Re: Our Dev Ped. Appt.

[Guest guest]

In a message dated 8/21/01 4:32:20 PM Eastern Daylight Time,

STACYRUGH@... writes:

>

Stacey,

I'm glad that you finally got the answers to your questions. Do you or

anyone else have any advice on how I can get an appointment with a Dev. Ped.

within a reasonable time frame? I have spent the last day and a half on the

phone with these doctor offices trying to get my son evaluated. I have only

found one that was taking new patients and that one gave my an appointment

for NEXT year! I live close enough to Atlanta that I didn't think finding a

doctor would be a problem. Any thoughts or advise?

[Guest guest]

-

I have been thinking of you all week - I know how nervous and scared you

were. I am so glad you went and I am so glad your questions were answered.

I know how wonderful it feels when someone FINALLY listens to you and looks

at your wonderful child as a whole person, and someone who gives you answers

you have been searching for. You should be very proud of yourself for

finding this group, being an advocate for your son, and an AMAZING mother.

Graham is so very lucky to have you!!

Carnell

North Carolina

>

> What was wonderful about it was that we finally have some answers. Dr

Cardwell was WONDERFUL He treated Graham like the special kid he is. And

he told us that they observed the same behaviors we do at home. He came

away with 3 different diagnoses. The first was Nuerologic Dismaturity. Does

anyone know what this is I'm a bit confused. SEcond was oral and verbal

apraxia. And 3rd was SI . ( The last 2 wich I had suspected.) He told us

we would continue with speech therapy and start OT. I am not happy my son

has these problems, but it makes me feel like I am not as crazy as some of

my well meaning friends have made me feel.

>

> Thanks once again for listening. And if anyone can discribe what that one

diagnosis is. Ihave never heard of that.

>

[Guest guest]

,

I am so sorry to hear that appts are running so far out. We did not find

that problem. We only have one Dev Ped in our area and it only took us a

little over a month to get in. See if they have a cancelation list and if

they do get on it. Another thought is Get your pediatrician involved. See

if his/her office can get you in sooner by pulling some strings. And last

have you considered going to another city for the evaluation? I am sorry I

couldn't be more help. Maybe some of the professionals on the listserv

could be of more help.

>

> I'm glad that you finally got the answers to your questions. Do you or

> anyone else have any advice on how I can get an appointment with a Dev.

Ped.

> within a reasonable time frame? I have spent the last day and a half on

the

> phone with these doctor offices trying to get my son evaluated. I have

only

> found one that was taking new patients and that one gave my an appointment

> for NEXT year! I live close enough to Atlanta that I didn't think finding

a

> doctor would be a problem. Any thoughts or advise?

>

>

[Guest guest]

Sorry, I know it can take a very long time. In my area (I live in Cincinnati)

the waiting list is approximately six months.

[Guest guest]

I am going through the same thing myself! I just called on Monday and was given

an appointment in JANUARY! The other doc didn't have an appointment until Feb! I

am on the cancellation list for both but so are like 50 other people! And there

are not very many dev peds here either.

I am sorry for you!

[Guest guest]

Hi :

I am very glad that you liked Dr. Cardwell - it is always nice to

hear complements for colleagues.

" Neurologic Dysmaturity " is a grab-bag diagnosis - it is probably

what Dr. Cardwell uses to get the bills paid - it is a " hard "

neurologic diagnosis that insurance companies will pay on,

versus " soft " diagnoses like apraxia and learning disabilities. It

says that the brain is " different " , without saying there are holes in

it...that is, that there are molecular immaturities in the brain that

cannot be seen under the microscope that cause the delayed skills

your son has.

Some colleagues of mine will use the term " Static Encephalopathy " for

the same purpose - I personally will not. A mentor of mine said many

years ago that if you can see the lesion, you can call it an

encephalopathy, otherwise, call it like it is.

There will come a time soon when we can study the biochemistry of

developmental delay in a more accurate way, but for the time being,

we can't take out the brain and cut a piece out to study, like we

would biopsy the kidney or the liver. When that is possible,

the " dysmaturities " will be evident, and we won't need vague

diagnoses.

Hippocrates diagnosed diabetes by the sugar in people's urine. Then,

2500 years later, we found out that it was a lack of insulin that

caused it. We are still in the toddler stage in understanding the

brain - but things are moving faster by the day.

Good luck to you and your son,

Larry Laveman, MD

Consultant - CHERAB

http://www.apraxia.cc

> Hello Everyone.

>

> Graham and I just got back from our appt. with the Dev. Ped. It

was a horrible and wonderful experience all at the same time.

>

> It was horrible because we sat in there and had to state everything

that was wrong with Graham. My husband got offended at me because of

this. He wasn't mad, it just hurt him to hear all this said to a

complete stranger. I cried because I felt like a horrible mom

relating all that my son couldn't do. Fortunately, Graham was in

another room being evaluated by a nurse. While a Resident was

interviewing us.

>

> What was wonderful about it was that we finally have some answers.

Dr Cardwell was WONDERFUL He treated Graham like the special kid he

is. And he told us that they observed the same behaviors we do at

home. He came away with 3 different diagnoses. The first was

Nuerologic Dismaturity. Does anyone know what this is I'm a bit

confused. SEcond was oral and verbal apraxia. And 3rd was SI . (

The last 2 wich I had suspected.) He told us we would continue with

speech therapy and start OT. I am not happy my son has these

problems, but it makes me feel like I am not as crazy as some of my

well meaning friends have made me feel.

>

> Thanks once again for listening. And if anyone can discribe what

that one diagnosis is. Ihave never heard of that.

>

[Guest guest]

Dr Laveman,

Thank you for your response. It helped me understand the diagnosis. I

forwarded it to my husband at work. He works in the medical field and had

never heard this term used. Thanks for all your help bringing understanding

of these terms to the most fortunate parents in the world!

In respect,

STacy

> Hi :

>

> I am very glad that you liked Dr. Cardwell - it is always nice to

> hear complements for colleagues.

>

> " Neurologic Dysmaturity " is a grab-bag diagnosis - it is probably

> what Dr. Cardwell uses to get the bills paid - it is a " hard "

> neurologic diagnosis that insurance companies will pay on,

> versus " soft " diagnoses like apraxia and learning disabilities. It

> says that the brain is " different " , without saying there are holes in

> it...that is, that there are molecular immaturities in the brain that

> cannot be seen under the microscope that cause the delayed skills

> your son has.

>

> Some colleagues of mine will use the term " Static Encephalopathy " for

> the same purpose - I personally will not. A mentor of mine said many

> years ago that if you can see the lesion, you can call it an

> encephalopathy, otherwise, call it like it is.

>

> There will come a time soon when we can study the biochemistry of

> developmental delay in a more accurate way, but for the time being,

> we can't take out the brain and cut a piece out to study, like we

> would biopsy the kidney or the liver. When that is possible,

> the " dysmaturities " will be evident, and we won't need vague

> diagnoses.

>

> Hippocrates diagnosed diabetes by the sugar in people's urine. Then,

> 2500 years later, we found out that it was a lack of insulin that

> caused it. We are still in the toddler stage in understanding the

> brain - but things are moving faster by the day.

>

> Good luck to you and your son,

>

> Larry Laveman, MD

> Consultant - CHERAB

> http://www.apraxia.cc

[Guest guest]

I'm in northeast Atlanta area and haven't felt the need to see a dev.

pedatrician as our regular pediatrician has been wonderful and we

have also seen a neurologist. But I did have a devlopmental

pediatrician call ME and offer me an appointment for later that

month! I called our pediatrician and asked her if she felt that was

necessary since we are already receiving services and have an apraxia

diagnosis. Even more good news, our ped. and the dev. pediatrician

are friends and went to medical college together so our pediatrician

called the dev.ped and called me back and said they decided together

we didn't need the additional appointment. Sooo...possibly you may

not need the appointment with the dev. pediatrician. If you do want

one though and would be willing to drive instead of waiting, email me

and I'll give you the number of our pediatrician who can give you the

number to this particular dev. ped. She is a dev. ped. at the

Medical College of Georgia in Augusta but comes to Athens (I know its

a little further than we like to drive normally also) once a month at

the Children's Medical Center to see patients there. (at least we

haven't had to drive to Augusta yet) Also, the Marcus Institue was a

VERY good idea. You might also try to call ish Rite and get in

there. (we go there for the cranial facial specialist) I know its

frustrating but I'm sure you can find one that can get you in before

next year!

Hannah mom to LeAnne and