Re: need some help please!!!!

[Guest guest]

> I understand your frustration! My son is 8yrs old

and I still do not feel that I he has a clear

diagnosis. His report officially says " motor

planning " deficiet, which is as much of a commitment

that any group seems comfortable making now. Yet, more

than one evaluative team has admitted that he

obviously has more going on, but they are not sure

exactly what or the terms to use.

By the way at age 3, Ethan was diagnosed with PDD.

Now no docotor or diagnostic team feels he is anywhere

in the autistic spectrum. So....

I have learned over the years not to get too hung up

on the diagnosis beyond what it means for getting your

child needed services. The first person who ever

evaluated my son was a developmental pediatrician.

When I asked her how she came to her conclusion of PDD

she said, " I am really not sure but it seems that way

to me and it will get you all of the services that he

needs. "

At the time, I didn't understand fully what she was

talking about. I certainly do now!

I am by no means a doctor, but if I were you I would

consider having your child diagnosed by a team in a

major hospital in your area. The team should include

a developmental pediatrician, and will likely include

a speech therapist and a neuropsychologist. I mention

a team because it sounds like your child has a variety

of need areas, and you want to make sure that each one

is investigated. I think that a team is a good place

to start, although I have noticed that their

evaluative reports tend to be more general than you

might get from a single individual. Anyway,

regardless of who you choose, tell the doctor(s) that

you want to make sure that all of your child's needs

are addressed in the report in a way that will get

your child ALL of the services that would be of

beneficial. They can and should be specific about both

the service and the extent/time for the service.

If you don't like the report that is given to you, get

another one from someone else. Present only the one

that best makes your case to the school district or

insurance when looking for services.

If you can find parents in your area who are

experienced with what I call the " insurance and school

district game " seek their advice.

And, my personal opinion is the more extensive the

services you can get at the start-the better. It is

much easier to downgrade your child's services as his

or her needs change than to add to them. And for some

reason, school districts seem more willing to deny new

services, than they are to terminate established ones.

Good Luck.

Audrey

__________________________________________________

[Guest guest]

Hi Tami:

" our problem is this::sara is only getting speech therapy once a week

through early intervention(she receives pt and ot once a week as

well) but her doctors feel thatshe should be receiving speech therapy

3 times a week. "

That is not surprising - I always tell parents that EI is NOT

therapy, it is a federally-funded program to give your child the case

management and supervision she needs, and for YOU the parents to

follow the guidelines set by the therapists the other 167 hours of

the week.

" there is no way we can afford to pay for private therapy, we have 4

>other children, and sara's medical bills are overwhelming us as it

is. "

I don't know where you live, but many states, including New Jersey,

offer a " children's catastrophic medical expense " program. No

diagnosis is required, you simply submit all your medical bills for

the year, your 1040 of your tax return for the year, and if your

expenses exceed a certain percentage of your annual income, the state

rebates back the difference greater than that percentage, tax-free of

course. I would look into this if I were you.

" there is another program which could be of some help to us (it was

called crippled childrens, cant remember what its called now)

>but to qualify sara has to meet certain diagnostic criteria, which

she does not. so i think the thing we need is to have a diagnosis. "

I would look into the Supplemental Security Income (SSI) program of

the Social Security Administration. It would give you a monthly

stipend (inversely dependant on your income) plus guaranteed Medicaid

coverage for services, which, at least in NJ, WILL pay for

speech/OT/PT. All she has to meet is EI criteria for disability

(that is, 33% delay in one area, or 25% delay in more than one

area). Your EI case manager can help you with this.

" would it be something to see a developmental ped for? or neurology?

>or something else?? "

In my opinion, having a " medical home " for your child is the most

important thing, so that you have a solid hub for the wheel of

services she is receiving. Whether this is your primary care doctor,

the neurologist, or the developmental pediatrician, it is the one who

is most comfortable to coordinate care. My bias is, of course, that

based on the training DP's have, we are most adept at doing this.

Good luck,

Larry Laveman, MD

Consultant, CHERAB

http://www.apraxia.cc

[Guest guest]

Hi!

Have you seen a geneticist(?)? When my little one was a couple of

months old we started hunting for her diagnosis and this was our

starting point.

Gloria

[Guest guest]

Tammy-

Besides the doctor of genetics, Thea has seen; peds. neuro (2

different), peds. neurosurg., peds. gastro.(2 different),

peds.cardio., peds. endro./metabolic, peds. ortho., phyciatrist (dr.

of peds. rehab.), Dr. of Audiology/Speech, opthomologist (2

different) ENT (2 different),

nutritionist, orthotist(2 different), SLP with specialty in

swallowing disorders, audiologists, psychologist, special ed teacher

and her therapists. I ask everyone who sees her, even now with

her " diagnosis " if they have a gut reaction. Her pediatrician, ped.

neuro (the one we kept) and ped. endo. agree on her diagnosises.

The other doctor that could help is the phyciatrist(sp?). They are

doctors of rehabilitation medicine. They can be useful in getting

therapies, equipment and

coordinating home care. They see a lot of syndromes. If you have a

local children's hospital you can probably find one there.

Gloria