dr

Goldberg. My son made so many developments naturally

- with no therapies - after being on the protocol. I

still think things (discipline, behavior, etc) would

be easier ON the meds than off, but I can't say for

sure. Actually, I think they would do better if I

were the one on the protocol rather than them, at this

point. I think they would respond better if I were

more alert and consistent.

As far as getting labs, you are NOT doing these labs

for PDD. You are doing them for immune dysfunction

and cognitive dysfunction. Someone else can give you

the ICD9 codes that the lab would use to file for

insurance purposes. You would never use a PDD

diagnosis. You would have to view your child as

" mis-diagnosed " . (BTW - Dr 's office sends lab

orders with their information packet - I wonder if

that would help if you could not get a local

pediatrician or DAN doctor to order them for you.)

For getting meds in, we initially crushed them and put

them in very cold rice milk (like a Tbsp) and shot it

in their mouths with a syringe. It was initially

rough, but they quickly found they couldn't fight it

and got a yummy treat immediately to follow it. But

when they were 4 & 2, I just happened to be taking

some pills with them watching, said when they learn to

put the pill straight into their tummys they wouldn't

have to taste the yucky meds anymore, and they blew my

mind by picking up their meds and swallowing them

right on the spot. My two year old just copied his

brother. It was shocking, and easier than I ever

could have hoped. I just wrapped their uncoated

(after washing off the blue dye on Valtrex) in

margarine and they would swallow it right on down.

Just mindblowing! So I wouldn't fret about that right

now - when that time comes, gear up for it by talking

with us and we'll all help you through it.

Hope that helps.

--- Seattlejg@... wrote:

> You mentioned 'if other illnesses have been ruled

> out' it is probably .

> What other illnesses are you referring to? I

> forgot to mention that my son

> didn't regress - he met the physical milestones, but

> not the social/language

> ones. Also - how are your boys doing now? How long

> have you been with Dr. G?

> Thank you so much for your explanation - that makes

> sense. Now I have to

> figure out how to pay for all of those tests - my

> insurance won't cover anything

> associated with PDD. I'm also worried about how in

> the world am I going to

> get any medications in him. He is also very

> limited in what he eats - the only

> thing I can put meds in is juice and if he tastes

> it, he won't drink it.

> His gag reflex is very powerful. Is it possible

> to get things compounded to

> be used transdermally?

>

> T

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

That helps so much - thank you for taking the time to write all of that! I

appreciate it more than you know!

[Guest guest]

,

Regarding billing, since our kids have immune dysregulation, etc., the tests

that Dr. Goldberg runs are billed as such... not under " PDD " . We have a

form of Blue Cross through my husband's employer and nearly everything we

have done through Dr. Goldberg (in office visits, meds, SPECT scans and

labs) has been covered by our insurance, with the exception of a food screen

(about $100 4 years ago) and the phone consultations, which insurance

wouldn't cover even if you were seeing the surgeon general. There might

have been just one med, too (out of many).

Caroline