help!

[Guest guest]

Dear Kate,

I think it may be beneficial to give your doctor a brochure IF you ask him

to look online to see other articles to support your medication failures. If

you share with him that you are in touch with Still's patients world wide

that have failed and then tried different biologics with success, do you

think he may listen? Maybe he will find something there at the International

Still's Disease Foundation site. It is www.stillsdisease.org

<http://www.stillsdisease.org/> and we do and Bob will send you brochures

to anywhere in the world that requests them. Simply email him at

Oldgoat378@... and give him your postal address and request for as

many as you wish to receive. Good luck dear and please let us know how you

fare.

If anyone has got any thoughts on how I can get the message across

I'd be really grateful. If anyone in the UK has gone through this or

has found some info to give to their GP, I'd also be really grateful.

If you think the brochures might be a good way forward,can they be

sent to us in the UK?

Best wishes to everyone

Kate (UK)

____________________________________________________________

Save on Cell Phones. Click Now!

http://thirdpartyoffers.netzero.net/TGL2241/fc/Ioyw6i4uMmK7f9GsOc8T18N14b1qWNG96\

mtHGR8cLVp4ZVXLktAqce/

[Guest guest]

Dear Kate,

I think it may be beneficial to give your doctor a brochure IF you ask him

to look online to see other articles to support your medication failures. If

you share with him that you are in touch with Still's patients world wide

that have failed and then tried different biologics with success, do you

think he may listen? Maybe he will find something there at the International

Still's Disease Foundation site. It is www.stillsdisease.org

<http://www.stillsdisease.org/> and we do and Bob will send you brochures

to anywhere in the world that requests them. Simply email him at

Oldgoat378@... and give him your postal address and request for as

many as you wish to receive. Good luck dear and please let us know how you

fare.

If anyone has got any thoughts on how I can get the message across

I'd be really grateful. If anyone in the UK has gone through this or

has found some info to give to their GP, I'd also be really grateful.

If you think the brochures might be a good way forward,can they be

sent to us in the UK?

Best wishes to everyone

Kate (UK)

____________________________________________________________

Save on Cell Phones. Click Now!

http://thirdpartyoffers.netzero.net/TGL2241/fc/Ioyw6i4uMmK7f9GsOc8T18N14b1qWNG96\

mtHGR8cLVp4ZVXLktAqce/

[Guest guest]

Kate 

 I went threw this my self here in the USA . what i did was two things first I

printi=ed off a lot of info I did find on the web and gave it to my doc then

asked them for a referal to a second doc just to make shure we were both on the

same page . well he would not give me one so in the end I did change to a new

doc and it was the best thing i did . it is not easy getting a doc to understand

when there not open to ideas or illness there closed off to and seconed it is

also hard to educate some one who is not open to learning about some thing they

may not belive in to begain with as was my case , both lead me to finding a new

doc and in the end it ws a blessing . the first change came in my primary doc

and then when he refered me to my rummy that set of the second change and now i

would be upset if i had to change again . now we do not always see eye to eye

but i know they both belive there is an illness called stills and one will treat

me for it and

the other knows it is out of his area of work but will fight to help me find

some one that will work with me

 it has not been easy and for me this was a 5 year road I travield to get here

so best of luck to you but never just give up always keep trying as we never knw

what may be the trigger that sets thig off in our favore

hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

[Guest guest]

Kate 

 I went threw this my self here in the USA . what i did was two things first I

printi=ed off a lot of info I did find on the web and gave it to my doc then

asked them for a referal to a second doc just to make shure we were both on the

same page . well he would not give me one so in the end I did change to a new

doc and it was the best thing i did . it is not easy getting a doc to understand

when there not open to ideas or illness there closed off to and seconed it is

also hard to educate some one who is not open to learning about some thing they

may not belive in to begain with as was my case , both lead me to finding a new

doc and in the end it ws a blessing . the first change came in my primary doc

and then when he refered me to my rummy that set of the second change and now i

would be upset if i had to change again . now we do not always see eye to eye

but i know they both belive there is an illness called stills and one will treat

me for it and

the other knows it is out of his area of work but will fight to help me find

some one that will work with me

 it has not been easy and for me this was a 5 year road I travield to get here

so best of luck to you but never just give up always keep trying as we never knw

what may be the trigger that sets thig off in our favore

hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

[Guest guest]

Kate 

 I went threw this my self here in the USA . what i did was two things first I

printi=ed off a lot of info I did find on the web and gave it to my doc then

asked them for a referal to a second doc just to make shure we were both on the

same page . well he would not give me one so in the end I did change to a new

doc and it was the best thing i did . it is not easy getting a doc to understand

when there not open to ideas or illness there closed off to and seconed it is

also hard to educate some one who is not open to learning about some thing they

may not belive in to begain with as was my case , both lead me to finding a new

doc and in the end it ws a blessing . the first change came in my primary doc

and then when he refered me to my rummy that set of the second change and now i

would be upset if i had to change again . now we do not always see eye to eye

but i know they both belive there is an illness called stills and one will treat

me for it and

the other knows it is out of his area of work but will fight to help me find

some one that will work with me

 it has not been easy and for me this was a 5 year road I travield to get here

so best of luck to you but never just give up always keep trying as we never knw

what may be the trigger that sets thig off in our favore

hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

[Guest guest]

Hi Kate,

I went through a few PCP docs before I found a Rheumy that believed in me,

and it was years he stood by me before we could properly diagnose Still's.

And like you, I'm going through treatment after treatment and nothing is

really working well for me, not enough to get me out of this flare.

All I can say is that you NEED a doc that believes in you, your disease, and

the fact that together you will come up with a treatment plan that works for

you eventually, but you both need to be committed to hanging in there while

you tweak doses, add things, try new things, etc.....

find a doc you can believe in and who believes in you.

hugs,

Jo

In a message dated 9/1/2008 8:49:38 A.M. Eastern Daylight Time,

Weekskate1979@... writes:

failed, he seems to have totally lost interest in me. He seems to

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

Hi Kate,

I went through a few PCP docs before I found a Rheumy that believed in me,

and it was years he stood by me before we could properly diagnose Still's.

And like you, I'm going through treatment after treatment and nothing is

really working well for me, not enough to get me out of this flare.

All I can say is that you NEED a doc that believes in you, your disease, and

the fact that together you will come up with a treatment plan that works for

you eventually, but you both need to be committed to hanging in there while

you tweak doses, add things, try new things, etc.....

find a doc you can believe in and who believes in you.

hugs,

Jo

In a message dated 9/1/2008 8:49:38 A.M. Eastern Daylight Time,

Weekskate1979@... writes:

failed, he seems to have totally lost interest in me. He seems to

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

Hi Kate,

I went through a few PCP docs before I found a Rheumy that believed in me,

and it was years he stood by me before we could properly diagnose Still's.

And like you, I'm going through treatment after treatment and nothing is

really working well for me, not enough to get me out of this flare.

All I can say is that you NEED a doc that believes in you, your disease, and

the fact that together you will come up with a treatment plan that works for

you eventually, but you both need to be committed to hanging in there while

you tweak doses, add things, try new things, etc.....

find a doc you can believe in and who believes in you.

hugs,

Jo

In a message dated 9/1/2008 8:49:38 A.M. Eastern Daylight Time,

Weekskate1979@... writes:

failed, he seems to have totally lost interest in me. He seems to

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

Look up GRASP. Hold on, and I'll do it for you ... ... It's www.grasp.org I know they have adult groups, and I think they've got teen ones too. If anyone will know, it'll be (the head of it, MJ Carley).

Also, there may be parent support groups near you.

We all know about rough days, so you aren't alone.

Love,

Francine

In a message dated 9/3/2008 1:26:51 A.M. Eastern Daylight Time, fdabull@... writes:

I am the mom of a 13 year girl with Aspergers. Everyday at some point or another is a major struggle, for her and I both. We (my hubby and myself) are desperatly seeking a teen Aspie support group for her. She really needs the support from those who can completly understand her. Any help at all would be appreciated. We are located in Lomita, California. Thank you so much... It's only a deal if it's where you want to go. Find your travel deal here.

[Guest guest]

Hi y- I am also the mother of a 13 year old Aspie girl. We are in Northern California. My suggestion would be to contact UCLA and find out what programs they have, or else contact USC's Keck School of Medicine. Many medical schools have programs that your daughter might be able to participate in. If you want, you can also email me directly and we can compare notes. :)EllenFrom: y Da Bull <fdabull@...>Subject: HELP!Autism and Aspergers Treatment Date: Monday, September 1, 2008, 7:17 AMI am the mom of a 13 year girl with Aspergers. Everyday at some point or another is a major struggle, for her and

I both. We (my hubby and myself) are desperatly seeking a teen Aspie support group for her. She really needs the support from those who can completly understand her. Any help at all would be appreciated. We are located in Lomita, California. Thank you so much...------------------------------------

[Guest guest]

You will want to contact medical/therapy offices that deal with autism, they would most likely know who or what is going on in your area.

You might also consider getting her a paid companion to take her out once a week or whatever you can afford to have a break.

)

From: y Da Bull <fdabull@...>Subject: HELP!Autism and Aspergers Treatment Date: Monday, September 1, 2008, 8:17 AM

I am the mom of a 13 year girl with Aspergers. Everyday at some point or another is a major struggle, for her and I both. We (my hubby and myself) are desperatly seeking a teen Aspie support group for her. She really needs the support from those who can completly understand her. Any help at all would be appreciated. We are located in Lomita, California. Thank you so much...

[Guest guest]

thanks for the URL. the magazine looks great.

Lyn

Re: HELP!

Look up GRASP. Hold on, and I'll do it for you ... ... It's www.grasp.org I know they have adult groups, and I think they've got teen ones too. If anyone will know, it'll be (the head of it, MJ Carley).

Also, there may be parent support groups near you.

We all know about rough days, so you aren't alone.

Love,

Francine

In a message dated 9/3/2008 1:26:51 A.M. Eastern Daylight Time, fdabull (DOT) com writes:

I am the mom of a 13 year girl with Aspergers. Everyday at some point or another is a major struggle, for her and I both. We (my hubby and myself) are desperatly seeking a teen Aspie support group for her. She really needs the support from those who can completly understand her. Any help at all would be appreciated. We are located in Lomita, California. Thank you so much...

It's only a deal if it's where you want to go. Find your travel deal here.

[Guest guest]

Hello Marie,

Although it may still be viable, I would suggest you ask for a new

culture.

Kombucha microflora do not particularly like the cold and it could

take a good long while for the yeasts and bacteria in the culture you

have stored to regain enough balance to brew properly.

It is always best to store a Kombucha culture in a glass container

with finished KT at room temperature and covered with an air

permeable, tightly woven cloth held on securely with something like a

rubber band.

There are frequently people on this list who have extras and who will

gladly mail them out for cost of postage and perhaps a bit for handling.

I frequently do myself, but am in between SCOBYs bring properly formed

just now having sent two out in the past week and a half....

Gayle

On Feb 6, 2009, at 11:12 AM, Marie-Ange Bovee wrote:

>

> Hello out there.

>

> Several years ago someone gave me a Kombucha which has been living

> in a back corner of my fridge in a cup of black tea (no sugar)

> covered with saran wrap.

> Is it still good?

> Can I now actually brew it and drink of it?

> Or is it now poisonous and I should get a new growth.

>

> Enjoy the day,

>

> Mrngbird.

>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Thanks for your reply.

Good night,

Marie-Ange.

>

> >

> > Hello out there.

> >

> > Several years ago someone gave me a Kombucha which has

> been living

> > in a back corner of my fridge in a cup of black tea

> (no sugar)

> > covered with saran wrap.

> > Is it still good?

> > Can I now actually brew it and drink of it?

> > Or is it now poisonous and I should get a new growth.

> >

> > Enjoy the day,

> >

> > Mrngbird.

> >

> >

> >

> >

> >

> > ------------------------------------

> >

> >

[Guest guest]

My first assumption would be that something happened at camp. Liam may be

reacting to some sort of abuse ... either from the staff or another camper.

I'd check that out first.

granny

On Fri, Jul 10, 2009 at 12:29 PM, mom2lfm <Mom2lfm@...> wrote:

>

>

>

> Liam's first (and last) day of camp was Monday. He was supposed to go after

> school, but got very angry and threw chairs. I'm not 100% sure what

> happened. Liam's not very verbal. He's never shown aggressive or violent

> behavior before. He had a good day at school beforehand. The folks at school

> were stunned because, although very stubborn he has never shown them

> behavior like that. I spoke with the school psychologist who agreed to speak

> with him, but he was very surprised at the incident. The camp was at the

> same place as his weekend rec program that I thought he loved. He's been

> going there for the past three years. They have had some staff turnover

> recently, but nothing else has changed. His babysitters and I have never

> seen this kind of behavior before either. When I told him that he can't go

> there anymore, he said, " Good. "

>

> Luckily his regular after school babysitter is available and will take care

> of him instead. She's very strict with him so he won't be getting an easier

> time. I'd like to get him seen by a psychologist or psychiatrist to try and

> figure out what caused this change and try and make sure it never happens

> again. I called the developmental pediatrician's office, but unless it's ADD

> she isn't seeing new patients. He's 'new' because she hasn't seem him in

> quite a while. They referred me to the Child Psychiatry department. They

> can't see him until mid September so they referred me to another place. They

> don't feel they can help since he's not very verbal. Does anyone else have a

> child who isn't very verbal and needs help? If so how do they manage?

>

> I need to know if something's bothering him (about the camp?) or anything

> else. I really don't think it was physical abuse - not a scratch on him, but

> maybe someone hurt his feelings. If this keeps up medication will be in his

> future, because Liam has Bam-bam strength. At 11 he's already stronger than

> I am. Good thing he doesn't know it.

>

> Any advice?

>

> Kathy, Liam's mom (11,DS,Diabetes, asthma)

>

>

>

--

Not for ourselves but for the whole world we were born

[Guest guest]

I would worry about some kind of bullying or other abuse. Although I would

not wait for the psychologists appointments to check it out. Can you check

with your Ds clinic for the social worker or case worker to give you some

recommendations of a specialist he could speak with? Maybe the DCS can

help. That may be a good route because if something is suspected they can

investigate the camp/school. I am not sure I would trust the school to be

entirely truthful if it happened on their watch.

Nolan-6

Phoebe Ds & Cf-4

Lipstick

_____

From: [mailto: ] On Behalf

Of mom2lfm

Sent: Friday, July 10, 2009 12:29 PM

Subject: Help!

Liam's first (and last) day of camp was Monday. He was supposed to go after

school, but got very angry and threw chairs. I'm not 100% sure what

happened. Liam's not very verbal. He's never shown aggressive or violent

behavior before. He had a good day at school beforehand. The folks at school

were stunned because, although very stubborn he has never shown them

behavior like that. I spoke with the school psychologist who agreed to speak

with him, but he was very surprised at the incident. The camp was at the

same place as his weekend rec program that I thought he loved. He's been

going there for the past three years. They have had some staff turnover

recently, but nothing else has changed. His babysitters and I have never

seen this kind of behavior before either. When I told him that he can't go

there anymore, he said, " Good. "

Luckily his regular after school babysitter is available and will take care

of him instead. She's very strict with him so he won't be getting an easier

time. I'd like to get him seen by a psychologist or psychiatrist to try and

figure out what caused this change and try and make sure it never happens

again. I called the developmental pediatrician's office, but unless it's ADD

she isn't seeing new patients. He's 'new' because she hasn't seem him in

quite a while. They referred me to the Child Psychiatry department. They

can't see him until mid September so they referred me to another place. They

don't feel they can help since he's not very verbal. Does anyone else have a

child who isn't very verbal and needs help? If so how do they manage?

I need to know if something's bothering him (about the camp?) or anything

else. I really don't think it was physical abuse - not a scratch on him, but

maybe someone hurt his feelings. If this keeps up medication will be in his

future, because Liam has Bam-bam strength. At 11 he's already stronger than

I am. Good thing he doesn't know it.

Any advice?

Kathy, Liam's mom (11,DS,Diabetes, asthma)

[Guest guest]

If you feel that he needs to be seen very soon (sooner than mid-september) get

ahold of a social worker and they will be able to get you in sooner. Back last

November I had some serious mental health issues and my regular doctor said it

was too much for him to handle so he referred me to a psychiatrist and when I

initially called to set up an appointment they told me that I couldn't get in

for 3 1/2 months. I called back my regular doctor they got me in touch with a

social worker and she got me in within a week. They just have some special

magic or something but I got in and got the proper medications to help me out!!

With we are able to see his developmental specialist she specializes in

kids with special needs and mental health!! Lucky us!!

Good Luck!

Help!

Liam's first (and last) day of camp was Monday. He was supposed to go after

school, but got very angry and threw chairs. I'm not 100% sure what happened.

Liam's not very verbal. He's never shown aggressive or violent behavior before.

He had a good day at school beforehand. The folks at school were stunned

because, although very stubborn he has never shown them behavior like that. I

spoke with the school psychologist who agreed to speak with him, but he was very

surprised at the incident. The camp was at the same place as his weekend rec

program that I thought he loved. He's been going there for the past three years.

They have had some staff turnover recently, but nothing else has changed. His

babysitters and I have never seen this kind of behavior before either. When I

told him that he can't go there anymore, he said, " Good. "

Luckily his regular after school babysitter is available and will take care of

him instead. She's very strict with him so he won't be getting an easier time.

I'd like to get him seen by a psychologist or psychiatrist to try and figure out

what caused this change and try and make sure it never happens again. I called

the developmental pediatrician's office, but unless it's ADD she isn't seeing

new patients. He's 'new' because she hasn't seem him in quite a while. They

referred me to the Child Psychiatry department. They can't see him until mid

September so they referred me to another place. They don't feel they can help

since he's not very verbal. Does anyone else have a child who isn't very verbal

and needs help? If so how do they manage?

I need to know if something's bothering him (about the camp?) or anything

else. I really don't think it was physical abuse - not a scratch on him, but

maybe someone hurt his feelings. If this keeps up medication will be in his

future, because Liam has Bam-bam strength. At 11 he's already stronger than I

am. Good thing he doesn't know it.

Any advice?

Kathy, Liam's mom (11,DS,Diabetes, asthma)

[Guest guest]

Thanks /  I live in NYC.  We have no DS clinic here.    Hard to

believe, but true. I'd need to take a road trip and take him to Philadelphia or

Baltimore for actual DS expertise.  The local children's hospital hasn't been

much help, either.

Help!

 

Liam's first (and last) day of camp was Monday. He was supposed to go after

school, but got very angry and threw chairs. I'm not 100% sure what happened.

Liam's not very verba

l. He's never shown aggressive or violent behavior before. He had a good day at

school beforehand. The folks at school were stunned because, although very

stubborn he has never shown them behavior like that. I spoke with the school

psychologist who agreed to speak with him, but he was very surprised at the

incident. The camp was at the same place as his weekend rec program that I

thought he loved. He's been going there for the past three years. They have had

some staff turnover recently, but nothing else has changed. His babysitters and

I have never seen this kind of behavior before either. When I told him that he

can't go there anymore, he said, " Good. "

Luckily his regular after school babysitter is available and will take care of

him instead. She's very strict with him so he won't be getting an easier time.

I'd like to get him seen by a psychologist or psychiatrist to try and figure out

what caused this change and try and make sure it never happens again. I called

the developmental pediatrician's office, but unless it's ADD she isn't seeing

new patients. He's 'new' because she hasn't seem him in quite a while. They

referred me to the Child Psychiatry department. They can't see him until mid

September so they referred me to another place. They don't feel they can help

since he's not very verbal. Does anyone else have a child who isn't very verbal

and needs help? If so how do they manage?

I need to know if something's bothering him (about the camp?) or anything else.

I really

don't think it was physical abuse - not a scratch on him, but maybe someone hurt

his feelings. If this keeps up medication will be in his future, because Liam

has Bam-bam strength. At 11 he's already stronger than I am. Good thing he

doesn't know it.

Any advice?

Kathy, Liam's mom (11,DS,Diabetes, asthma)

[Guest guest]

Thanks Granny.? That's was my first thouht.? I think it's really me who needs

counseling.? How can I give him the support to handle it?? Although I realize

that violence is not the answer, there's a part of me that's happy that he

wouldn't passively except treatment he felt he didn't deserve.? Then there's the

issue that I don't want to fight to get him back in, since I wouldn't trust them

again with my treasure.

Kathy, Liam's mom

Re: Help!

My first assumption would be that something happened at camp. Liam may be

reacting to some sort of abuse ... either from the staff or another camper.

I'd check that out first.

granny

On Fri, Jul 10, 2009 at 12:29 PM, mom2lfm <Mom2lfm@...> wrote:

>

>

>

> Liam's first (and last) day of camp was Monday. He was supposed to go after

> school, but got very angry and threw chairs. I'm not 100% sure what

> happened. Liam's not very verbal. He's never shown aggressive or violent

> behavior before. He had a good day at school beforehand. The folks at school

> were stunned because, although very stubborn he has never shown them

> behavior like that. I spoke with the school psychologist who agreed to speak

> with him, but he was very surprised at the incident. The camp was at the

> same place as his weekend rec program that I thought he loved. He's been

> going there for the past three years. They have had some staff turnover

> recently, but nothing else has changed. His babysitters and I have never

> seen this kind of behavior before either. When I told him that he can't go

> there anymore, he said, " Good. "

>

> Luckily his regular after school babysitter is available and will take care

> of him instead. She's very strict with him so he won't be getting an easier

> time. I'd like to get him seen by a psychologist or psychiatrist to try and

> figure out what caused this change and try and make sure it never happens

> again. I called the developmental pediatrician's office, but unless it's ADD

> she isn't seeing new patients. He's 'new' because she hasn't seem him in

> quite a while. They referred me to the Child Psychiatry department. They

> can't see him until mid September so they referred me to another place. They

> don't feel they can help since he's not very verbal. Does anyone else have a

> child who isn't very verbal and needs help? If so how do they manage?

>

> I need to know if something's bothering him (about the camp?) or anything

> else. I really don't think it was physical abuse - not a scratch on him, but

> maybe someone hurt his feelings. If this keeps up medication will be in his

> future, because Liam has Bam-bam strength. At 11 he's already stronger than

> I am. Good thing he doesn't know it.

>

> Any advice?

>

> Kathy, Liam's mom (11,DS,Diabetes, asthma)

>

>

>

--

Not for ourselves but for the whole world we were born

[Guest guest]

These are ones all in the NE area. HTH:

Connecticut:

Down Syndrome Program

Division of Human Genetics

CT Children's Medical Center <http://www.ccmckids.org>

65 Kane Street

West Hartford, CT

Phone: 860-523-6464

Director: M. Greenstein, MD

Delaware:

Down Syndrome Clinic

Nemours/Alfred duPont <http://www.nemours.org/hospital/de/aidhc.html>

Hospital for Children

Genetic Dept.

1600 Rockland Road

Wilmington, DE

Phone: 302-651-5916

land:

Down Syndrome Clinic

The Kennedy <http://www.kennedykrieger.org/kki_cp.jsp?pid=1399> Krieger

Institute

707 North Broadway

Baltimore, MD

Phone: 410-502-8839

Massachusetts:

Down Syndrome Program

Children's Hospital <http://www.childrenshospital.org>

300 Longwood Avenue

Boston, MA

Phone: 617-355-2209

Down Syndrome Clinics for Adults and Adolescents

Mass. General Hospital

Yawkey Center for Outpatient Care, Suite 6C

Boston, MA

Phone: 617-726-1561

New Hampshire:

Child Development Program

Children's

<http://www.dhmc.org/webpage.cfm?site_id=2 & org_id=517 & gsec_id=0 & sec_id=0 & ite

m_id=26036> Hospital at Dartmouth

One Medical Center Drive

Lebanon, NH

Phone: 603-650-7884

Crotched Mountain Developmental

Pediatrics Clinic

Crotched Mountain Outpatient <http://www.crotchedmountain.org> Services

One Verney Drive

Greenfield, NH

Phone: 603-547-3311, ext. 360

New Jersey:

Developmental Disabilities Clinic

town <http://www.morristownmemorialhospital.org/en/goryeb/> Memorial

Hospital

100 Madison Avenue

town, NJ

Phone: 201-971-4095

The Judy Center for Down Syndrome

Hackensack University Medical Center

30 Prospect Ave

Hackensack, NJ

Phone: 201-996-JUDY

Child Development

K.

<http://www.khovnanianchildrenshospital.com/index.cfm/Services/Pediatric/chi

lddev.cfm> Hovnanian Children's Hospital

1944 Rte. 33 Suite 101-A

Neptune, NJ

Phone: 732-776-4178

Developmental Disabilities <http://www.ddha.com> Health Alliance

1285 Broad Street

Bloomfield, NJ

Phone: 973-338-4200

New York:

Warner, M.D. Center for Children with Special Needs

Women <http://www.wchob.org/services/services_display.asp?SID=258 & CID=9> &

Children's Hospital of Buffalo

219 Street

Buffalo, NY

Phone: 716-878-1260

Rhode Island:

Children's <http://www.lifespan.org/hch/services/neuro_cntr/>

Neurodevelopment Center

Hasbro Children's Hospital

593 Eddy Street

Providence, RI

Phone: 401-444-4000

Pennsylvania:

Down Syndrome Center <http://www.chp.edu/CHP/downsyndrome>

Children's Hospital of Pittsburgh

Children's Hospital Drive

45th St. & Penn Ave.

Pittsburgh, PA

Phone: 412-692-7963

Trisomy <http://www.chop.edu/consumer/jsp/division/service.jsp?id=76670> 21

Program

Children's Hospital of Philadelphia

34th Street and Civic Center Boulevard

Philadelphia, PA

Phone: 267-426-5283

Eastern Penn. Down Syndrome <http://www.epdsc.org> Center

PO Box 60

6900 Hamilton Blvd.

Trexlertown, PA

Phone: 610-402-0184

Dr. Gertrude A. <http://www.drbarbercenter.org> Barber Center

136 East Avenue

Erie, PA

Phone: 814-453-7661

Vermont:

Adult Down Syndrome Center

University of Vermont College of Medicine <http://www.med.uvm.edu/>

Fletcher Health Care

Burlington, VT

Phone: 802-656-3655

Director: E. Hopkins, <mailto:william.hopkins@...> MD

Nolan-6

Phoebe Ds & Cf-4

Lipstick

_____

From: Dinkins-Borkowski [mailto:julie@...]

Sent: Saturday, July 11, 2009 12:09 PM

'Mom2lfm@...'

Subject: RE: Help!

I found these, (NY is under the NJ ones):

Child Development Center

town Memorial Hospital

100 Madison Avenue

town , NJ 07960

973-971-5227

The Judy Center For Down Syndrome

Hackensack University Medical Center

30 Prospect Ave.

Hackensack , NJ 07601

201-996-5839

Schneider Children's Hospital

Developmental & Behavioral Pediatrics

1983 Marcus Avenue, Suite 130

Lake Success , NY 11042

516-802-6100

Down Syndrome Program

Warner Rehabilitation Center

Women & Children's Hospital of Buffalo

219 Street

Buffalo , NY 14222

716-888-1300

Nolan-6

Phoebe Ds & Cf-4

Lipstick

_____

From: [mailto: ] On Behalf

Of Mom2lfm@...

Sent: Saturday, July 11, 2009 6:15 AM

julie@...;

Subject: Re: Help!

Thanks / I live in NYC. We have no DS clinic here. Hard to

believe, but true. I'd need to take a road trip and take him to Philadelphia

or Baltimore for actual DS expertise. The local children's hospital hasn't

been much help, either.

Help!

Liam's first (and last) day of camp was Monday. He was supposed to go after

school, but got very angry and threw chairs. I'm not 100% sure what

happened. Liam's not very verba

l. He's never shown aggressive or violent behavior before. He had a good day

at school beforehand. The folks at school were stunned because, although

very stubborn he has never shown them behavior like that. I spoke with the

school psychologist who agreed to speak with him, but he was very surprised

at the incident. The camp was at the same place as his weekend rec program

that I thought he loved. He's been going there for the past three years.

They have had some staff turnover recently, but nothing else has changed.

His babysitters and I have never seen this kind of behavior before either.

When I told him that he can't go there anymore, he said, " Good. "

Luckily his regular after school babysitter is available and will take care

of him instead. She's very strict with him so he won't be getting an easier

time. I'd like to get him seen by a psychologist or psychiatrist to try and

figure out what caused this change and try and make sure it never happens

again. I called the developmental pediatrician's office, but unless it's ADD

she isn't seeing new patients. He's 'new' because she hasn't seem him in

quite a while. They referred me to the Child Psychiatry department. They

can't see him until mid September so they referred me to another place. They

don't feel they can help since he's not very verbal. Does anyone else have a

child who isn't very verbal and needs help? If so how do they manage?

I need to know if something's bothering him (about the camp?) or anything

else. I really

don't think it was physical abuse - not a scratch on him, but maybe someone

hurt his feelings. If this keeps up medication will be in his future,

because Liam has Bam-bam strength. At 11 he's already stronger than I am.

Good thing he doesn't know it.

Any advice?

Kathy, Liam's mom (11,DS,Diabetes, asthma)

[Guest guest]

Thanks .  Sneider's was the one that couldn't/wouldn't see us (and it's

certainly not a DS clinic -- many of the professionals have told me that I know

more about DS than they do.)  and Buffalo is 8+ hours away.  I don't know if

the New Jersey centers are ok, but I'm pretty sure we wouldn't have insurance

coverage for them anyway.

Help!

 

Liam's first (and last) day of camp was Monday. He was supposed to

go after school, but got very angry and threw chairs. I'm not 100% sure what

happened. Liam's not very verba

l. He's never shown aggressive or violent behavior before. He had a good day at

school beforehand. The folks at school were stunned because, although very

stubborn he has never shown them behavior like that. I spoke with the school

psychologist who agreed to speak with him, but he was very surprised at the

incident. The camp was at the same place as his weekend rec program that I

thought he loved. He's been going there for the past three years. They have had

some staff turnover recently, but nothing else has changed. His babysitters and

I have never seen this kind of behavior before either. When I told him that he

can't go there anymore, he said, " Good. "

Luckily his regular after school babysitter is available and will take care of

him instead. She's very strict with him so he won't be getting an easier time.

I'd like to get him seen by a psychologist or psychiatrist to try and figure out

what caused this change and try and make sure it never happens again. I called

the developmental pediatrician's office, but unless it's ADD she isn't seeing

new patients. He's 'new' because she hasn't seem him in quite a while. They

referred me to the Child Psychiatry department. They can't see him until mid

September so they referred me to another place. They don't feel they can help

since he's not very verbal. Does anyone else have a child who isn't very verbal

and needs help? If so

how do they manage?

I need to know if something's bothering him (about the camp?) or anything else.

I really

don't think it was physical abuse - not a scratch on him, but maybe someone hurt

his feelings. If this keeps up medication will be in his future, because Liam

has Bam-bam strength. At 11 he's already stronger than I am. Good thing he

doesn't know it.

Any advice?

Kathy, Liam's mom (11,DS,Diabetes, asthma)

[Guest guest]

I don't know if this would help at all but you might look at some Colleges or a

University.  I know that when I was new at this and Alden was young, I did some

checking around and spoke via email to someone at Loyola College in land.

 It had to do with speech/path. but I received a very nice LONG letter of

recommendations, help, guidance just by asking. It was invaluble information and

it didn't cost me a dime.

Sometimes you may find a sympathetic and highly trained person at the Graduate

level or above that is able to guide you to a solution.  I wouldn't rule it

out.

Kiersten

From: Mom2lfm@... <Mom2lfm@...>

Subject: Re: Help!

julie@...,

Date: Sunday, July 12, 2009, 6:25 AM

Thanks .  Sneider's was the one that couldn't/wouldn' t see us (and

it's certainly not a DS clinic -- many of the professionals have told me that I

know more about DS than they do.)  and Buffalo is 8+ hours away.  I don't know

if the New Jersey centers are ok, but I'm pretty sure we wouldn't have insurance

coverage for them anyway.

Help!

 

Liam's first (and last) day of camp was Monday. He was supposed to

go after school, but got very angry and threw chairs. I'm not 100% sure what

happened. Liam's not very verba

l. He's never shown aggressive or violent behavior before. He had a good day at

school beforehand. The folks at school were stunned because, although very

stubborn he has never shown them behavior like that. I spoke with the school

psychologist who agreed to speak with him, but he was very surprised at the

incident. The camp was at the same place as his weekend rec program that I

thought he loved. He's been going there for the past three years. They have had

some staff turnover recently, but nothing else has changed. His babysitters and

I have never seen this kind of behavior before either. When I told him that he

can't go there anymore, he said, " Good. "

Luckily his regular after school babysitter is available and will take care of

him instead. She's very strict with him so he won't be getting an easier time.

I'd like to get him seen by a psychologist or psychiatrist to try and figure out

what caused this change and try and make sure it never happens again. I called

the developmental pediatrician' s office, but unless it's ADD she isn't seeing

new patients. He's 'new' because she hasn't seem him in quite a while. They

referred me to the Child Psychiatry department. They can't see him until mid

September so they referred me to another place. They don't feel they can help

since he's not very verbal. Does anyone else have a child who isn't very verbal

and needs help? If so

how do they manage?

I need to know if something's bothering him (about the camp?) or anything else.

I really

don't think it was physical abuse - not a scratch on him, but maybe someone hurt

his feelings. If this keeps up medication will be in his future, because Liam

has Bam-bam strength. At 11 he's already stronger than I am. Good thing he

doesn't know it.

Any advice?

Kathy, Liam's mom (11,DS,Diabetes, asthma)

[Guest guest]

I am sorry to hear that. I hope you are able to find help for your son on

your own. I pray that it can be resolved and that he is ok.

I did want to pass on what another mother mentioned about one clinic in your

area that she has used. Please just delete if this is not something that

would help your family. I promise this will be the last recommendation.

Across the river but worth the trip.......if you go, be specific and ask

for Dr. Fred ONLY.

The Judy Center for Down Syndrome

Hackensack University Medical Center

30 Prospect Ave

Hackensack, NJ

Phone: 201-996-JUDY

Dr. Fred

ALison

> Dawn

>

> Mom to , almost 3

Nolan-6

Phoebe Ds & Cf-4

Lipstick

_____

From: [mailto: ] On Behalf

Of Mom2lfm@...

Sent: Sunday, July 12, 2009 7:25 AM

julie@...;

Subject: Re: Help!

Thanks . Sneider's was the one that couldn't/wouldn't see us (and it's

certainly not a DS clinic -- many of the professionals have told me that I

know more about DS than they do.) and Buffalo is 8+ hours away. I don't

know if the New Jersey centers are ok, but I'm pretty sure we wouldn't have

insurance coverage for them anyway.

Help!

Liam's first (and last) day of camp was Monday. He was supposed to

go after school, but got very angry and threw chairs. I'm not 100% sure what

happened. Liam's not very verba

l. He's never shown aggressive or violent behavior before. He had a good day

at school beforehand. The folks at school were stunned because, although

very stubborn he has never shown them behavior like that. I spoke with the

school psychologist who agreed to speak with him, but he was very surprised

at the incident. The camp was at the same place as his weekend rec program

that I thought he loved. He's been going there for the past three years.

They have had some staff turnover recently, but nothing else has changed.

His babysitters and I have never seen this kind of behavior before either.

When I told him that he can't go there anymore, he said, " Good. "

Luckily his regular after school babysitter is available and will take care

of him instead. She's very strict with him so he won't be getting an easier

time. I'd like to get him seen by a psychologist or psychiatrist to try and

figure out what caused this change and try and make sure it never happens

again. I called the developmental pediatrician's office, but unless it's ADD

she isn't seeing new patients. He's 'new' because she hasn't seem him in

quite a while. They referred me to the Child Psychiatry department. They

can't see him until mid September so they referred me to another place. They

don't feel they can help since he's not very verbal. Does anyone else have a

child who isn't very verbal and needs help? If so

how do they manage?

I need to know if something's bothering him (about the camp?) or anything

else. I really

don't think it was physical abuse - not a scratch on him, but maybe someone

hurt his feelings. If this keeps up medication will be in his future,

because Liam has Bam-bam strength. At 11 he's already stronger than I am.

Good thing he doesn't know it.

Any advice?

Kathy, Liam's mom (11,DS,Diabetes, asthma)

[Guest guest]

I agree. I've been taking to a university hospital since she was an

infant. They are very knowledgable about Down's Syndrome. Our PCP even has

an adult son who has Down's.

granny

On Sun, Jul 12, 2009 at 11:16 AM, Kiersten <kiersten5560@...> wrote:

>

>

> I don't know if this would help at all but you might look at some Colleges

> or a University. I know that when I was new at this and Alden was young, I

> did some checking around and spoke via email to someone at Loyola College in

> land. It had to do with speech/path. but I received a very nice LONG

> letter of recommendations, help, guidance just by asking. It was invaluble

> information and it didn't cost me a dime.

> Sometimes you may find a sympathetic and highly trained person at the

> Graduate level or above that is able to guide you to a solution. I wouldn't

> rule it out.

> Kiersten

>

>

>

> From: Mom2lfm@... <Mom2lfm%40aol.com> <Mom2lfm@...<Mom2lfm%40aol.com>

> >

> Subject: Re: Help!

> julie@... <julie%40borkowskifamily.com>,

> <%40>

> Date: Sunday, July 12, 2009, 6:25 AM

>

> Thanks . Sneider's was the one that couldn't/wouldn' t see us (and

> it's certainly not a DS clinic -- many of the professionals have told me

> that I know more about DS than they do.) and Buffalo is 8+ hours away. I

> don't know if the New Jersey centers are ok, but I'm pretty sure we wouldn't

> have insurance coverage for them anyway.

>

> Help!

>

>

>

> Liam's first (and last) day of camp was Monday. He was supposed to

>

> go after school, but got very angry and threw chairs. I'm not 100% sure

> what happened. Liam's not very verba

>

> l. He's never shown aggressive or violent behavior before. He had a good

> day at school beforehand. The folks at school were stunned because, although

> very stubborn he has never shown them behavior like that. I spoke with the

> school psychologist who agreed to speak with him, but he was very surprised

> at the incident. The camp was at the same place as his weekend rec program

> that I thought he loved. He's been going there for the past three years.

> They have had some staff turnover recently, but nothing else has changed.

> His babysitters and I have never seen this kind of behavior before either.

> When I told him that he can't go there anymore, he said, " Good. "

>

> Luckily his regular after school babysitter is available and will take care

> of him instead. She's very strict with him so he won't be getting an easier

> time. I'd like to get him seen by a psychologist or psychiatrist to try and

> figure out what caused this change and try and make sure it never happens

> again. I called the developmental pediatrician' s office, but unless it's

> ADD she isn't seeing new patients. He's 'new' because she hasn't seem him in

> quite a while. They referred me to the Child Psychiatry department. They

> can't see him until mid September so they referred me to another place. They

> don't feel they can help since he's not very verbal. Does anyone else have a

> child who isn't very verbal and needs help? If so

>

> how do they manage?

>

> I need to know if something's bothering him (about the camp?) or anything

> else. I really

>

> don't think it was physical abuse - not a scratch on him, but maybe someone

> hurt his feelings. If this keeps up medication will be in his future,

> because Liam has Bam-bam strength. At 11 he's already stronger than I am.

> Good thing he doesn't know it.

>

> Any advice?

>

> Kathy, Liam's mom (11,DS,Diabetes, asthma)

>

>

[Guest guest]

Some of the most simple falls could cause a break.  You never know.  Is there

swelling all the way around her foot or is it located to one area?  Or, is there

still no swelling or bruising of any kind? If she is crying at touch/ and not

putting weight on it, she needs to be seen.  i cannot imagine that after

sleeping all night that she would still be crying about it if it was not hurt in

some way. Please let us know how you are doing. I am so very sorry things are

that tight.  Is there anyone you could call to help you out?  

Kiersten

From: Dinkins-Borkowski <julie@...>

Subject: help!

Date: Monday, August 17, 2009, 2:58 PM

 

HELP!

Last night phoebe slid gently down off the couch and started crying when she

stepped on her foot. I could find nothing wrong with it. It was right at

bed time so I let her sleep with me to watch her. No problems at night, but

when she got up and tried to put weight on it, she screamed again. She is

still learning to walk so she just toddles around. I cannot imagine her

breaking a bone by just stepping on it.

I pressed on the top and sides and she pulls back and cries, but there is no

swelling or purpleness or any signs something bit her.

I am at a loss! I am putting ice on it, which she hates and I have to sit

on the couch with her and cannot do anything else. I gave her some advil,

but nothing helps. Right now we are so broke I cannot even put gas in the

car until payday Friday. But not to worry I am raiding the coin jars for

the gas money to get her to the ER! Whatever works, right?

I just wanted to know if anyone else has experience this. I do not know if

it has something to do with the Down's syndrome or with her cystic fibrosis.

I hope someone can help.

Nolan-6

Phoebe Ds & Cf-4

Lipstick