Re: Re: question about geneticist

[Guest guest]

Parents could also get all the medical checklist information and provide to

their pediatricians for guidance and avoid an extra trip to a geneticist. Our

developmental pediatricians share information with local pediatricians here.

Cheryl in VA

[Guest guest]

I was not trying to force anyone to see a geneticists, I was trying to point

out some factors when considering if you should or should not. Depending on

what type of health insurance you have some pediatricians my share

information. I have an HMO which has been very good, in fact it was the

pediatrician that recommended that we see the geneticists since my son was

only his second patient that he has had with DS and both children are not

more than a year apart in age. He does not have years of experience with

DS.

What is the difference between a developmental pediatrician and a regular

pediatrician? My HMO only has pediatrician and non designated as

developmental pediatricians.

Katy

Re: Re: question about geneticist

> Parents could also get all the medical checklist information and provide

to their pediatricians for guidance and avoid an extra trip to a geneticist.

Our developmental pediatricians share information with local pediatricians

here.

> Cheryl in VA

>

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[Guest guest]

We saw a genetecist for the first 18 months of 's life, from

her diagnosis at ~4 hours old, until we moved. He was a fantastic

person, and was so positive about how " normal " her life could be (and

ours), really stressed how much she would be like her sister, rather

than different, etc. I kept up on her developmentally during this time,

and ordered tests for the pediatrician to order (thyroid, etc).

When we moved, our insurance didn't want to pay for genetics, and the

pediatrician didn't really see a need because she sees a lot of kids

with DS (though she said she would write a referral and we would fight

insurnace if I wanted). I decided to see how it went, and have been

happy with how has been followed. In the beginning, I would

print out the recommendations from Dr. Len's website and take them to

the pediatrician at 's checkups. I have also shared medical

abstracts with her about celiac and other things, and she has ordered

(so far) anything that has been needed without a blink.

That said, if we were near to a DS clinic, I would probably still make a

visit there every year or two, just for more information. I thought all

the developmental testing that she had early on was great. It really

didn't make a difference in what therapies we received, or how we

parented her, but it was great to follow her successes!

, mom to (8), (6 DS), and (4)

Katy Touve wrote:

>I was not trying to force anyone to see a geneticists, I was trying to point

>out some factors when considering if you should or should not. Depending on

>what type of health insurance you have some pediatricians my share

>information. I have an HMO which has been very good, in fact it was the

>pediatrician that recommended that we see the geneticists since my son was

>only his second patient that he has had with DS and both children are not

>more than a year apart in age. He does not have years of experience with

>DS.

>

>What is the difference between a developmental pediatrician and a regular

>pediatrician? My HMO only has pediatrician and non designated as

>developmental pediatricians.

>

>Katy

>

> Re: Re: question about geneticist

>

>

>

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>>Parents could also get all the medical checklist information and provide

>>

>>

>to their pediatricians for guidance and avoid an extra trip to a geneticist.

>Our developmental pediatricians share information with local pediatricians

>here.

>

>

>>Cheryl in VA

>>

>>

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>Click reply to all for messages to go to the list. Just hit reply for messages

to go to the sender of the message.

>

[Guest guest]

I don't think anyone feels forced to see one type of a doctor over another.

I think it helps parents to give the most info they can to the doctor their

child will see the most. Geneticists often are not the " caretakers " of our

kids.

My family doc was qualified to be a ped, he cared for both of my kids from

birth on. I shared info with him, signed him up to national newsletters as well

as our local support group one. He also shared info with me when he found

it. He appreciated (and still does) my value as a resource for him.

Once I was sent to a specialist for ear tubes, and I brought literature

related to DS with me. The doctor dismissed my papers, told me I was just a mom

and didn't need to show him articles. I did not trust that person with my

child, called my family doc and told him. He called that doc, set him straight,

and found another specialist for us to see.

Cheryl in VA

[Guest guest]

One thing I have done several times with new doctors, is write them a

letter, telling them about and how well he's done. etc. It humanizes

him, especially at a large hospital, etc. I have done that once or twice for

friends too. We had one friend whose parents were gone and he had no family.

He had cancer. I wrote to his doctor and told him that altho Rick had no

family he had many friends and we all loved him, and how important we was to

all of us. His care picked up considerably.

Jessie