Re: PID and Autism

August 26, 2007

I think you are heading in the right direction with what you have chosen to do.

I have had a friend that just went through some autism testing with her oldest

one and I can find out what they did to her and get back with you.

Cassie

Future Director of the Charismatic Carolers

www.marykay.com/cassieredinger

August 26, 2007

Hi Misty

This is , Blake's mom (Richland hospital)

I know just how you feel. Blake was Jake's age when we were finally told he

was Autistic.

He had been DX'ed with the PID just 6 mos. earlier. Blake has what is called

Asperger's Syndrome. This is HIGH functioning Autism.

I was devastated to hear it, but glad they could actually come up with a

reason for his " weird " behavior. Plus we always chalked things up to just pure

" Blake-ism " . He was laways in his own world & had to do things his way, forget

anyone else with an idea. It was his " pararell play " instead of " co-operative

play " that had the folks concerned the most.... & the thing is I let it go & I

worked with Special Needs teens & adults, not even thinking this was all the

same stuff my child was doing!!!!

I wish you lots of luck with finding out all that entails Jake's DX. If you

have any ??'s give me a call...email me separate from the group & I can give you

my ### & help you find someone to help you & Jake with this....that is the first

important step besides DX.

Mom to Blake, 15....Severe Combined Immunodeficiency with Complete T-Cell

Dysfunction, (IVIG every 2 weeks for 8 yrs... Now on SCIG weekly at HOME!!!!!)

Asperger's Syndrome &

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Misty <mistycmathis@...> wrote:

I have not posted in a while things here have been going really well

Jake is currently trialing off IVIG and so far things have been

great. Jake started Kindergarten last Monday and his teacher was

calling me by Wednesday....she feels that Jake is Mildly

Autisic...starting this week the school is bringing in an

occupational therapist and a speech therapist to work with him. I

had the same concerns myself but I have not explored autism because

I was not sure if some of these behaviors were because he has been

so sick..he has trouble trusting most adults, he does not interact

with other children to much, he has robotic speech and according to

the teacher he is in his own little world at school and she cannot

produce any work out of him. I have noticed all of this in Jake but

I have always chalked it up to his " quirks " , but like I said I have

thought of Autism. I just feel like such and idiot for not taking

his quirks more seriously..I should have known I am a SPECIAL NEEDS

TEACHER!!! So right now I am at a stand still on what I should

do...this is my plan and someone chime in if you think I am making a

mistake I will not be offended...I am going to let the O. Therapist

and S Therapist work with him and then in Oct the beginning of Oct

we will have a Parent teacher conf and bring in the therapist to see

what we all think...and take it from there...is that a bad idea? My

husband is not taking this to well he has a hard time handling the

PID part I have always handled the hospital, doctors and ifusions by

myself(he has been there not just much help) God Bless him he is a

wonderful father and husband he just can't handle it. I would

appreciae any advice. What does and evaluation for Autism entail? I

work in special needs with the Educably Mentally Disabled (High

School, so pray for me I have had a week with them) I have never had

any experience with Autism. Thanks in advance!

Misty

Mom to 5 yr old Jake

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

Boardwalk for $500? In 2007? Ha!

Play Monopoly Here and Now (it's updated for today's economy) at Games.

August 26, 2007

Hi hon...

I don't usually say a lot on this board beacause most of the stuff on

here that's asked is better answered by the more seasoned moms here -

but for this question - I have to say that I've had a bit of

experience in this area - so I'd like to chime in.

I'm SO sorry that you feel the way you do. Please try not to be so

hard on yourself. Sometimes, when you work in special ed - you see

so much worse than the 'mild' stuff and so you don't really think a

whole lot about it.

I would like to encourage you to find a great neurologist and

developmental psychologist ASAP. I'd also contact your pediatrician

and discuss this with that person as well.

The neurologist rules out 'neurological' reasons for the behaviors

you are seeing. A lot of times the neuro will do an MRI (unless one

already has been done) and then some bloodwork (check for other

genetic things that can mimic autism). Once all that is ruled out -

then the diagnosis can be made if it fits the criteria needed to

diagnose it if the neurologist sees fit - a lot of times they

say 'Yep, we think it's autism' and then you go on and have the

standard tests to see level of function and assess need for therapies

and treatments.

Your next step will be a developmental psychologist.

A developmental psychologist (I'd find one who has an area of

expertise in Autism and developmental disorders - you might have to

wait a while - but make that appointment regardless!) will do the

ADOS testing (diagnostic testing used to screen for autism) and most

likely a few other standard tests to check level of function or

delay.

Depending on level of function/delay/need your child may need extra

speech/OT/PT - but you are also entitled to ABA (Applied Behavioral

Analysis Therapy) if the dev. psychologist thinks it will be helpful.

Here's a link on that:

http://www.brighttots.com/aba_therapy.html

Also, at this point I would like to say that A LOT of schools can be

GREAT at offering services - but please be aware that there are quite

a few occasions too that the school could do more and they don't -

not because they don't want to - but because it might not be

financially beneficial to them - and they will do JUST ENOUGH to get

the child by - but they could be doing MORE ---- so you need to call

them to task if you think your child needs more and they aren't

providing it. I have to say that you're probably in pretty good

shape if they are coming to you and talking to you about it - so try

not to stress about it.

If you're not already familiar with the IDEA laws, here's a link on

it - I would read up and take notes so you are educated and aware of

your rights (there's a special section in there that has to do with

treatment for Autism in the school setting since there were SO many

problems with children getting the services that they NEEDED through

the school system)

http://idea.ed.gov/

The key is EARLY intervention....the earlier you get on top of this -

the better off your child will be at this point.

PHEW...it's A LOT to digest....but if you'd like to email me about

it - I'd be more than happy to provide you with helpful links and

offer any advice I can to help you along the way.

I'm a mom of a child who has a form of Autism called PDD-NOS - and

he's doing BEAUTIFULLY - he receives ABA home therapy 4x a week and

goes to school for 12 1/2 hours a week in an integrated preschool

program. We've been very fortunate with our school system and I know

for some it's not as easy - so if I can help in any way, please let

me know.

BIG HUGS....it's not easy....and it's NOT your fault~

Stef

>

> I have not posted in a while things here have been going really

well

> Jake is currently trialing off IVIG and so far things have been

> great. Jake started Kindergarten last Monday and his teacher was

> calling me by Wednesday....she feels that Jake is Mildly

> Autisic...starting this week the school is bringing in an

> occupational therapist and a speech therapist to work with him. I

> had the same concerns myself but I have not explored autism because

> I was not sure if some of these behaviors were because he has been

> so sick..he has trouble trusting most adults, he does not interact

> with other children to much, he has robotic speech and according to

> the teacher he is in his own little world at school and she cannot

> produce any work out of him. I have noticed all of this in Jake but

> I have always chalked it up to his " quirks " , but like I said I have

> thought of Autism. I just feel like such and idiot for not taking

> his quirks more seriously..I should have known I am a SPECIAL NEEDS

> TEACHER!!! So right now I am at a stand still on what I should

> do...this is my plan and someone chime in if you think I am making

a

> mistake I will not be offended...I am going to let the O. Therapist

> and S Therapist work with him and then in Oct the beginning of Oct

> we will have a Parent teacher conf and bring in the therapist to

see

> what we all think...and take it from there...is that a bad idea?

My

> husband is not taking this to well he has a hard time handling the

> PID part I have always handled the hospital, doctors and ifusions

by

> myself(he has been there not just much help) God Bless him he is a

> wonderful father and husband he just can't handle it. I would

> appreciae any advice. What does and evaluation for Autism entail?

I

> work in special needs with the Educably Mentally Disabled (High

> School, so pray for me I have had a week with them) I have never

had

> any experience with Autism. Thanks in advance!

>

> Misty

> Mom to 5 yr old Jake

>

August 26, 2007

Hi Misty,

Many of us with a child on the autism spectrum got the autism diagnosis first

and then learned about the immune system connection and got our kids tested for

a PID -- in some ways you are ahead of the game in getting the PID diagnosed and

treated first. You are already treating a partial cause of the autism (without

knowing it). The autism protocol for IVIG, however, is 800 mg/kg body weight

for a minimum of 18 months before trialing off -- did Jake receive that?

Don't think a school district has the power or ability to dx autism. You need

a developmental pediatrician and a habilitation that goes beyond school hours.

You will not get proper services if you do not get the dx from the right place.

A child with autism is entitled to 40 hours a week of 1-on-1 ABA therapy and the

school district will not willingly give that, especially not without a proper

diagnosis.

I would also start looking into the other medical issues that plague our kids.

First rule out other causes for the behavior (metabolic, seizure, celiac,

mitochondrial, other neurological disorder), then if you can rule those out,

have him checked for & treated for the co-morbid conditions of autism

(intestinal bacterial/yeast overgrowth, ulcerative colitis and Crohn's, food

allergies/sensitivities, hypothyroidism, problems with B-12 metabolism & more).

You can use specialist to treat each individual problem or use a DAN doctor (see

the autism research institute http://www.autism.com/index.htm for info) or a

combination. Kids with autism improve when their underlying medical conditions

are addressed.

Good Luck & don't waste time beating yourself up -- just get proactive & let

your husband accept it in his own time.

-