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Re: Kennedy-Krieger

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We went about a year ago also for our initial consult with Dr. Capone. I

guess I was just looking for more confirmation on the dual diagnosis and I

wanted to get it from The Man. But I didn't really come away feeling like I

had any new insights on Kayla, since her local developmental pediatrician

already suggested Risperdal.

I was debating on going back, but the economy being what it is, I'll

probably skip it, since we have to pay for it out of pocket. I do follow up

on any surveys and if they request info for research.

When it comes to any " experts " on DS/ASD, I just turn to you guys.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

http://oppositekids.blogspot.com/

_____

From: [mailto: ] On Behalf

Of Dolly Schmitt

Sent: Friday, January 15, 2010 6:51 AM

To:

Subject: Kennedy-Krieger

I took my son to see Dr. Capone a year ago. I was so excited about finally

getting him an appointment and had high hopes. Now don't get me wrong, the

research they do at the institute is wonderful. But I wasn't impressed with

the initial consult. It was alot of questions for my husband and I. Not much

interaction with at all. He did think he had PDD, and was quick to

prescribe Resperidal, in a low dose. I was disappointed in this. I thought

he would suggest other methods of modication. To be fair, he said the drug

may help focus better so we can try other ways to help him learn. I'm

not a big fan of drugs to help our kids, but thats my own opinion. So I was

quite disappointed.

I would suggest going to Cincinnati Children's Hospital...Down Syndrome

Clinic. They were much more focused on the whole child. From Nutrician, to

sleep habits, to ABA therapy. I was quite pleased with their approach.

Good luck....Dolly

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I had the opportunity to meet Dr. Capone at a conference he gave here at

Children's Hospital Milwaukee over a year ago. So, I was fortunate to get

his opinion for only $25. I had suspicions of having autism but no

other doc or therapist would agree. He was also the only doc that told me

myoclonic jerk seizures were pretty much always a pathway to autism - and

she had those since age 10 months - neither of the two neurologists that she

saw had told us that.

Anyway, I'm interested in knowing more about Dr. Bonnie in Cincinnati.

What type of doctor is she and what does it cost to see her? Cincinnati

seems to be pretty progressive when it comes to Down syndrome.

Thanks!

Heidi -- Wisconsin, USA

(Mom to 8 w/ DS, ASD, epilepsy; Clara 3)

No two flowers bloom in exactly the same way, but all are beautiful !

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Thanks Dolly you have given me another place to look into!!!! We do all need

hope.....Ane

To:

From: dontsayduck627@...

Date: Fri, 15 Jan 2010 03:50:56 -0800

Subject: Kennedy-Krieger

I took my son to see Dr. Capone a year ago. I was so excited about

finally getting him an appointment and had high hopes. Now don't get me wrong,

the research they do at the institute is wonderful. But I wasn't impressed with

the initial consult. It was alot of questions for my husband and I. Not much

interaction with at all. He did think he had PDD, and was quick to

prescribe Resperidal, in a low dose. I was disappointed in this. I thought he

would suggest other methods of modication. To be fair, he said the drug may

help focus better so we can try other ways to help him learn. I'm not a

big fan of drugs to help our kids, but thats my own opinion. So I was quite

disappointed.

I would suggest going to Cincinnati Children's Hospital...Down Syndrome Clinic.

They were much more focused on the whole child. From Nutrician, to sleep

habits, to ABA therapy. I was quite pleased with their approach.

Good luck....Dolly

_________________________________________________________________

Hotmail: Powerful Free email with security by Microsoft.

http://clk.atdmt.com/GBL/go/196390710/direct/01/

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Dolly,

I too, was very pleased w/the Cincinnati Children's Hospital w/Dr. Bonnie

.

Irma,21,DS/ASD

On Fri, Jan 15, 2010 at 3:50 AM, Dolly Schmitt wrote:

>

>

> I took my son to see Dr. Capone a year ago. I was so excited about finally

> getting him an appointment and had high hopes. Now don't get me wrong, the

> research they do at the institute is wonderful. But I wasn't impressed with

> the initial consult. It was alot of questions for my husband and I. Not much

> interaction with at all. He did think he had PDD, and was quick to

> prescribe Resperidal, in a low dose. I was disappointed in this. I thought

> he would suggest other methods of modication. To be fair, he said the drug

> may help focus better so we can try other ways to help him learn. I'm

> not a big fan of drugs to help our kids, but thats my own opinion. So I was

> quite disappointed.

> I would suggest going to Cincinnati Children's Hospital...Down Syndrome

> Clinic. They were much more focused on the whole child. From Nutrician, to

> sleep habits, to ABA therapy. I was quite pleased with their approach.

> Good luck....Dolly

>

>

>

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Is Dr. still practicing? Someone who recently went to the

Cincinnati DS clinic told me she retired? We vacation in Ohio every year

since my family lives there. Was going to look into if our insurance would

cover the DS clinic there.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

Sullivan County, NY

http://oppositekids.blogspot.com/

Re: Kennedy-Krieger

Dolly,

I too, was very pleased w/the Cincinnati Children's Hospital w/Dr. Bonnie

.

Irma,21,DS/ASD

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Oh know would of love to have heard from Dr. that she was

retiring. She always emailed us with " How are y'all doing Texas folks? " Nice

to stay in touch across the miles, just to stay in tune w/'s update &

would suggest who or what when things did not pan out. I hope other medical

physician's learn from here if she is no longer with the Children's

Cincinnati DS clinic. All the therapist were really great as well.

Glad our insurance was part of their network which was United Healthcare.

I would still look into it, isn't Dr. Malloy still here on the listserve or

part of the DS clinic.

She sounded pretty good.

Irma, 21DS/ASD

>

>

> Is Dr. still practicing? Someone who recently went to the

> Cincinnati DS clinic told me she retired? We vacation in Ohio every year

> since my family lives there. Was going to look into if our insurance would

> cover the DS clinic there.

>

>

> Ecki

> Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

> Sullivan County, NY

> http://oppositekids.blogspot.com/

>

>

> Re: Kennedy-Krieger

>

> Dolly,

>

> I too, was very pleased w/the Cincinnati Children's Hospital w/Dr. Bonnie

> .

>

> Irma,21,DS/ASD

>

>

>

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Sorry for the typos. Oh well, same ole me butterfingers.

Irma

On Fri, Jan 15, 2010 at 12:36 PM, Irma Canfield wrote:

> Oh no, would of love to have heard from Dr. that she was

> retiring. She always emailed us with " How are y'all doing Texas folks? " Nice

> to stay in touch across the miles, just to stay in tune w/'s update &

> would suggest who or what when things did not pan out. I hope other medical

> physician's learn from her if she is no longer with the Children's

> Cincinnati DS clinic. All the therapist were really great as well.

> Glad our insurance was part of their network which was United Healthcare.

> I would still look into it, isn't Dr. Malloy still here on the listserve or

> part of the DS clinic?

> She sounded pretty good.

>

>

> Irma, 21DS/ASD

>

>

>

>

>

>>

>>

>> Is Dr. still practicing? Someone who recently went to the

>> Cincinnati DS clinic told me she retired? We vacation in Ohio every year

>> since my family lives there. Was going to look into if our insurance would

>> cover the DS clinic there.

>>

>>

>> Ecki

>> Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

>> Sullivan County, NY

>> http://oppositekids.blogspot.com/

>>

>>

>> Re: Kennedy-Krieger

>>

>> Dolly,

>>

>> I too, was very pleased w/the Cincinnati Children's Hospital w/Dr. Bonnie

>> .

>>

>> Irma,21,DS/ASD

>>

>>

>>

>

>

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