Need Advice for Convention 2004

[Guest guest]

This email is for anyone who attended the MAGIC convention this past

summer. We were going to be asking you to fill out a survey, but it

has been delayed as everyone in Katy's family has had the flu.

I need to ask your advice. Right now, we have invited Dr. H and Dr.

Stanhope to speak again together -- have not heard back from

Stanhope.

We also hope to receive an acceptance from Sir Barker, the

epidemiologist from England who published the HUGE study on health

risks as adults (the big insulin resistance study) for adults who

were born SGA as babies. If he can not attend, we want to have

someone speak to insulin resistance.

We also will be having a GI doctor (probably Dumont) and Dr.

Spigland, the peds surgeon from new York who has been doing all

these special pyloroplasties, etc. with Dr. H -- they will be

speaking on the common gut dysmotility problems that RSS and SGA

kids have (they will also speak to any of the latest studies that

they are doing). These speakers have confirmed and are coming.

The sad news is that we really wanted to offer the nutrition talk

and extend the feeding therapy practical hands-on tips for an extra

2 hours, but both of the Easter Seals feeding therapists can not

attend. We may have to hold off until the following year.

We also are going to have a session on the Practical Adjustments

that have to be made to live as a short-statured adult. The RSS

adults will be present on a panel, some of their parents, etc. - and

hopefully a moderator. Katy came up with a great idea of having a

slide show from the RSS/SGA teens and adults.

We are also going to have a session on Marriage and Family -- living

with a " chronically ill " child. A psychologist will be leading this

one, and it should be really good.

So.... the question is... what else??? Especially if we have to

remove the Nutrition/Feeding Therapy sessions. What is important to

you all? What are we missing?

Dale gave us a contact to have a speaker on ADD-ADHD, and we

are going to do our best to arrange that speaker.

Let's see what else. We hope to do the pool party again. And this

year, I am rooting for a " Teen Room. " I want to set aside a room at

night for the teens to hang out, we'll rent a foosball table, TV and

X-Box, ping pong table, order pizza in, etc. Cross your fingers.

The RSS adults hope to have a big turn out as well.

Oh, and we hope to have a " decompensation " room -- a quiet room

where parents can come and there will " experienced " RSS parents

there who can help you decompress what you just heard in the

sessions.

What other presentations would you find helpful??? The open

presentation spots are basically 90 minutes long. Katy and I have

to have EVERYTHING nailed down no later than November 8th, when we

fly to Chicago for a division director meeting. That is just 4

weeks away, yee gads.

[Guest guest]

Hi

There are a few RSS kids who have pulmonary issues. I do not know the

statistics but could it be prudent to have a pulminologist speak and also

maybe in conjunction with children who have pulmonary issues. I know a

pulminologist and a therapist who have done a similar type of presentation

together. I am unsure of who their audience was. I think it was

therapists. If you think there will be enough interest contact me and I can

give you some names to start with.

J

>

> Reply-To: RSS-Support

> Date: Mon, 13 Oct 2003 03:53:35 -0000

> To: RSS-Support

> Subject: Need Advice for Convention 2004

>

> This email is for anyone who attended the MAGIC convention this past

> summer. We were going to be asking you to fill out a survey, but it

> has been delayed as everyone in Katy's family has had the flu.

>

> I need to ask your advice. Right now, we have invited Dr. H and Dr.

> Stanhope to speak again together -- have not heard back from

> Stanhope.

>

> We also hope to receive an acceptance from Sir Barker, the

> epidemiologist from England who published the HUGE study on health

> risks as adults (the big insulin resistance study) for adults who

> were born SGA as babies. If he can not attend, we want to have

> someone speak to insulin resistance.

>

> We also will be having a GI doctor (probably Dumont) and Dr.

> Spigland, the peds surgeon from new York who has been doing all

> these special pyloroplasties, etc. with Dr. H -- they will be

> speaking on the common gut dysmotility problems that RSS and SGA

> kids have (they will also speak to any of the latest studies that

> they are doing). These speakers have confirmed and are coming.

>

> The sad news is that we really wanted to offer the nutrition talk

> and extend the feeding therapy practical hands-on tips for an extra

> 2 hours, but both of the Easter Seals feeding therapists can not

> attend. We may have to hold off until the following year.

>

> We also are going to have a session on the Practical Adjustments

> that have to be made to live as a short-statured adult. The RSS

> adults will be present on a panel, some of their parents, etc. - and

> hopefully a moderator. Katy came up with a great idea of having a

> slide show from the RSS/SGA teens and adults.

>

> We are also going to have a session on Marriage and Family -- living

> with a " chronically ill " child. A psychologist will be leading this

> one, and it should be really good.

>

> So.... the question is... what else??? Especially if we have to

> remove the Nutrition/Feeding Therapy sessions. What is important to

> you all? What are we missing?

>

> Dale gave us a contact to have a speaker on ADD-ADHD, and we

> are going to do our best to arrange that speaker.

>

> Let's see what else. We hope to do the pool party again. And this

> year, I am rooting for a " Teen Room. " I want to set aside a room at

> night for the teens to hang out, we'll rent a foosball table, TV and

> X-Box, ping pong table, order pizza in, etc. Cross your fingers.

>

> The RSS adults hope to have a big turn out as well.

>

> Oh, and we hope to have a " decompensation " room -- a quiet room

> where parents can come and there will " experienced " RSS parents

> there who can help you decompress what you just heard in the

> sessions.

>

> What other presentations would you find helpful??? The open

> presentation spots are basically 90 minutes long. Katy and I have

> to have EVERYTHING nailed down no later than November 8th, when we

> fly to Chicago for a division director meeting. That is just 4

> weeks away, yee gads.

>

>

>

>

>

>

>

>

[Guest guest]

,

THis summer at the convention a couple of us were talking (Donna

Klamer, Dickinsons, and I can't remember who else) and we were

commenting on how encouraging it would be to hear about many of the

great things these RSS kids are doing as they get older. Donna

mentioned that her daughters are musicians, they are on honor roll,

etc. I think it would be nice to see somehow spotlight the

accomplishments of the kids, just to encourage the younger ones and

parents that so much can be achieved.

I'm not sure how we would do it, maybe just a scrap book of each

kid and the things they love to do. As you can tell it was just a

brief conversation but it was within the context that we spend a lot

of time focusing on the hard times (medical problems, school issues,

etc.) and maybe we could spend some time on the great things they

are already doing.

Pattie

[Guest guest]

,

Here are a few topics I think some people would find useful:

1) how to calculate calorie requirements at different stages of your

child's growth to

ensure he/she stays within the recommended 10% - 25% weight for

height (using BMI)

2) information on federal & state programs that RSS children &

families could access

(how & where to apply, income requirements, etc.)

3) session in which parents can share pregnancy histories to collect

data on

complications that may have led to RSS

4) more in depth presentations about learning difficulties & IEP

process in school (i.e.

definition & qualifications for learning disabilities; what kind of

testing to ask for if your

child is having difficulties in processing or particular subject

areas; how OT, PT, and ST

services differ in school from the private sector; ramifications of

testing for learning

disabilities at different ages; service delivery models in school;

applying for an aide/

assistant or nurse for your child for various reasons such as

feeding, medical

procedures, etc.; rules for applying for homebound school for a

period when your child

is ill & out of school for extended lengths; allowable accommodations

in class & in

standardized testing situations; understanding your procedural

safeguards & how to file

due process if you do not agree with IEP committee recommendations)

5) how to get your health insurance company to cover doctor's visits

to doctors not on

your insurance plan or tests not usually covered & how to submit an

appeal/grievance

when you disagree with insurance company's recommendation

Also, families might find it useful to have a database of

endocrinologists,

gastroenterologists, orthopedic doctors, other specialists, etc.

recommended by other

families in all areas of U.S. just in case they are unhappy with

their current doctors & are

looking for someone who has some familiarity with RSS.

I'd like to add that I attended the convention this year for the

first time & found all the

information very informative!

Kim C.

> This email is for anyone who attended the MAGIC convention this

past

> summer. We were going to be asking you to fill out a survey, but

it

> has been delayed as everyone in Katy's family has had the flu.

>

> I need to ask your advice. Right now, we have invited Dr. H and

Dr.

> Stanhope to speak again together -- have not heard back from

> Stanhope.

>

> We also hope to receive an acceptance from Sir Barker, the

> epidemiologist from England who published the HUGE study on health

> risks as adults (the big insulin resistance study) for adults who

> were born SGA as babies. If he can not attend, we want to have

> someone speak to insulin resistance.

>

> We also will be having a GI doctor (probably Dumont) and Dr.

> Spigland, the peds surgeon from new York who has been doing all

> these special pyloroplasties, etc. with Dr. H -- they will be

> speaking on the common gut dysmotility problems that RSS and SGA

> kids have (they will also speak to any of the latest studies that

> they are doing). These speakers have confirmed and are coming.

>

> The sad news is that we really wanted to offer the nutrition talk

> and extend the feeding therapy practical hands-on tips for an extra

> 2 hours, but both of the Easter Seals feeding therapists can not

> attend. We may have to hold off until the following year.

>

> We also are going to have a session on the Practical Adjustments

> that have to be made to live as a short-statured adult. The RSS

> adults will be present on a panel, some of their parents, etc. -

and

> hopefully a moderator. Katy came up with a great idea of having a

> slide show from the RSS/SGA teens and adults.

>

> We are also going to have a session on Marriage and Family --

living

> with a " chronically ill " child. A psychologist will be leading

this

> one, and it should be really good.

>

> So.... the question is... what else??? Especially if we have to

> remove the Nutrition/Feeding Therapy sessions. What is important

to

> you all? What are we missing?

>

> Dale gave us a contact to have a speaker on ADD-ADHD, and we

> are going to do our best to arrange that speaker.

>

> Let's see what else. We hope to do the pool party again. And this

> year, I am rooting for a " Teen Room. " I want to set aside a room

at

> night for the teens to hang out, we'll rent a foosball table, TV

and

> X-Box, ping pong table, order pizza in, etc. Cross your fingers.

>

> The RSS adults hope to have a big turn out as well.

>

> Oh, and we hope to have a " decompensation " room -- a quiet room

> where parents can come and there will " experienced " RSS parents

> there who can help you decompress what you just heard in the

> sessions.

>

> What other presentations would you find helpful??? The open

> presentation spots are basically 90 minutes long. Katy and I have

> to have EVERYTHING nailed down no later than November 8th, when we

> fly to Chicago for a division director meeting. That is just 4

> weeks away, yee gads.

>

>