Re: Charge-Debbie-eating disorders

[Guest guest]

Debbie, as a follow up to , I'm wondering about Kennedy-Krieger. You have

probably investigated that option, but since it is on the east coast, I thought

it might be helpful. Didn't some children with CHARGE go there before for the

feeding issues clinics? Maybe you have already ruled it out, but I wanted to

mention it in case you had not known of it.

Charge-Debbie-eating disorders

Hi Debbie,

I feel like I'm working (looking) backwards here. You are in Jersey? New

York/Long Island

within easy reach?

I'll look in your area for a specialty clinic, if you give me the right area

to search. (the closest

metro area.)

Also-I could find one of the places Toomey has spoken at in the past year if

you want,

and you could try calling them. One was an Illinois chapter of Easter

Seals. Perhaps

they could tell you how they reached her. Or-we can just find one

well-recognized in your

area.

Let me know which route to follow.

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

- I am in Northern NJ. I have been everywhere and nowhere have I

found a place who can deal with the emotional and psychological aspects of

eating. wants to eat but there are underlying experiences etc.

which are stopping him. He can't be called a behavioral problem because the

behaviors are definitely stemming from the fact that 10 years have gone by

and he has developed an anxiety towards eating although he can physically do

it now. I appreciate anything you can dig up. I have been to most of the

major feeding clinics around me. I am specifically looking for a

psychologist who deals with feeding problems. Thanks for your help, I'll be

looking forward to see what you come up with. Also, sure, if you could find

where Toomey was last that may be helpful.

- I have thought about Kennedy Krieger. We were there a long time ago

and they couldn't help us because they said 's problems weren't

behavioral, they were very physical - he couldn't swallow. I know they deal

with behavioral problems with eating but I am unsure of the sort of

behavioral problems. I may contact them just to see, but my gut is that it

still isn't what we need. definitely has underlying trauma in

regards to feeding and it's related to the home environment. He is

insecure, doesn't trust me etc., set in his ways about it and I am sure he

had bad experiences here at home related to illness and eating. We never

forced him to eat but he has had major illnesses while he was becoming oral

and then stopped eating and I know it is a connection between home because

he is eating at school. When we are out to dinner he tries foods. We were

at the store getting cold cuts and they had a sample of cheese and he ate it

(while walking around!). But at home he is reluctant.

Thanks for all your help.

Debbie

Charge-Debbie-eating disorders

Hi Debbie,

I feel like I'm working (looking) backwards here. You are in Jersey? New

York/Long Island

within easy reach?

I'll look in your area for a specialty clinic, if you give me the right area

to search. (the closest

metro area.)

Also-I could find one of the places Toomey has spoken at in the past year if

you want,

and you could try calling them. One was an Illinois chapter of Easter

Seals. Perhaps

they could tell you how they reached her. Or-we can just find one

well-recognized in your

area.

Let me know which route to follow.

in Ma.

************************************** See what's free at http://www.aol.

http://www.aol.com.> com.

[Guest guest]

Debbie,

Is sensitive to sounds? It may appear an off the wall question,

but sometimes even swallowing can be so loud that is hurts for some

people, causing anxiety when one eats.

Kim

>

>

>

>

>

>

> - I am in Northern NJ. I have been everywhere and nowhere have I

> found a place who can deal with the emotional and psychological aspects of

> eating. wants to eat but there are underlying experiences etc.

> which are stopping him. He can't be called a behavioral problem because the

> behaviors are definitely stemming from the fact that 10 years have gone by

> and he has developed an anxiety towards eating although he can physically

> do

> it now. I appreciate anything you can dig up. I have been to most of the

> major feeding clinics around me. I am specifically looking for a

> psychologist who deals with feeding problems. Thanks for your help, I'll be

> looking forward to see what you come up with. Also, sure, if you could find

> where Toomey was last that may be helpful.

>

> - I have thought about Kennedy Krieger. We were there a long time ago

> and they couldn't help us because they said 's problems weren't

> behavioral, they were very physical - he couldn't swallow. I know they deal

> with behavioral problems with eating but I am unsure of the sort of

> behavioral problems. I may contact them just to see, but my gut is that it

> still isn't what we need. definitely has underlying trauma in

> regards to feeding and it's related to the home environment. He is

> insecure, doesn't trust me etc., set in his ways about it and I am sure he

> had bad experiences here at home related to illness and eating. We never

> forced him to eat but he has had major illnesses while he was becoming oral

> and then stopped eating and I know it is a connection between home because

> he is eating at school. When we are out to dinner he tries foods. We were

> at the store getting cold cuts and they had a sample of cheese and he ate

> it

> (while walking around!). But at home he is reluctant.

>

> Thanks for all your help.

>

> Debbie

>

> Charge-Debbie-eating disorders

>

> Hi Debbie,

>

> I feel like I'm working (looking) backwards here. You are in Jersey? New

> York/Long Island

> within easy reach?

> I'll look in your area for a specialty clinic, if you give me the right

> area

>

> to search. (the closest

> metro area.)

>

> Also-I could find one of the places Toomey has spoken at in the past year

> if

>

> you want,

> and you could try calling them. One was an Illinois chapter of Easter

> Seals. Perhaps

> they could tell you how they reached her. Or-we can just find one

> well-recognized in your

> area.

> Let me know which route to follow.

> in Ma.

>

> ************************************** See what's free at http://www.aol.

> http://www.aol.com.> com.

>

>

[Guest guest]

Debbie,

Is sensitive to sounds? It may appear an off the wall question,

but sometimes even swallowing can be so loud that is hurts for some

people, causing anxiety when one eats.

Kim

>

>

>

>

>

>

> - I am in Northern NJ. I have been everywhere and nowhere have I

> found a place who can deal with the emotional and psychological aspects of

> eating. wants to eat but there are underlying experiences etc.

> which are stopping him. He can't be called a behavioral problem because the

> behaviors are definitely stemming from the fact that 10 years have gone by

> and he has developed an anxiety towards eating although he can physically

> do

> it now. I appreciate anything you can dig up. I have been to most of the

> major feeding clinics around me. I am specifically looking for a

> psychologist who deals with feeding problems. Thanks for your help, I'll be

> looking forward to see what you come up with. Also, sure, if you could find

> where Toomey was last that may be helpful.

>

> - I have thought about Kennedy Krieger. We were there a long time ago

> and they couldn't help us because they said 's problems weren't

> behavioral, they were very physical - he couldn't swallow. I know they deal

> with behavioral problems with eating but I am unsure of the sort of

> behavioral problems. I may contact them just to see, but my gut is that it

> still isn't what we need. definitely has underlying trauma in

> regards to feeding and it's related to the home environment. He is

> insecure, doesn't trust me etc., set in his ways about it and I am sure he

> had bad experiences here at home related to illness and eating. We never

> forced him to eat but he has had major illnesses while he was becoming oral

> and then stopped eating and I know it is a connection between home because

> he is eating at school. When we are out to dinner he tries foods. We were

> at the store getting cold cuts and they had a sample of cheese and he ate

> it

> (while walking around!). But at home he is reluctant.

>

> Thanks for all your help.

>

> Debbie

>

> Charge-Debbie-eating disorders

>

> Hi Debbie,

>

> I feel like I'm working (looking) backwards here. You are in Jersey? New

> York/Long Island

> within easy reach?

> I'll look in your area for a specialty clinic, if you give me the right

> area

>

> to search. (the closest

> metro area.)

>

> Also-I could find one of the places Toomey has spoken at in the past year

> if

>

> you want,

> and you could try calling them. One was an Illinois chapter of Easter

> Seals. Perhaps

> they could tell you how they reached her. Or-we can just find one

> well-recognized in your

> area.

> Let me know which route to follow.

> in Ma.

>

> ************************************** See what's free at http://www.aol.

> http://www.aol.com.> com.

>

>

[Guest guest]

Kim,

Not sure if you are talking to me, my son is , but I can answer you

about him, YES, he is sensitive to sound. No question is off the wall.

Debbie

Charge-Debbie-eating disorders

>

> Hi Debbie,

>

> I feel like I'm working (looking) backwards here. You are in Jersey? New

> York/Long Island

> within easy reach?

> I'll look in your area for a specialty clinic, if you give me the right

> area

>

> to search. (the closest

> metro area.)

>

> Also-I could find one of the places Toomey has spoken at in the past year

> if

>

> you want,

> and you could try calling them. One was an Illinois chapter of Easter

> Seals. Perhaps

> they could tell you how they reached her. Or-we can just find one

> well-recognized in your

> area.

> Let me know which route to follow.

> in Ma.

>

> ************************************** See what's free at http://www.aol.

> http://www.aol. http://www.aol.com.> com.> com.

>

>

[Guest guest]

Sorry for the wrong name popping out.

When we look at the " autistic like " tendencies there are 2 factors

from a neurodevelopmental perspective that are huge, one is

sensitivities - such that many sensations are often blocked just to

get through the day, and two, an imbalance in the branches of the

autonomic nervous system, such that the sympathetic branch (fight or

flight is triggered more readily). How severe these 2 variables are

play a big part in how big a label one gets, because they cause more

of a difficulty interacting with others.

A possibility of how that could apply to . Sound is a

sensation that is hard to block. One can block the unpleasant feeling

of food on the face to tolerate eating - it is predictable. But the

sounds of eating; chewing and swallowing are more difficult to block,

the pain causes the stimulation of the stress response and you have a

never ending cycle of eating and anxiety. If this is a likely

scenario for talking with him about the sounds that are made

while eating, and acknowledging his feelings may help with some of the

dynamics surrounding eating.

As with all things neurodevelopmental, only one of many possibilities.

>

>

>

>

>

>

> Kim,

>

> Not sure if you are talking to me, my son is , but I can answer you

> about him, YES, he is sensitive to sound. No question is off the wall.

>

> Debbie

>

> Charge-Debbie-eating disorders

> >

> > Hi Debbie,

> >

> > I feel like I'm working (looking) backwards here. You are in Jersey? New

> > York/Long Island

> > within easy reach?

> > I'll look in your area for a specialty clinic, if you give me the right

> > area

> >

> > to search. (the closest

> > metro area.)

> >

> > Also-I could find one of the places Toomey has spoken at in the past year

> > if

> >

> > you want,

> > and you could try calling them. One was an Illinois chapter of Easter

> > Seals. Perhaps

> > they could tell you how they reached her. Or-we can just find one

> > well-recognized in your

> > area.

> > Let me know which route to follow.

> > in Ma.

> >

> > ************************************** See what's free at http://www.aol.

> > http://www.aol. http://www.aol.com.> com.> com.

> >

> >

[Guest guest]

Kim,

This doesn’t sound crazy, it’s something I’ve never thought of.. All the

new chewing etc. and swallowing are sounds he is unfamiliar with. It’s like

when he heard running water for the first time. I am going to bring this up

to his therapist and discuss it with him as well and let you know what I

find.

Debbie

Charge-Debbie-eating disorders

> >

> > Hi Debbie,

> >

> > I feel like I'm working (looking) backwards here. You are in Jersey? New

> > York/Long Island

> > within easy reach?

> > I'll look in your area for a specialty clinic, if you give me the right

> > area

> >

> > to search. (the closest

> > metro area.)

> >

> > Also-I could find one of the places Toomey has spoken at in the past

year

> > if

> >

> > you want,

> > and you could try calling them. One was an Illinois chapter of Easter

> > Seals. Perhaps

> > they could tell you how they reached her. Or-we can just find one

> > well-recognized in your

> > area.

> > Let me know which route to follow.

> > in Ma.

> >

> > ************************************** See what's free at

http://www.aol.

> > http://www.aol. http://www.aol. http://www.aol.com.> com.> com.> com.

> >

> >

[Guest guest]

I will be curious as to what has to say about it.

>

>

>

>

>

>

> Kim,

>

> This doesn't sound crazy, it's something I've never thought of.. All the

> new chewing etc. and swallowing are sounds he is unfamiliar with. It's like

> when he heard running water for the first time. I am going to bring this up

> to his therapist and discuss it with him as well and let you know what I

> find.

>

> Debbie

>

> Charge-Debbie-eating disorders

> > >

> > > Hi Debbie,

> > >

> > > I feel like I'm working (looking) backwards here. You are in Jersey?

> New

> > > York/Long Island

> > > within easy reach?

> > > I'll look in your area for a specialty clinic, if you give me the right

> > > area

> > >

> > > to search. (the closest

> > > metro area.)

> > >

> > > Also-I could find one of the places Toomey has spoken at in the past

> year

> > > if

> > >

> > > you want,

> > > and you could try calling them. One was an Illinois chapter of Easter

> > > Seals. Perhaps

> > > they could tell you how they reached her. Or-we can just find one

> > > well-recognized in your

> > > area.

> > > Let me know which route to follow.

> > > in Ma.

> > >

> > > ************************************** See what's free at

> http://www.aol.

> > > http://www.aol. http://www.aol. http://www.aol.com.> com.> com.>

> com.

> > >

> > >