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Hello all

I understand that there are a few other folks here from New Jersey. Is

it acceptable practice to ask where you are? I'll start (have little

remaining internet paranoia!!!)

I'm in in the middle of the northern part of NJ. Most of my doctors are

affiliated with town Memorial Hospital (which now has a Children's

Hospital). The docs we see (or have appointments this century to see!)

are her priamary care pediatrician, a ped neurologist, a GI doc, a

genetecist, an endocrinologist and we have an appointment for a swallow

study and/or full eval at St. Joe's in Paterson. We are also in

Somerset County's EI program.

How about you all?

Jeanne

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Jeanne,

I have little to no internet fear. This may change when we move. But.

for now I am so far removed from the world that it doesn't bother me.

Right now we are in Anchorage, AK. But, we will be moving to MD soon.

For right now N. NJ seems close. We look at the map of the states and

every thing seems close...for now. We have just started down this

path as well. The only solid answer we have so far is that is

RSS, but no test have been done to prove this. Just his small size,

and his looks. We have on going doctor problems. My husband is in the

Air Force and our medical needs are " met " at the military clinic.

Worse then dealing with an HMO. We see a GI that is military, and our

ped. is military, but the Endo we saw last week was an outside

doctor...what a mess. We needed tests done, blood can only be drawn

at the military clinic. The endo wanted another CF test done...but

those CAN'T be done at the clinic. Like I said its a mess.

good luck

Cami

arie Mirabella wrote:

> Hello all

>

> I understand that there are a few other folks here from New

Jersey. Is

> it acceptable practice to ask where you are? I'll start (have

little

> remaining internet paranoia!!!)

>

> I'm in in the middle of the northern part of NJ. Most of my

doctors are

> affiliated with town Memorial Hospital (which now has a

Children's

> Hospital). The docs we see (or have appointments this century to

see!)

> are her priamary care pediatrician, a ped neurologist, a GI doc, a

> genetecist, an endocrinologist and we have an appointment for a

swallow

> study and/or full eval at St. Joe's in Paterson. We are also in

> Somerset County's EI program.

>

> How about you all?

>

> Jeanne

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Jeanne,

I live about 5 minutes from MMH. I live in Madison, which is the

next town over from town. In fact, I know the family that

donated the money for the Goryeb Children's Center. Their grandson

is a student at the private school where I teach. Where are you?

Jodi

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Jodi

I grew up in Newark (didn't everyone!) Now, I had thought that you

worked for magic (from your email address) but I guess that's not

possible if they are in ILL and you are in NJ... There are a couple of

you with magicrss in your emails, no???

I am in bridgewater now... although I hope to move to long hill within a

year or so. I chose madison, but peter (my husband) vetoed me. I do

love long hill though...

I really like that children's center... although it takes FOREVER to get

appointments... I guess when you are IN the system it moves more

quickly than when you are trying to get into the system.

Thanks for getting in touch. I'm sure we'll meet at some point...

Madison is less than 1/2 hour from here...

Jeanne

magicrss3 wrote:

>

> Jeanne,

>

> I live about 5 minutes from MMH. I live in Madison, which is the

> next town over from town. In fact, I know the family that

> donated the money for the Goryeb Children's Center. Their grandson

> is a student at the private school where I teach. Where are you?

>

> Jodi

>

>

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Jodi

Rosemarie hasn't been diagnosed with RSS (or anything else!) yet. I

know she has many of the signs and symptoms, so I'm here to get as much

info as I can. I am seeing many (MANY) docs in an effort to figure the

whole thing out.

If it turns out that she does have RSS, I'll certainly be posting here

to talk about RSS specialists.

Where in the city is she?

Jeanne

magicrss3 wrote:

>

> One more thing, Jeanne. If you are so close, why don't you switch

> over to Dr. Harbison? She is in NYC and she is an expert on RSS.

>

> Jodi

>

>

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Jeanne,

I do work for MAGIC. I am the Email Coordinator for the RSS

Division. is the Division Director, though.

I know exactly where Long Hill is. It's about 10 minutes from

here. Maybe someday we will meet! I used to go into that area a

lot, but now I work in Mountain Lakes, so I travel more in the

opposite direction.

I still think you should consider at least a consult with Dr. H.

That is a good system to get into, too. I love MMH as a local

hospital, though. Our pediatrician works out of there and we love

her. It's great for short stays like when Max has a stomach virus

and needs those couple of days for rehydration and acidosis.

Jodi

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maybe we can get some kind of NJ/NY to meet... a picnic or something

with the kids!

I'm impressed that you know about long hill. Even though it's right

there, in the middle of everything, most people think of either long

valley or far hills when they hear long hill, and have no idea that it's

just sandwhiched in there! It's funny too, because it is in morris

county, but the kids go to HS in somerset county... that always throws

folks too.

Anyway, I'm not there yet, but am so close to you!

Did you grow up in NJ?

Jeanne

magicrss3 wrote:

>

> Jeanne,

>

> I do work for MAGIC. I am the Email Coordinator for the RSS

> Division. is the Division Director, though.

>

> I know exactly where Long Hill is. It's about 10 minutes from

> here. Maybe someday we will meet! I used to go into that area a

> lot, but now I work in Mountain Lakes, so I travel more in the

> opposite direction.

>

> I still think you should consider at least a consult with Dr. H.

> That is a good system to get into, too. I love MMH as a local

> hospital, though. Our pediatrician works out of there and we love

> her. It's great for short stays like when Max has a stomach virus

> and needs those couple of days for rehydration and acidosis.

>

> Jodi

>

>

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Jeanne,

I grew up in South Orange. My parents moved to New Vernon/Harding

Township while I was in college in Atlanta. Now I am back in NJ

and, as you know, living in Madison.

As for a NY/NJ gathering, I would be all for it. We used to host

one here every fall and had quite an attendance. I wish my house

were bigger now so that I could do it again. Our yard is big

enough, but if it rains, things would be pretty tight. This was

supposed to be our 5 year house, then we were going to move to a

larger house. Along came Max and all the medical expenses and our

dreams flew out the window. Now we don't want to move because Jenna

is going to college in a year and we won't need the extra room. We

are comfortable and happy here.

When are you moving? At least maybe you and I can meet! Perhaps

Katy could come up, too, when she is going to visit her parents.

Jodi

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I grew up in Vailsburg. No doubt we did some sleighriding together at

cameron field or ate ice cream at grunings (on the hill??!!) I'm sure

we will meet!

jeanne

magicrss3 wrote:

>

> Jeanne,

>

> I grew up in South Orange. My parents moved to New Vernon/Harding

> Township while I was in college in Atlanta. Now I am back in NJ

> and, as you know, living in Madison.

>

> As for a NY/NJ gathering, I would be all for it. We used to host

> one here every fall and had quite an attendance. I wish my house

> were bigger now so that I could do it again. Our yard is big

> enough, but if it rains, things would be pretty tight. This was

> supposed to be our 5 year house, then we were going to move to a

> larger house. Along came Max and all the medical expenses and our

> dreams flew out the window. Now we don't want to move because Jenna

> is going to college in a year and we won't need the extra room. We

> are comfortable and happy here.

>

> When are you moving? At least maybe you and I can meet! Perhaps

> Katy could come up, too, when she is going to visit her parents.

>

> Jodi

>

>

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