New to

[Guest guest]

My name is and I have 5 children (4 still at home). Reading through the

information about meuro-immune dysfunction, I felt a chord strike in my brain. I

had decided to look into the neuro-immune dysfunction possibility after reading

something about it in McCarthy's Mother Warriors book. The worst condition

we are dealing with right now is my 6 and a half year old son. He has Mosaic

Down Syndrome, but that is not his issue; he met or exceeded his physical

developmental milestones. He has severe (and I mean severe) verbal apraxia. He

is totally unintelligible when he speaks. Outside of isolated words during spech

therapy and certain words like " no " , he speaks in a myriad of sounds to the tune

of sentence strings that no one can comprehend. We rely heavily on signed

language to accompany the stroke-sounding speech in order to understand him. He

does well with sign language.

Among other disorders in the family, there is rheumatoid arthritis, EBV, APD,

ADD, Dyslexia, Dysgraphia, Dyscalculia, Memory issues, Sequencing issues,

phonological issues, articulation issues, auto immune disorders, immune

deficiency, allergies, asthma, mastocytosis, and one has been diagnosed with a

rare form of CMV (although I suspect it is a misdiagnosis and is Mast Cell

Disease instead).

My son that has the severe verbal apraxia has had severe immune system issues in

the past (low IgA, low CD4, CD8, and CD16---the virus killer cells.) He has

bilateral pulmonary infiltrates of unknown cause, keratosis pilaris, a gluten

intolerance, numerous allergies, and a probable dyslexia. Since we have kept him

home and schooled him, he has had dramatic improvements in his immune system

(because we regulate his germ exposure). He has made some strides in language

(learning negation, some pronoun perspective, etc...) and *some* improvements in

speech, but he is still severely apraxic. He is social and although I would say

he is on the *neurological spectrum*, I know he is not autistic. When I saw

, my initial thought was *THAT'S IT!* It is still my current realm of

thought.

We have a lot of barriers to getting him well though. Limited service (and

getting worse) from Medicaid is the main one. I have recently decided to stop

going to so many different doctors because either they are not helping, are not

ordering the proper tests, or insurance won't pay for the *right* doctor or the

tests we want to get. I even had one doctor refuse to an MRI and I am not hip on

getting tests like MRI's and so it was a big step to even ask.

Considering he has immune system issues, family history of autoimmune disorders

and dyslexia, and severe neurological problem resulting in severe apraxia of

speech (his main issue), I am certain there is a neuro-immune connection.

Does anyone out there know of anything *I* can do to help without expensive

doctors and tests that his insurance refuses to pay for?

I did make an interesting discovery, antihistamines (which help my other son's

speech ....mysteriously...guess it is the CNS connection) have helped some.

Prayer has helped even more.

We currently are using a PUR filtration system on all water he drinks.

He has taken two daily multivitamins for years (a week without multivitamins and

all of my kids go downhill fast and start getting sick....another reason I think

is the answer). He has not needed his Asthma medication in a very long

time; so, I must be doing something right. BUT there is still something very

wrong...his speech.

He did have a lack of oxygen after birth (a homebirth where midwife failed to

give breathing or oxygen and he was not breathing correctly until 911 arrived

and intubated.). I do like the idea of the hyperbaric oxygen, but I think

Medicaid won't pay for that (doubtful).

What else can I do?

[Guest guest]

I second the info below.  In our case, it doesn't matter who draws the blood so

I don't necessarily have to get a local doc to do the labs.  You can ask your

insurance - and be sure to check to see which labs are covered - once in a while

you could go to a lab who isn't in-network with your insurance.

The phone consults are almost never covered by insurance anyway.  Most

insurances will pay for the prescriptions, though, and that's one of the most

helpful ones. 

HTH

________________________________

From: TAMMYandRYAN K <rtnkraft_1@...>

nids < >

Sent: Tue, June 8, 2010 9:13:04 AM

Subject: Re:New to

 

We have a different insurance carrier who does not pay for any of the autism

services, but we are finding ways around it. We recently saw Dr. . Before

we went, we asked our local doctor if she would run the blood work through our

local clinic. She agreed to sign the lab work Dr. sent so our inusurance

paid for it. If we were to get the blood work done outside of our local network,

we would have had to pay for it ourselves. I think it was about $2,000 for the

labs. We had to pay for the office visit ourselves ($500), and will submit it to

our insurance, but I don't think they will pay for that.

[Guest guest]

Thanks. We are going to Dr. in Texas. They said we should get in next

month. Thanks for the advice.

> >

> > My child has adhd, expressive/receptive lang. disorder, and developmental

delay. I know this is a loaded question, but can anyone explain the

treatment to me. I am an RN who has traveled the conventional road for my son

then ventured down the alternative road with diet and supplements. Diet made a

difference. However, the delay is still there.

> >

> > My second question is does anyone have BCBS for insurance? I downloaded the

new patient packet for Dr. . I'm curious to see if all the lab work is

covered or not. Thanks.

> >

>

[Guest guest]

It's my understanding if the doctor bills it as an immune problem rather

than autism, it is covered by insurance. That is the way we have always

done it and it has been covered.

Marcia

[Guest guest]

Hello,

 We are faced with the same problem. May I ask what kind of insurance you have?

We currently only have MEDICAL due to lack of employment.

Also, how can we approach our Dr. with a request to bill as 'immune' problems

Any help would be very much appreciated.

& Inessa

From: and Marcia Hinds <hindssite@...>

Subject: Re:New to

rtnkraft_1@...,

Date: Wednesday, June 9, 2010, 12:45 PM

 

It's my understanding if the doctor bills it as an immune problem rather

than autism, it is covered by insurance. That is the way we have always

done it and it has been covered.

Marcia

[Guest guest]

and Inessa,

Just ask the doctor to bill as an immune issue, because that is what it is.

Also explain the financial circumstance so he knows. Put in autism and

immune in Google and you will get lots of supporting evidence and the latest

research for the doctor. If you come in with a stack of articles, the

doctor won't want to read them, but maybe will just do it.

Marcia

[Guest guest]

Here's the diagnosis codes:

279.3 (Unspecified Immune Deficiency) & 279.9 (Other specified disorders

involving the immune mechanism).

I think Dr G also adds an unspecified neurological dysfunction or dysregulation

code, but the above would work.

HTH

________________________________

From: and Marcia Hinds <hindssite@...>

squids1st@...;

Sent: Fri, June 11, 2010 6:55:55 AM

Subject: Re: New to

 

and Inessa,

Just ask the doctor to bill as an immune issue, because that is what it is.

Also explain the financial circumstance so he knows. Put in autism and

immune in Google and you will get lots of supporting evidence and the latest

research for the doctor. If you come in with a stack of articles, the

doctor won't want to read them, but maybe will just do it.

Marcia

[Guest guest]

Oh Marcia I love you! First a doctor has to find an immune problem before they

can you the diagnosis . Its so long ago you forget first it was neuro-cognitive

dysfunction which is now disallowed and Viral Syndrome can be used but you need

proof or the doc can say hi to the medical board( not in a good way)

Elyse

>

> It's my understanding if the doctor bills it as an immune problem rather

> than autism, it is covered by insurance. That is the way we have always

> done it and it has been covered.

>

> Marcia

>

>

>

>

[Guest guest]

Hey Robin,

Dr has helped me tremendously with my PANDAS.  I would probably still

be incapable of functioning after my most recent episode if  it were not for

him.  You can contact me off-list if you want.

________________________________

From: RobinW <thelancienfamily@...>

Sent: Wed, June 23, 2010 3:55:10 AM

Subject: New to

 

I've been lurking for a little while but thought I'd expose myself since we've

chosen to start the protocol with our son. Cameron is 11 and diagnosed with

PANDAS, PDD-NOS, TS, ADHD, and Celiac. We've tried many programs over the past 8

years and were doing pretty good until about a year ago. I spoke with Dr.

's office yesterday and are getting stared with the labs on Monday. We

live in Japan so it's a bit of a challenge, but fortunately " home " for me is

Dallas so it makes it less of a logistic nightmare. I have many questions so

please be patient as I get up to speed but so many bells have gone off since I

learned about I am positive about visiting a doctor for a change.

Robin & Cameron