Re: behavioral problems with CHARGE

[Guest guest]

Ellie-

I know what you mean about the behavioral aspects of CHARGE. The child I

work with has HUGE behavior issues, including major self abuse. The entire

staff has searched endlessly for something to soothe him, but we have been

unsuccessful to this point. The MD's who see him have recommended nothing

for us to try. He is supposed to see a psych MD soon to see if medication

will help. The insurance company is the stonewall on that one.

The irony is that the team does know one thing that may help--cochlear

implants. However, because of the abuse, he is not a candidate. But if he

could hear, would the abuse decrease? This is our catch-22. Anyone with

suggestions, it would be much appreciated.

Ellie--where in Boston do you live? I went to school there and worked with

some people from Perkins. They were very good (I can't for the life of me

remember their names, though).

Kate (PT to a CHARGEr, Ohio)

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: behavioral problems with CHARGE

>Date: Tue, 13 Feb 2001 09:59:02 -0800 (PST)

>

>Hi all you CHARGE survivors:

>

>My youngest son Nicky is now a troubled 8 yr old who

>was dx with CHARGE at 10 hours old--couldnt get the

>feeding tube thru his nasal passages. My soon-to-be

>ex husband and I got the same ole song and dance about

>how bad Nicky's life would be. What they did not know

>at that point, was the behavioral aspect of CHARGE.

>Even though he is a bright boy, Nicky displays all of

>the behaviors that are listed as part of " autistic

>tendencies " that are now a part of CHARGE. Learning

>is hard for my son. Living with him is worse since he

>tends to be confused now as why mom and dad live apart

>and why mom had to leave. The Boston area has many

>fine research facilities and among them is the Perkins

>School (for the blind). Dr. Berstein is a

>beviorist specializing in kids with CHARGE. The SPED

>DEPT in my town has finally heard my requests for

>Nicky to be evaluated (it only took 3 yrs).

>Right now Dr. Bernstein and I are playing touch-tone

>tag but I am determined to get my son the best of the

>best so that his full potential can be met.

>We all must keep on fighting the " professionals " who

>think MOTHER DOESN'T KNOW BEST! I have been right on

>with Nicky since his birth.

>God Bless

>Ellie Cynamon-n

>

>PS....Yes divorce is a definite sympton of CHARGE as

>well when parents don't practise team parenting. One

>of the symptons doctors don't really know or talk about.

>

>__________________________________________________

>

[Guest guest]

Kate,

My son has been down the self abuse road. He will still do it on

occasion but not as bad as before. He is currently on 2 medications Catapres

and Depakote. These really seemed to help him. In hope he gets some help it

can be so frustrating for all involved.

[Guest guest]

Kate-

I live in a town called Framingham. Nicky has had

behavioral issues since he was a few months old. He

used to hold his breath til he turned blue and passed

out. To say this child has been a challenge is an

understatement. No one really understands unless they

walk in my shoes. The ones I feel worse for are the

kids. My elder child Becca because she has to put up

with this stuff (she adores her brother) or Nicky

because I can't seem to learn enough sign to

communicate with him and even though he has enough

hearing to learn to speak I was talked into sending

him to an ASL school where voices are off.

Sometimes I would love to redo some of my choices but

not the one to get pregnant with my little man. I am

so frustrated I could scream!

Take good care Kate

Ellie

--- Kopach wrote:

> Ellie-

> I know what you mean about the behavioral aspects of

> CHARGE. The child I

> work with has HUGE behavior issues, including major

> self abuse. The entire

> staff has searched endlessly for something to soothe

> him, but we have been

> unsuccessful to this point. The MD's who see him

> have recommended nothing

> for us to try. He is supposed to see a psych MD

> soon to see if medication

> will help. The insurance company is the stonewall

> on that one.

> The irony is that the team does know one thing that

> may help--cochlear

> implants. However, because of the abuse, he is not

> a candidate. But if he

> could hear, would the abuse decrease? This is our

> catch-22. Anyone with

> suggestions, it would be much appreciated.

>

> Ellie--where in Boston do you live? I went to

> school there and worked with

> some people from Perkins. They were very good (I

> can't for the life of me

> remember their names, though).

>

> Kate (PT to a CHARGEr, Ohio)

>

>

> >

> >Reply-To: CHARGE

> >To: CHARGE

> >Subject: behavioral problems with CHARGE

> >Date: Tue, 13 Feb 2001 09:59:02 -0800 (PST)

> >

> >Hi all you CHARGE survivors:

> >

> >My youngest son Nicky is now a troubled 8 yr old

> who

> >was dx with CHARGE at 10 hours old--couldnt get the

> >feeding tube thru his nasal passages. My

> soon-to-be

> >ex husband and I got the same ole song and dance

> about

> >how bad Nicky's life would be. What they did not

> know

> >at that point, was the behavioral aspect of CHARGE.

> >Even though he is a bright boy, Nicky displays all

> of

> >the behaviors that are listed as part of " autistic

> >tendencies " that are now a part of CHARGE.

> Learning

> >is hard for my son. Living with him is worse since

> he

> >tends to be confused now as why mom and dad live

> apart

> >and why mom had to leave. The Boston area has many

> >fine research facilities and among them is the

> Perkins

> >School (for the blind). Dr. Berstein is a

> >beviorist specializing in kids with CHARGE. The

> SPED

> >DEPT in my town has finally heard my requests for

> >Nicky to be evaluated (it only took 3 yrs).

> >Right now Dr. Bernstein and I are playing

> touch-tone

> >tag but I am determined to get my son the best of

> the

> >best so that his full potential can be met.

> >We all must keep on fighting the " professionals "

> who

> >think MOTHER DOESN'T KNOW BEST! I have been right

> on

> >with Nicky since his birth.

> >God Bless

> >Ellie Cynamon-n

> >

> >PS....Yes divorce is a definite sympton of CHARGE

> as

> >well when parents don't practise team parenting.

> One

> >of the symptons doctors don't really know or talk

> about.

> >

> >__________________________________________________

> >

[Guest guest]

Kate-

I live in a town called Framingham. Nicky has had

behavioral issues since he was a few months old. He

used to hold his breath til he turned blue and passed

out. To say this child has been a challenge is an

understatement. No one really understands unless they

walk in my shoes. The ones I feel worse for are the

kids. My elder child Becca because she has to put up

with this stuff (she adores her brother) or Nicky

because I can't seem to learn enough sign to

communicate with him and even though he has enough

hearing to learn to speak I was talked into sending

him to an ASL school where voices are off.

Sometimes I would love to redo some of my choices but

not the one to get pregnant with my little man. I am

so frustrated I could scream!

Take good care Kate

Ellie

--- Kopach wrote:

> Ellie-

> I know what you mean about the behavioral aspects of

> CHARGE. The child I

> work with has HUGE behavior issues, including major

> self abuse. The entire

> staff has searched endlessly for something to soothe

> him, but we have been

> unsuccessful to this point. The MD's who see him

> have recommended nothing

> for us to try. He is supposed to see a psych MD

> soon to see if medication

> will help. The insurance company is the stonewall

> on that one.

> The irony is that the team does know one thing that

> may help--cochlear

> implants. However, because of the abuse, he is not

> a candidate. But if he

> could hear, would the abuse decrease? This is our

> catch-22. Anyone with

> suggestions, it would be much appreciated.

>

> Ellie--where in Boston do you live? I went to

> school there and worked with

> some people from Perkins. They were very good (I

> can't for the life of me

> remember their names, though).

>

> Kate (PT to a CHARGEr, Ohio)

>

>

> >

> >Reply-To: CHARGE

> >To: CHARGE

> >Subject: behavioral problems with CHARGE

> >Date: Tue, 13 Feb 2001 09:59:02 -0800 (PST)

> >

> >Hi all you CHARGE survivors:

> >

> >My youngest son Nicky is now a troubled 8 yr old

> who

> >was dx with CHARGE at 10 hours old--couldnt get the

> >feeding tube thru his nasal passages. My

> soon-to-be

> >ex husband and I got the same ole song and dance

> about

> >how bad Nicky's life would be. What they did not

> know

> >at that point, was the behavioral aspect of CHARGE.

> >Even though he is a bright boy, Nicky displays all

> of

> >the behaviors that are listed as part of " autistic

> >tendencies " that are now a part of CHARGE.

> Learning

> >is hard for my son. Living with him is worse since

> he

> >tends to be confused now as why mom and dad live

> apart

> >and why mom had to leave. The Boston area has many

> >fine research facilities and among them is the

> Perkins

> >School (for the blind). Dr. Berstein is a

> >beviorist specializing in kids with CHARGE. The

> SPED

> >DEPT in my town has finally heard my requests for

> >Nicky to be evaluated (it only took 3 yrs).

> >Right now Dr. Bernstein and I are playing

> touch-tone

> >tag but I am determined to get my son the best of

> the

> >best so that his full potential can be met.

> >We all must keep on fighting the " professionals "

> who

> >think MOTHER DOESN'T KNOW BEST! I have been right

> on

> >with Nicky since his birth.

> >God Bless

> >Ellie Cynamon-n

> >

> >PS....Yes divorce is a definite sympton of CHARGE

> as

> >well when parents don't practise team parenting.

> One

> >of the symptons doctors don't really know or talk

> about.

> >

> >__________________________________________________

> >

[Guest guest]

Ellie,

My son Wyatt used to hold his breath and pass out as

well, beginning at 2 days of age. He did that at

least once/twice a day till he turned 2 1/2. He did

that the other day which was the first time in a

loooooong time.(I hate that). But, I gave credit to

his uncle (on the other side) that had a temper and

did the same hold breath/pass out stunt till he was

13!!!!!! I never thought that it might be a " Charge "

thing. Is it? He basically did it when he was so

tired that nothing made him happy. He will once in

awhile hit himself in the head with his fist, but he

knows that I don't like that, so he does it to spite

me, laughing as he does it. That has almost ceased

since his cochlear implant last December. Only when

he's wound up will he do that. I guess I just passed

it off as him being 2 or 3. Is this the sorts of

things that Nicky does?

--- E J wrote:

> Kate-

>

> I live in a town called Framingham. Nicky has had

> behavioral issues since he was a few months old. He

> used to hold his breath til he turned blue and

> passed

> out. To say this child has been a challenge is an

> understatement. No one really understands unless

> they

> walk in my shoes. The ones I feel worse for are the

> kids. My elder child Becca because she has to put

> up

> with this stuff (she adores her brother) or Nicky

> because I can't seem to learn enough sign to

> communicate with him and even though he has enough

> hearing to learn to speak I was talked into sending

> him to an ASL school where voices are off.

>

> Sometimes I would love to redo some of my choices

> but

> not the one to get pregnant with my little man. I am

> so frustrated I could scream!

> Take good care Kate

> Ellie

> --- Kopach wrote:

> > Ellie-

> > I know what you mean about the behavioral aspects

> of

> > CHARGE. The child I

> > work with has HUGE behavior issues, including

> major

> > self abuse. The entire

> > staff has searched endlessly for something to

> soothe

> > him, but we have been

> > unsuccessful to this point. The MD's who see him

> > have recommended nothing

> > for us to try. He is supposed to see a psych MD

> > soon to see if medication

> > will help. The insurance company is the stonewall

> > on that one.

> > The irony is that the team does know one thing

> that

> > may help--cochlear

> > implants. However, because of the abuse, he is

> not

> > a candidate. But if he

> > could hear, would the abuse decrease? This is our

> > catch-22. Anyone with

> > suggestions, it would be much appreciated.

> >

> > Ellie--where in Boston do you live? I went to

> > school there and worked with

> > some people from Perkins. They were very good (I

> > can't for the life of me

> > remember their names, though).

> >

> > Kate (PT to a CHARGEr, Ohio)

> >

> >

> > >

> > >Reply-To: CHARGE

> > >To: CHARGE

> > >Subject: behavioral problems with CHARGE

> > >Date: Tue, 13 Feb 2001 09:59:02 -0800 (PST)

> > >

> > >Hi all you CHARGE survivors:

> > >

> > >My youngest son Nicky is now a troubled 8 yr old

> > who

> > >was dx with CHARGE at 10 hours old--couldnt get

> the

> > >feeding tube thru his nasal passages. My

> > soon-to-be

> > >ex husband and I got the same ole song and dance

> > about

> > >how bad Nicky's life would be. What they did not

> > know

> > >at that point, was the behavioral aspect of

> CHARGE.

> > >Even though he is a bright boy, Nicky displays

> all

> > of

> > >the behaviors that are listed as part of

> " autistic

> > >tendencies " that are now a part of CHARGE.

> > Learning

> > >is hard for my son. Living with him is worse

> since

> > he

> > >tends to be confused now as why mom and dad live

> > apart

> > >and why mom had to leave. The Boston area has

> many

> > >fine research facilities and among them is the

> > Perkins

> > >School (for the blind). Dr. Berstein is

> a

> > >beviorist specializing in kids with CHARGE. The

> > SPED

> > >DEPT in my town has finally heard my requests for

> > >Nicky to be evaluated (it only took 3 yrs).

> > >Right now Dr. Bernstein and I are playing

> > touch-tone

> > >tag but I am determined to get my son the best of

> > the

> > >best so that his full potential can be met.

> > >We all must keep on fighting the " professionals "

> > who

> > >think MOTHER DOESN'T KNOW BEST! I have been

> right

> > on

> > >with Nicky since his birth.

> > >God Bless

> > >Ellie Cynamon-n

> > >

> > >PS....Yes divorce is a definite sympton of CHARGE

> > as

> > >well when parents don't practise team parenting.

> > One

> > >of the symptons doctors don't really know or talk

> > about.

> > >

> >

> >__________________________________________________

> > >

[Guest guest]

----- Original Message -----

From: " Strom "

> My son Wyatt used to hold his breath and pass out as

> well, beginning at 2 days of age. He did that at

> least once/twice a day till he turned 2 1/2.

I thought you might be interested in this article

http://dailynews.yahoo.com/h/nm/20010209/hl/holding_1.html

Friday February 9 10:31 AM ET

Breath Holding Occurs Automatically in Some Kids

NEW YORK (Reuters Health) - For some children, holding their breath until

they turn blue or pass out is a way to manipulate parents or express their

frustration. But for others it is an automatic reaction that may occur in

babies as young as 6 months, study findings reveal.

Such breath holding spells (BHS) typically begin with crying, followed by

noiseless exhalation of breath, a change in skin color and a loss of

consciousness.

According to a report in the February issue of Pediatrics, BHS occurs in

0.1% to 4.6% of healthy children and many cases of severe breath holding

spells start at age 6 to 12 months, with 12% of cases occurring in younger

children. One baby began to experience BHS within hours after birth.

In this study, 95 children with BHS were followed for up to 9 years. About

one third of the children were found to have a family history of BHS. The

highest number of spells occurred between 13 to 18 months in boys and

between 19 to 24 months in girls.

About 30% of children had breath holding spells at least once a day but the

average number of spells was one a week. Spells stopped between 37 and 42

months of age in most children but lasted as long as 7 years in others, the

report indicates.

According to Dr. Francis J. Di, Jr., of the Connecticut Children's

Medical Center in Hartford, the results can be used to develop treatments

and to help parents deal with episodes.

``An important part of evaluating children with BHS is counseling their

parents,'' Di writes. Knowing what to expect ''can allay some parental

anxiety.''

Indeed, Di published a study last year showing that breath holding can

cause severe stress in mothers. Stress caused mothers to view their child

more negatively than mothers of children without medical conditions, that

study revealed.

``Because the parent-child relationship is under stress, mothers of children

with BHS...are at risk of developing dysfunctional parenting behaviors

and/or their children are at risk of developing behavioral problems,'' the

earlier study reported.

SOURCE: Pediatrics 2001;107:265-269.

[Guest guest]

I was recently given a list of behaviors that some

kids with CHARGE show. I need to get my scanner up

and running and then I'll send it.

--- Strom wrote:

> Ellie,

> My son Wyatt used to hold his breath and pass out

> as

> well, beginning at 2 days of age. He did that at

> least once/twice a day till he turned 2 1/2. He did

> that the other day which was the first time in a

> loooooong time.(I hate that). But, I gave credit to

> his uncle (on the other side) that had a temper and

> did the same hold breath/pass out stunt till he was

> 13!!!!!! I never thought that it might be a

> " Charge "

> thing. Is it? He basically did it when he was so

> tired that nothing made him happy. He will once in

> awhile hit himself in the head with his fist, but he

> knows that I don't like that, so he does it to spite

> me, laughing as he does it. That has almost ceased

> since his cochlear implant last December. Only when

> he's wound up will he do that. I guess I just

> passed

> it off as him being 2 or 3. Is this the sorts of

> things that Nicky does?

>

> --- E J wrote:

> > Kate-

> >

> > I live in a town called Framingham. Nicky has had

> > behavioral issues since he was a few months old.

> He

> > used to hold his breath til he turned blue and

> > passed

> > out. To say this child has been a challenge is an

> > understatement. No one really understands unless

> > they

> > walk in my shoes. The ones I feel worse for are

> the

> > kids. My elder child Becca because she has to put

> > up

> > with this stuff (she adores her brother) or Nicky

> > because I can't seem to learn enough sign to

> > communicate with him and even though he has enough

> > hearing to learn to speak I was talked into

> sending

> > him to an ASL school where voices are off.

> >

> > Sometimes I would love to redo some of my choices

> > but

> > not the one to get pregnant with my little man. I

> am

> > so frustrated I could scream!

> > Take good care Kate

> > Ellie

> > --- Kopach wrote:

> > > Ellie-

> > > I know what you mean about the behavioral

> aspects

> > of

> > > CHARGE. The child I

> > > work with has HUGE behavior issues, including

> > major

> > > self abuse. The entire

> > > staff has searched endlessly for something to

> > soothe

> > > him, but we have been

> > > unsuccessful to this point. The MD's who see

> him

> > > have recommended nothing

> > > for us to try. He is supposed to see a psych

> MD

> > > soon to see if medication

> > > will help. The insurance company is the

> stonewall

> > > on that one.

> > > The irony is that the team does know one thing

> > that

> > > may help--cochlear

> > > implants. However, because of the abuse, he is

> > not

> > > a candidate. But if he

> > > could hear, would the abuse decrease? This is

> our

> > > catch-22. Anyone with

> > > suggestions, it would be much appreciated.

> > >

> > > Ellie--where in Boston do you live? I went to

> > > school there and worked with

> > > some people from Perkins. They were very good

> (I

> > > can't for the life of me

> > > remember their names, though).

> > >

> > > Kate (PT to a CHARGEr, Ohio)

> > >

> > >

> > > >

> > > >Reply-To: CHARGE

> > > >To: CHARGE

> > > >Subject: behavioral problems with

> CHARGE

> > > >Date: Tue, 13 Feb 2001 09:59:02 -0800 (PST)

> > > >

> > > >Hi all you CHARGE survivors:

> > > >

> > > >My youngest son Nicky is now a troubled 8 yr

> old

> > > who

> > > >was dx with CHARGE at 10 hours old--couldnt get

> > the

> > > >feeding tube thru his nasal passages. My

> > > soon-to-be

> > > >ex husband and I got the same ole song and

> dance

> > > about

> > > >how bad Nicky's life would be. What they did

> not

> > > know

> > > >at that point, was the behavioral aspect of

> > CHARGE.

> > > >Even though he is a bright boy, Nicky displays

> > all

> > > of

> > > >the behaviors that are listed as part of

> > " autistic

> > > >tendencies " that are now a part of CHARGE.

> > > Learning

> > > >is hard for my son. Living with him is worse

> > since

> > > he

> > > >tends to be confused now as why mom and dad

> live

> > > apart

> > > >and why mom had to leave. The Boston area has

> > many

> > > >fine research facilities and among them is the

> > > Perkins

> > > >School (for the blind). Dr. Berstein

> is

> > a

> > > >beviorist specializing in kids with CHARGE.

> The

> > > SPED

> > > >DEPT in my town has finally heard my requests

> for

> > > >Nicky to be evaluated (it only took 3 yrs).

> > > >Right now Dr. Bernstein and I are playing

> > > touch-tone

> > > >tag but I am determined to get my son the best

> of

> > > the

> > > >best so that his full potential can be met.

> > > >We all must keep on fighting the

> " professionals "

> > > who

> > > >think MOTHER DOESN'T KNOW BEST! I have been

> > right

> > > on

> > > >with Nicky since his birth.

> > > >God Bless

> > > >Ellie Cynamon-n

> > > >

> > > >PS....Yes divorce is a definite sympton of

> CHARGE

> > > as

> > > >well when parents don't practise team

> parenting.

> > > One

> > > >of the symptons doctors don't really know or

> talk

> > > about.

> > > >

> > >

> >

> >__________________________________________________

> > > >

[Guest guest]

I was recently given a list of behaviors that some

kids with CHARGE show. I need to get my scanner up

and running and then I'll send it.

--- Strom wrote:

> Ellie,

> My son Wyatt used to hold his breath and pass out

> as

> well, beginning at 2 days of age. He did that at

> least once/twice a day till he turned 2 1/2. He did

> that the other day which was the first time in a

> loooooong time.(I hate that). But, I gave credit to

> his uncle (on the other side) that had a temper and

> did the same hold breath/pass out stunt till he was

> 13!!!!!! I never thought that it might be a

> " Charge "

> thing. Is it? He basically did it when he was so

> tired that nothing made him happy. He will once in

> awhile hit himself in the head with his fist, but he

> knows that I don't like that, so he does it to spite

> me, laughing as he does it. That has almost ceased

> since his cochlear implant last December. Only when

> he's wound up will he do that. I guess I just

> passed

> it off as him being 2 or 3. Is this the sorts of

> things that Nicky does?

>

> --- E J wrote:

> > Kate-

> >

> > I live in a town called Framingham. Nicky has had

> > behavioral issues since he was a few months old.

> He

> > used to hold his breath til he turned blue and

> > passed

> > out. To say this child has been a challenge is an

> > understatement. No one really understands unless

> > they

> > walk in my shoes. The ones I feel worse for are

> the

> > kids. My elder child Becca because she has to put

> > up

> > with this stuff (she adores her brother) or Nicky

> > because I can't seem to learn enough sign to

> > communicate with him and even though he has enough

> > hearing to learn to speak I was talked into

> sending

> > him to an ASL school where voices are off.

> >

> > Sometimes I would love to redo some of my choices

> > but

> > not the one to get pregnant with my little man. I

> am

> > so frustrated I could scream!

> > Take good care Kate

> > Ellie

> > --- Kopach wrote:

> > > Ellie-

> > > I know what you mean about the behavioral

> aspects

> > of

> > > CHARGE. The child I

> > > work with has HUGE behavior issues, including

> > major

> > > self abuse. The entire

> > > staff has searched endlessly for something to

> > soothe

> > > him, but we have been

> > > unsuccessful to this point. The MD's who see

> him

> > > have recommended nothing

> > > for us to try. He is supposed to see a psych

> MD

> > > soon to see if medication

> > > will help. The insurance company is the

> stonewall

> > > on that one.

> > > The irony is that the team does know one thing

> > that

> > > may help--cochlear

> > > implants. However, because of the abuse, he is

> > not

> > > a candidate. But if he

> > > could hear, would the abuse decrease? This is

> our

> > > catch-22. Anyone with

> > > suggestions, it would be much appreciated.

> > >

> > > Ellie--where in Boston do you live? I went to

> > > school there and worked with

> > > some people from Perkins. They were very good

> (I

> > > can't for the life of me

> > > remember their names, though).

> > >

> > > Kate (PT to a CHARGEr, Ohio)

> > >

> > >

> > > >

> > > >Reply-To: CHARGE

> > > >To: CHARGE

> > > >Subject: behavioral problems with

> CHARGE

> > > >Date: Tue, 13 Feb 2001 09:59:02 -0800 (PST)

> > > >

> > > >Hi all you CHARGE survivors:

> > > >

> > > >My youngest son Nicky is now a troubled 8 yr

> old

> > > who

> > > >was dx with CHARGE at 10 hours old--couldnt get

> > the

> > > >feeding tube thru his nasal passages. My

> > > soon-to-be

> > > >ex husband and I got the same ole song and

> dance

> > > about

> > > >how bad Nicky's life would be. What they did

> not

> > > know

> > > >at that point, was the behavioral aspect of

> > CHARGE.

> > > >Even though he is a bright boy, Nicky displays

> > all

> > > of

> > > >the behaviors that are listed as part of

> > " autistic

> > > >tendencies " that are now a part of CHARGE.

> > > Learning

> > > >is hard for my son. Living with him is worse

> > since

> > > he

> > > >tends to be confused now as why mom and dad

> live

> > > apart

> > > >and why mom had to leave. The Boston area has

> > many

> > > >fine research facilities and among them is the

> > > Perkins

> > > >School (for the blind). Dr. Berstein

> is

> > a

> > > >beviorist specializing in kids with CHARGE.

> The

> > > SPED

> > > >DEPT in my town has finally heard my requests

> for

> > > >Nicky to be evaluated (it only took 3 yrs).

> > > >Right now Dr. Bernstein and I are playing

> > > touch-tone

> > > >tag but I am determined to get my son the best

> of

> > > the

> > > >best so that his full potential can be met.

> > > >We all must keep on fighting the

> " professionals "

> > > who

> > > >think MOTHER DOESN'T KNOW BEST! I have been

> > right

> > > on

> > > >with Nicky since his birth.

> > > >God Bless

> > > >Ellie Cynamon-n

> > > >

> > > >PS....Yes divorce is a definite sympton of

> CHARGE

> > > as

> > > >well when parents don't practise team

> parenting.

> > > One

> > > >of the symptons doctors don't really know or

> talk

> > > about.

> > > >

> > >

> >

> >__________________________________________________

> > > >

[Guest guest]

Ellie,

I don't know how I missed that you're from the Boston area. We are in Connecticut. I see you spoke of Perkins. You know, they are one of the best at what they do! We too have been able to work with them! They also have a few students with CHARGE on campus so they know it's unique characteristics it involves. I wish you all the best with Nicky.

Bonnie, Mom to Kris still ill with Mono, Patty CHARGE 16, and wife to

[Guest guest]

My general suggestion is to see if you can figure out if there is a pattern to

the self abuse, e.g. time of day, general health, place, etc. I believe that

all behavior has an element of communication in it. What is the child trying

to tell us by the behavior? I am attaching a copy of the outline of my

presentation on behavior problems in children with CHARGE. Hope it gives you

some ideas.

Tim Hartshorne, father of

Kopach wrote:

> Ellie-

> I know what you mean about the behavioral aspects of CHARGE. The child I

> work with has HUGE behavior issues, including major self abuse. The entire

> staff has searched endlessly for something to soothe him, but we have been

> unsuccessful to this point. The MD's who see him have recommended nothing

> for us to try. He is supposed to see a psych MD soon to see if medication

> will help. The insurance company is the stonewall on that one.

> The irony is that the team does know one thing that may help--cochlear

> implants. However, because of the abuse, he is not a candidate. But if he

> could hear, would the abuse decrease? This is our catch-22. Anyone with

> suggestions, it would be much appreciated.

>

> Ellie--where in Boston do you live? I went to school there and worked with

> some people from Perkins. They were very good (I can't for the life of me

> remember their names, though).

>

> Kate (PT to a CHARGEr, Ohio)

>

> >

> >Reply-To: CHARGE

> >To: CHARGE

> >Subject: behavioral problems with CHARGE

> >Date: Tue, 13 Feb 2001 09:59:02 -0800 (PST)

> >

> >Hi all you CHARGE survivors:

> >

> >My youngest son Nicky is now a troubled 8 yr old who

> >was dx with CHARGE at 10 hours old--couldnt get the

> >feeding tube thru his nasal passages. My soon-to-be

> >ex husband and I got the same ole song and dance about

> >how bad Nicky's life would be. What they did not know

> >at that point, was the behavioral aspect of CHARGE.

> >Even though he is a bright boy, Nicky displays all of

> >the behaviors that are listed as part of " autistic

> >tendencies " that are now a part of CHARGE. Learning

> >is hard for my son. Living with him is worse since he

> >tends to be confused now as why mom and dad live apart

> >and why mom had to leave. The Boston area has many

> >fine research facilities and among them is the Perkins

> >School (for the blind). Dr. Berstein is a

> >beviorist specializing in kids with CHARGE. The SPED

> >DEPT in my town has finally heard my requests for

> >Nicky to be evaluated (it only took 3 yrs).

> >Right now Dr. Bernstein and I are playing touch-tone

> >tag but I am determined to get my son the best of the

> >best so that his full potential can be met.

> >We all must keep on fighting the " professionals " who

> >think MOTHER DOESN'T KNOW BEST! I have been right on

> >with Nicky since his birth.

> >God Bless

> >Ellie Cynamon-n

> >

> >PS....Yes divorce is a definite sympton of CHARGE as

> >well when parents don't practise team parenting. One

> >of the symptons doctors don't really know or talk about.

> >

> >__________________________________________________

> >

[Guest guest]

Tim

I was told by Nicky's Birth Defects Doc that its more

organic in nature. There is in some CHARGE patients a

problem within the brain. I'm sure our kids who can't

communicate are extremely frustrated but atleast in

Nicky's case I tend to believe his problems are

organic in nature.

god bless

Ellie mother of Becca 10 and Nicky 8 my special boy

--- Tim Hartshorne wrote:

> My general suggestion is to see if you can figure

> out if there is a pattern to

> the self abuse, e.g. time of day, general health,

> place, etc. I believe that

> all behavior has an element of communication in it.

> What is the child trying

> to tell us by the behavior? I am attaching a copy

> of the outline of my

> presentation on behavior problems in children with

> CHARGE. Hope it gives you

> some ideas.

>

> Tim Hartshorne, father of

>

> Kopach wrote:

>

> > Ellie-

> > I know what you mean about the behavioral aspects

> of CHARGE. The child I

> > work with has HUGE behavior issues, including

> major self abuse. The entire

> > staff has searched endlessly for something to

> soothe him, but we have been

> > unsuccessful to this point. The MD's who see him

> have recommended nothing

> > for us to try. He is supposed to see a psych MD

> soon to see if medication

> > will help. The insurance company is the stonewall

> on that one.

> > The irony is that the team does know one thing

> that may help--cochlear

> > implants. However, because of the abuse, he is

> not a candidate. But if he

> > could hear, would the abuse decrease? This is our

> catch-22. Anyone with

> > suggestions, it would be much appreciated.

> >

> > Ellie--where in Boston do you live? I went to

> school there and worked with

> > some people from Perkins. They were very good (I

> can't for the life of me

> > remember their names, though).

> >

> > Kate (PT to a CHARGEr, Ohio)

> >

> > >

> > >Reply-To: CHARGE

> > >To: CHARGE

> > >Subject: behavioral problems with CHARGE

> > >Date: Tue, 13 Feb 2001 09:59:02 -0800 (PST)

> > >

> > >Hi all you CHARGE survivors:

> > >

> > >My youngest son Nicky is now a troubled 8 yr old

> who

> > >was dx with CHARGE at 10 hours old--couldnt get

> the

> > >feeding tube thru his nasal passages. My

> soon-to-be

> > >ex husband and I got the same ole song and dance

> about

> > >how bad Nicky's life would be. What they did not

> know

> > >at that point, was the behavioral aspect of

> CHARGE.

> > >Even though he is a bright boy, Nicky displays

> all of

> > >the behaviors that are listed as part of

> " autistic

> > >tendencies " that are now a part of CHARGE.

> Learning

> > >is hard for my son. Living with him is worse

> since he

> > >tends to be confused now as why mom and dad live

> apart

> > >and why mom had to leave. The Boston area has

> many

> > >fine research facilities and among them is the

> Perkins

> > >School (for the blind). Dr. Berstein is

> a

> > >beviorist specializing in kids with CHARGE. The

> SPED

> > >DEPT in my town has finally heard my requests for

> > >Nicky to be evaluated (it only took 3 yrs).

> > >Right now Dr. Bernstein and I are playing

> touch-tone

> > >tag but I am determined to get my son the best of

> the

> > >best so that his full potential can be met.

> > >We all must keep on fighting the " professionals "

> who

> > >think MOTHER DOESN'T KNOW BEST! I have been

> right on

> > >with Nicky since his birth.

> > >God Bless

> > >Ellie Cynamon-n

> > >

> > >PS....Yes divorce is a definite sympton of CHARGE

> as

> > >well when parents don't practise team parenting.

> One

> > >of the symptons doctors don't really know or talk

> about.

> > >

> >

> >__________________________________________________

> > >

[Guest guest]

Thank you for your kind words. I wish my ex could

understand that I only want the best for Nicky. I

honestly feel that my son needs more than we can give

him at home. My ex makes me feel like I'm a monster

for wanting to have him placed at Perkins until his

behavior can be more manageable. I am not the monster

the ex thinks I am...honest

--- Turk22082@... wrote:

> Ellie,

>

> I don't know how I missed that you're from the

> Boston area. We are in

> Connecticut. I see you spoke of Perkins. You know,

> they are one of the best

> at what they do! We too have been able to work with

> them! They also have a

> few students with CHARGE on campus so they know it's

> unique characteristics

> it involves. I wish you all the best with Nicky.

>

> Bonnie, Mom to Kris still ill with Mono, Patty

> CHARGE 16, and wife to

>

__________________________________________________

[Guest guest]

Ellie,

No you aren't a monster ... you need help with Nicky and if

Perkins can help all the better for you and Nicky.

Casey, mom to Dawn 22 HH, Ken 11 ADHD, and 9 CHARGE

AIM ZeeCasey, ICQ# 728514

http://www.geocities.com/Heartland/1220

[Guest guest]

Ellie,

I'm sure Nicky's Birth Defects Doc is providing you with the best information

he has, but the problem is we really do not know the source of the behavior

problems. But organic or not, what I outline in my presentation still holds

true. Let me give you an example. Suppose you are depressed. We do know

that some depression has an organic cause. But the strategies for coping with

the depression don't change. You are still encouraged to find pleasurable

activities, to eat well and get enough sleep, to share your feelings with

other people, etc. Let me address self abuse another way. Tearing at one's

face is a behavior. There is no organic defect that is the immediate cause of

tearing at one's face. There may be an organic defect that results in pain or

upset or terror and the child learns to respond to the pain, upset, or terror

(obviously there could be many more) by tearing at the face. Let's say you

have an upset stomach. Many of us respond to the pain of that my putting our

hands on our stomach. In doing that we are communicating a pain in our

stomach. Have you ever had gas pain so bad you wanted to rip into your

abdoman and tear it? We don't do that, because we understand the pain and the

fact that it will go away, and that there are things we can do to reduce it.

If you did not understand those things, you might well self-abuse in

response. If there is something organic that leads to the behavaiors we see

in some children with CHARGE, we do not know what it is or what it is doing to

the child that causes them to choose a self-abusive response. But we can

change the self-abusive response if we try to understand what the child is

communicating by it. It is not easy, but a lot of parents have been

successful.

Tim Hartshorne, father of

E J wrote:

> Tim

>

> I was told by Nicky's Birth Defects Doc that its more

> organic in nature. There is in some CHARGE patients a

> problem within the brain. I'm sure our kids who can't

> communicate are extremely frustrated but atleast in

> Nicky's case I tend to believe his problems are

> organic in nature.

>

> god bless

> Ellie mother of Becca 10 and Nicky 8 my special boy

> --- Tim Hartshorne wrote:

> > My general suggestion is to see if you can figure

> > out if there is a pattern to

> > the self abuse, e.g. time of day, general health,

> > place, etc. I believe that

> > all behavior has an element of communication in it.

> > What is the child trying

> > to tell us by the behavior? I am attaching a copy

> > of the outline of my

> > presentation on behavior problems in children with

> > CHARGE. Hope it gives you

> > some ideas.

> >

> > Tim Hartshorne, father of

> >

> > Kopach wrote:

> >

> > > Ellie-

> > > I know what you mean about the behavioral aspects

> > of CHARGE. The child I

> > > work with has HUGE behavior issues, including

> > major self abuse. The entire

> > > staff has searched endlessly for something to

> > soothe him, but we have been

> > > unsuccessful to this point. The MD's who see him

> > have recommended nothing

> > > for us to try. He is supposed to see a psych MD

> > soon to see if medication

> > > will help. The insurance company is the stonewall

> > on that one.

> > > The irony is that the team does know one thing

> > that may help--cochlear

> > > implants. However, because of the abuse, he is

> > not a candidate. But if he

> > > could hear, would the abuse decrease? This is our

> > catch-22. Anyone with

> > > suggestions, it would be much appreciated.

> > >

> > > Ellie--where in Boston do you live? I went to

> > school there and worked with

> > > some people from Perkins. They were very good (I

> > can't for the life of me

> > > remember their names, though).

> > >

> > > Kate (PT to a CHARGEr, Ohio)

> > >

> > > >

> > > >Reply-To: CHARGE

> > > >To: CHARGE

> > > >Subject: behavioral problems with CHARGE

> > > >Date: Tue, 13 Feb 2001 09:59:02 -0800 (PST)

> > > >

> > > >Hi all you CHARGE survivors:

> > > >

> > > >My youngest son Nicky is now a troubled 8 yr old

> > who

> > > >was dx with CHARGE at 10 hours old--couldnt get

> > the

> > > >feeding tube thru his nasal passages. My

> > soon-to-be

> > > >ex husband and I got the same ole song and dance

> > about

> > > >how bad Nicky's life would be. What they did not

> > know

> > > >at that point, was the behavioral aspect of

> > CHARGE.

> > > >Even though he is a bright boy, Nicky displays

> > all of

> > > >the behaviors that are listed as part of

> > " autistic

> > > >tendencies " that are now a part of CHARGE.

> > Learning

> > > >is hard for my son. Living with him is worse

> > since he

> > > >tends to be confused now as why mom and dad live

> > apart

> > > >and why mom had to leave. The Boston area has

> > many

> > > >fine research facilities and among them is the

> > Perkins

> > > >School (for the blind). Dr. Berstein is

> > a

> > > >beviorist specializing in kids with CHARGE. The

> > SPED

> > > >DEPT in my town has finally heard my requests for

> > > >Nicky to be evaluated (it only took 3 yrs).

> > > >Right now Dr. Bernstein and I are playing

> > touch-tone

> > > >tag but I am determined to get my son the best of

> > the

> > > >best so that his full potential can be met.

> > > >We all must keep on fighting the " professionals "

> > who

> > > >think MOTHER DOESN'T KNOW BEST! I have been

> > right on

> > > >with Nicky since his birth.

> > > >God Bless

> > > >Ellie Cynamon-n

> > > >

> > > >PS....Yes divorce is a definite sympton of CHARGE

> > as

> > > >well when parents don't practise team parenting.

> > One

> > > >of the symptons doctors don't really know or talk

> > about.

> > > >

> > >

> > >__________________________________________________

> > > >

[Guest guest]

Tim-

Thank you for the behavior outline. I will pass it on to the rest of the

team and the child's mother. Hopefully we can figure out what he is trying

to tell us.

Kate

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Dear Ellie,

I am so glad you have gotten in touch with Dr. Bernstein. She has been

extremely helpful..even at a very long distance.

I hope all this will help Nicky and you through this tough time!

Sincerely,

Jackie Kenley in San Francisco

E J wrote:

>

> Hi all you CHARGE survivors:

>

> My youngest son Nicky is now a troubled 8 yr old who

> was dx with CHARGE at 10 hours old--couldnt get the

> feeding tube thru his nasal passages. My soon-to-be

> ex husband and I got the same ole song and dance about

> how bad Nicky's life would be. What they did not know

> at that point, was the behavioral aspect of CHARGE.

> Even though he is a bright boy, Nicky displays all of

> the behaviors that are listed as part of " autistic

> tendencies " that are now a part of CHARGE. Learning

> is hard for my son. Living with him is worse since he

> tends to be confused now as why mom and dad live apart

> and why mom had to leave. The Boston area has many

> fine research facilities and among them is the Perkins

> School (for the blind). Dr. Berstein is a

> beviorist specializing in kids with CHARGE. The SPED

> DEPT in my town has finally heard my requests for

> Nicky to be evaluated (it only took 3 yrs).

> Right now Dr. Bernstein and I are playing touch-tone

> tag but I am determined to get my son the best of the

> best so that his full potential can be met.

> We all must keep on fighting the " professionals " who

> think MOTHER DOESN'T KNOW BEST! I have been right on

> with Nicky since his birth.

> God Bless

> Ellie Cynamon-n

>

> PS....Yes divorce is a definite sympton of CHARGE as

> well when parents don't practise team parenting. One

> of the symptons doctors don't really know or talk about.

>

> __________________________________________________

>

[Guest guest]

Ellie,

When Patty was young she went to a school for the hearing impaired where she learned to talk. Actually she had been going on a bus to school since she was 10 months old. First, to a special ed program then, to this other school. I honestly feel that without them Patty would not be functioning where she is. It tore our hearts up to send her. The bus ride was an hour away. But I felt I could do no less for her.

We had searched and searched to find the right program. I can honestly tell you I believe Perkins is one of the best. I know there must be others out there that are good also but in the short time we worked with these professionals it will last a lifetime on us. I finally found people who had vast knowledge about my daughter and her unique characteristics.

It is a good parent who realizes they can't do it all for their child and then find the people who can help unlike any other. You are blessed having Perkins near you. I wish we had. I know if she had had professionals such as those who understood her syndrome she would be even further than she is, which is outstanding.

Search for what is right.

Bonnie

[Guest guest]

Tim,

Mark used to scratch at his face until it bled. It took us forever to

find out that he had a sinus blockage. I ACTUALLY begged his Ped to do a

sinus x ray on a hunch. The whole episode was very frustrating. I can recall

how desperate I was feeling. I don't think the behaviors are ever really from

ONE thing I think like our children there are multiple causes. Frustration,

lack of communication skills, unknown illness, and possible organic causes.

Definitely a most difficult area of CHARGE for families.

[Guest guest]

In a message dated 2/15/01 12:20:58 PM Eastern Standard Time,

Tim.hartshorne@... writes:

<< But with our kids the differences are

really hard to detect, and in fact often there may not be any differences,

just

different situations. >>

Tim

Oh how true

[Guest guest]

,

You are so correct on that. One of the big issues in the area of functional

assessment, where psychologists try to identify the function or purpose of the

behavior, is the recognition that the same behavior may have different functions

in different situations. It's kind of like babies having slightly different

cries for hunger, needing sleep, needing cuddling, etc. Mothers learn to hear

the differences and respond appropriately. But with our kids the differences

are

really hard to detect, and in fact often there may not be any differences, just

different situations.

Tim

Kav810@... wrote:

> Tim,

> Mark used to scratch at his face until it bled. It took us forever to

> find out that he had a sinus blockage. I ACTUALLY begged his Ped to do a

> sinus x ray on a hunch. The whole episode was very frustrating. I can recall

> how desperate I was feeling. I don't think the behaviors are ever really from

> ONE thing I think like our children there are multiple causes. Frustration,

> lack of communication skills, unknown illness, and possible organic causes.

> Definitely a most difficult area of CHARGE for families.

>

>

>

> " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

[Guest guest]

I am a teacher of a student with CHARGE. I am in a self-contained

room of Deaf/Hard of Hearing pre-K students. I need some advice...I

am having difficulty during feeding times with my student. When she

feels she is done eating, she kicks and hits me. The mother is very

insistent that a meal not be skipped so I can not just stop feeding

her. The student is 5 years old and mother is concerned she would

starve herself if she is not forced to eat. Please advise.

S. Su

[Guest guest]

I think that the child is clearly telling you that she is full, and while

as a parent I want to make sure Susie is getting enough food, I have to

let her tell me when she has had enough, I think the mother should sit

back and look at how much her child is getting and she might find that

her daughter is getting enough. Some children with CHARGE can`t handle

a full meal in their tummy, smaller meals work better somethimes. I went

through this same thing with my daughter. I was told by her doctor that

Susie will eat when hungry and won`t starve herself on purpose, and it

worked, I watched her for signs of being full, and she hasn`t starved,

and she has better feeding patterns than when I tried to force feed her,

that would have led to more problems down the road.

Debbie Cachia, Mom to 3 year old CHARGEr Susie.

sherisign@... wrote:

I am a teacher of a student with CHARGE.

I am in a self-contained

room of Deaf/Hard of Hearing pre-K students. I need some

advice...I

am having difficulty during feeding times with my student.

When she

feels she is done eating, she kicks and hits me. The mother

is very

insistent that a meal not be skipped so I can not just stop feeding

her. The student is 5 years old and mother is concerned she

would

starve herself if she is not forced to eat. Please advise.

S. Su

"5th International CHARGE Syndrome Conference, Indianapolis, Indiana,

July

20-22, 2001. Information will be available first in CHARGE Accounts,

the

CHARGE Syndrome Foundation's newsletter."

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

This is a very challenging behavior. I am a psychologist who also has a child

with CHARGE. I have done considerable presentation on dealing with the

behaviors of children with CHARGE. But having said that, I sometimes feel at

a loss when it comes to coping with these. My son will some times object to

his feedings, and has even pulled his button out in the middle. These are

usually times when he is ill, and is often the first sign to us that he is not

feeling well. I too have worried about his missing a feeding, but on the

other hand, all of us miss a feeding here and there.

It is important to try and understand the purpose of the behavior. One thing

that comes to my mind is a wish to be in control. So many kids with

disabilities experience very few opportunities to make choices, and I know my

son who is deaf-blind does not generally have a clue as to what the choices

are that we have made for him. When he gets in the car, he generally has no

idea where he is going, how long it will take, and for what purpose. So one

thing I would suggest is to look at how much control your student has in

general. Increasing her sense of control in other areas, might reduce her

fights over feedings.

Of course you do want to rule out discomfort. Her method of requesting for

you to stop is a poor one, but it may be a legitimate request. Having said

that, I am concerned that her request is not honored. She may not understand

the importance of the feeding for her over all health. She wants to be done,

and is communicating that, and the response is, from her perspective, " we

don't care what you want " . The frustration over this is possibly what led to

the development of her negative behavior. Usually, when my son indicates that

he objects to a feeding, I go away and approach him again 15 to 30 minutes

later. Probaby in more half of these situations he then cooperates with me.

One method to intervene with this would be when she starts to kick or hit, to

sign to her (or whatever communication system you are using) a question as to

whether she wants you to stop. Then help her make a " stop " sign. Then

immediately comply with her request. This way you improve communication and

decrease negative behavior.

I have to rush off to something right now. If this does not make sense, email

me privately and I'd be happy to consult further on it.

Tim Hartshorne, father of

sherisign@... wrote:

> I am a teacher of a student with CHARGE. I am in a self-contained

> room of Deaf/Hard of Hearing pre-K students. I need some advice...I

> am having difficulty during feeding times with my student. When she

> feels she is done eating, she kicks and hits me. The mother is very

> insistent that a meal not be skipped so I can not just stop feeding

> her. The student is 5 years old and mother is concerned she would

> starve herself if she is not forced to eat. Please advise.

>

> S. Su

>

>

> " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

[Guest guest]

I am looking to find a support group for CHARGE Parents in my area.

I am a counselor working with a family of CHARGE child. I live in

the Tampa/St. Pete area. I would appreciate any leads.