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Re: Frightening encounter at the Dentist

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Thank you for reminding me about this again Shari, I am going to ask my dentist

about it then next time we're in. I'd never leave Kennedy alone for anything

like that anyway, but I'd like to hear what the dentist's take on this HOM thing

is... just for future reference.

Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to Graeme

New Brunswick, Canada

Visit the Weir Homepage: http://www.geocities.com/kawfolks

Re: Frightening encounter at the Dentist

>

>

> on 6/21/01 9:04 AM, JEFFREY FOLEY at 3jefmom@... wrote:

>

> > Jillian went to the dentist yesterday to have her 4 molars sealed. My

> husband,

> > Jeff took her. He came home and said it was AWFUL.. He said she was so

> freaked

> > out that she was dripping sweat from screaming so much and they only got

2

> > molars sealed before he whipped her out of the chair and told them to

stop

> and

> > not touch her again. He said they wanted to put her in astraight jacket

> and

> > he refused. He said they had her head tilted so far back that she was

> choking

> > and gagging and it looked like she could not breath. I asked him if he

> told

> > them about the artery wrapped around her esophagus and he said, " no " ...

I

> > said, " Don't you think it would have been a good idea to tell them?? I

am

> > sure they would not have put her in such a position if they knew her

> esophagus

> > was compromised!! " ... Anyway, he said when he saw her gasping in the

> chair,

> > she looked like before he took his last breaths and that was when

he

> > whipped her out of the chair. He said he would rather have her teeth rot

> out

> > before he put her through that again. I was so upset that I wasn't there

> to be

> > with her!!! He also said they cut her gum open so I am giving her a full

> weeks

> > of antibiotics because of her heart defect!!!.

> >

> > Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and

> Jillian 3

> > cHaRGE

> >

> >

> >

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Oh geez , that sounds awful. Are you going to call the dentist and tell

them all about her esophagus issues, etc? I would tell them the WHOLE deal and

have it put right in her chart there about it. I'm sorry she had to go through

that...I hope she's feeling better today.

Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Frightening encounter at the Dentist

Jillian went to the dentist yesterday to have her 4 molars sealed. My husband,

Jeff took her. He came home and said it was AWFUL.. He said she was so freaked

out that she was dripping sweat from screaming so much and they only got 2

molars sealed before he whipped her out of the chair and told them to stop and

not touch her again. He said they wanted to put her in astraight jacket and he

refused. He said they had her head tilted so far back that she was choking and

gagging and it looked like she could not breath. I asked him if he told them

about the artery wrapped around her esophagus and he said, " no " ... I said, "

Don't you think it would have been a good idea to tell them?? I am sure they

would not have put her in such a position if they knew her esophagus was

compromised!! " ... Anyway, he said when he saw her gasping in the chair, she

looked like before he took his last breaths and that was when he whipped

her out of the chair. He said he would rather have her teeth rot out before he

put her through that again. I was so upset that I wasn't there to be with her!!!

He also said they cut her gum open so I am giving her a full weeks of

antibiotics because of her heart defect!!!.

Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and Jillian 3

cHaRGE

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:

That is an awful feeling when you are trying to help and can't get things to

work out right. If it is that bad, I'd agree with Jeff about letting the

teeth rot!

Have they ever tried to have you hold Jillian in your lap and put her head

on theirs? We did that with until she was about 6 yrs old, and got

too big for me to handle. By then, she wanted to be in the " big kid's "

chair.

I think the lap worked because it was Mom (or Dad) holding her and we could

also sign with her since her head was on the oral hygienist's or dentist's

lap. Rarely did it require us to restrain her while holding her. It got

her used to the people working in her mouth and got her acquainted with the

view from there. We had started this when she was only a year old (or less

actually), and she was still trached and a real mess on the respiratory

stuff. Started with the dentist just pulling her lips back to examine gums

or those first few teeth. Then we progress to the tooth-ette (swabs) to

clean her teeth and apply sealant. Then they moved to a regular toothbrush.

Then the cleaning pick. You get the idea. It was just progression,

progression, progression!

Now she tells me to " go away, I'm in the big girl chair " - " myself, alone " !

We even got her to hold fairly still for a successful panoramic X-ray last

time!

We also made sure we went to a pediatric dentist. He actually is one of the

dentists at Riley Hospital's dental clinic. We didn't see him last time,

but an associate who is training in pediatric dentistry. There is a

difference in dentists. My dentist is married to 's and she says she

can't do kids like her husband does: Takes a special touch and great

patience.

I really feel for those of you having these dentist problems. We'd be there

too if we hadn't started going so early before things were really happening

with her teeth.

That's all the suggestions I have. I hope you can get Jillian back into the

dentist and get some understanding from the staff. Otherwise I'd find

somewhere else to go. With the medical conditions these kids have, the last

thing they need is their teeth causing problems that can endanger not only

their oral health, but their lives. But they also don't need to have their

health compromised by the treatment either!

Good Luck!

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (11) and (8, CHARGE), Wife of Rick

oganm@...

marilyn@...

Frightening encounter at the Dentist

> Jillian went to the dentist yesterday to have her 4 molars sealed. My

husband, Jeff took her. He came home and said it was AWFUL.. He said she was

so freaked out that she was dripping sweat from screaming so much and they

only got 2 molars sealed before he whipped her out of the chair and told

them to stop and not touch her again. He said they wanted to put her in

astraight jacket and he refused. He said they had her head tilted so far

back that she was choking and gagging and it looked like she could not

breath. I asked him if he told them about the artery wrapped around her

esophagus and he said, " no " ... I said, " Don't you think it would have been

a good idea to tell them?? I am sure they would not have put her in such a

position if they knew her esophagus was compromised!! " ... Anyway, he said

when he saw her gasping in the chair, she looked like before he took

his last breaths and that was when he whipped her out of the chair. He said

he would rather have her teeth rot out before he put her through that again.

I was so upset that I wasn't there to be with her!!! He also said they cut

her gum open so I am giving her a full weeks of antibiotics because of her

heart defect!!!.

>

> Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and

Jillian 3 cHaRGE

>

>

>

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Marilyn,

Next time I will take the day off my daycare to take Jillian myself. I

thought Jeff could handle the dentist but he always forgets the important

stuff to tell them. If he thought of the esophagus thing, it's natural for a

mommy to inform. Why the heck he neglected to tell them is beyond me, so I

will just have to handle all the appointments from now on. This is what

makes me want to quit my daycare business because I am too busy with other

people's kids that I can't take care of my own.

Foley

Frightening encounter at the Dentist

>

>

> > Jillian went to the dentist yesterday to have her 4 molars sealed. My

> husband, Jeff took her. He came home and said it was AWFUL.. He said she

was

> so freaked out that she was dripping sweat from screaming so much and they

> only got 2 molars sealed before he whipped her out of the chair and told

> them to stop and not touch her again. He said they wanted to put her in

> astraight jacket and he refused. He said they had her head tilted so far

> back that she was choking and gagging and it looked like she could not

> breath. I asked him if he told them about the artery wrapped around her

> esophagus and he said, " no " ... I said, " Don't you think it would have

been

> a good idea to tell them?? I am sure they would not have put her in such a

> position if they knew her esophagus was compromised!! " ... Anyway, he said

> when he saw her gasping in the chair, she looked like before he took

> his last breaths and that was when he whipped her out of the chair. He

said

> he would rather have her teeth rot out before he put her through that

again.

> I was so upset that I wasn't there to be with her!!! He also said they cut

> her gum open so I am giving her a full weeks of antibiotics because of her

> heart defect!!!.

> >

> > Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and

> Jillian 3 cHaRGE

> >

> >

> >

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,

I'm rude to butt in, but I'm always lurking these days, so much is not

so relevant with our son being a little older, however, I worried

about your message from the first one you wrote concerning this

dental appointment. In a few words, you said so much. Now, the alarm

bells are going off for me because I have done this so many times. I

took the whole world (hospital, education etc.)on my shoulders because

I needed to take charge of everything, couldn't trust anyone even

's father, eventually, he just bowed out and because I took over,

he let me. Now, I find that I do everything to my utter exhaustion,

fitting my work in around being a bossy control freak. Jef will feel

incredibly awful about this whole incident anyway, it may well have

put him off doing anything again and made him feel inadequate. Thank

God she's fine, please don't get on my roller coaster, it's impossible

to get off. Love Lesley F.

> Marilyn,

> Next time I will take the day off my daycare to take Jillian

myself. I

> thought Jeff could handle the dentist but he always forgets the

important

> stuff to tell them. If he thought of the esophagus thing, it's

natural for a

> mommy to inform. Why the heck he neglected to tell them is beyond

me, so I

> will just have to handle all the appointments from now on. This is

what

> makes me want to quit my daycare business because I am too busy with

other

> people's kids that I can't take care of my own.

>

> Foley

> Frightening encounter at the Dentist

> >

> >

> > > Jillian went to the dentist yesterday to have her 4 molars

sealed. My

> > husband, Jeff took her. He came home and said it was AWFUL.. He

said she

> was

> > so freaked out that she was dripping sweat from screaming so much

and they

> > only got 2 molars sealed before he whipped her out of the chair

and told

> > them to stop and not touch her again. He said they wanted to put

her in

> > astraight jacket and he refused. He said they had her head tilted

so far

> > back that she was choking and gagging and it looked like she could

not

> > breath. I asked him if he told them about the artery wrapped

around her

> > esophagus and he said, " no " ... I said, " Don't you think it would

have

> been

> > a good idea to tell them?? I am sure they would not have put her

in such a

> > position if they knew her esophagus was compromised!! " ... Anyway,

he said

> > when he saw her gasping in the chair, she looked like before

he took

> > his last breaths and that was when he whipped her out of the

chair. He

> said

> > he would rather have her teeth rot out before he put her through

that

> again.

> > I was so upset that I wasn't there to be with her!!! He also said

they cut

> > her gum open so I am giving her a full weeks of antibiotics

because of her

> > heart defect!!!.

> > >

> > > Foley, Mom to 5 1/2, ( my CHARGEr in heaven)

and

> > Jillian 3 cHaRGE

> > >

> > >

> > >

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Maybe you're being a bit hard on Jeff. One would have thgouth they would

have a medical history on Jillian - she's been before, right? He probably

thought they knew the medical stuff and knew what they were doing.

You will drive yourself crazy if you try to do it all alone. And you my

deny him the chance for some good one-on-one with her while in the waiting

room!

Just be sure Jeff knows that he needs to be sure the dentist - or anyone -

knows Jillian's medical history and what to do with situations that may crop

up. Half the battle is being aware of what possible problems could result.

Rick has called me a pessimist before - I say I'm pragmatic and realistic.

I think through all the " what might happen if... " scenarios and plan from

there. If I've thought about it, I'm less likely to freak or react, verses

respond appropriately.

There have been instances where I become the professional, and the service

provider becomes the spectator. It just depends on the situation and how

comfortable that particular person is with and her needs.

I had a woman (retired nurse) watch one evening for a " date " with

Rick. I told her that, due to allergy season being upon us, might

get gaggy and just to pound on her chest until the mucous breaks up (which

was no big deal, but I had to show her how hard to thump ).

obliged us with needing a demonstration before Rick and I left the house!

The woman, even though trained in medical procedures, was glad it had

occured before we left. She said she'd have called 911 if that had

happened when we weren't home, because got really red faced and just

coughed, and coughed hard and seemed like she'd never stop - which she

wouldn't if you don't start doing percussions on her chest and back.

Another trick is to have raise her arms over her head as that

expands the chest cavity and expands the diaphram.

I know this is different with Jillian and her situation medically, but the

key is being prepared. Jeff just probably didn't even think about telling

them; and I'm sure it brought back painful memories if she looked like

as he was struggling for breath.

Maybe the next time an appointment comes up you can both go and Jeff can see

how you handle the staff. Rick had no clue until he went with me a couple

times. He thought you walked in, they do their thing, and you're on your

way! What a lot he had to learn! And I had to learn to let him become

competent. I'm not saying it was easy, but I am much more relaxed now about

Rick taking to appointments!

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (11) and (8, CHARGE)

Wife of Rick (Mostly patient with me!)

oganm@...

marilyn@...

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on 6/21/01 9:04 AM, JEFFREY FOLEY at 3jefmom@... wrote:

> Jillian went to the dentist yesterday to have her 4 molars sealed. My husband,

> Jeff took her. He came home and said it was AWFUL.. He said she was so freaked

> out that she was dripping sweat from screaming so much and they only got 2

> molars sealed before he whipped her out of the chair and told them to stop and

> not touch her again. He said they wanted to put her in astraight jacket and

> he refused. He said they had her head tilted so far back that she was choking

> and gagging and it looked like she could not breath. I asked him if he told

> them about the artery wrapped around her esophagus and he said, " no " ... I

> said, " Don't you think it would have been a good idea to tell them?? I am

> sure they would not have put her in such a position if they knew her esophagus

> was compromised!! " ... Anyway, he said when he saw her gasping in the chair,

> she looked like before he took his last breaths and that was when he

> whipped her out of the chair. He said he would rather have her teeth rot out

> before he put her through that again. I was so upset that I wasn't there to be

> with her!!! He also said they cut her gum open so I am giving her a full weeks

> of antibiotics because of her heart defect!!!.

>

> Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and Jillian 3

> cHaRGE

>

>

>

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I am sorry you had to go through that. We have had to watch Brad closely

each time at the dentist but luckily both dentists that we have had have been

highly trained at the U of M with vast experience with special needs

children. After my one dentist as U of M retired, it took me a year to find

a decent one. Even the one at Children's Hospital was not good. They do

place Brad in a papoose board for his protection and he gets mad but

tolerates it now. They stop and give him a breather if I tell them and I am

right there with my nose in the situation letting them know what is going on.

I know it is awful!!! One dr. said to put him under in the OR and do a

cleaning. I said that is ridiculous and I finally found someone who was

trained, willing to work on Brad and works very quickly. I suppose when and

if he has a cavity or further dental work I will need the OR situation.

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wow that is horrible...my foster son also freaks out at the dentist. they

can't do any work on him at all...the denist is going to give general and do

all the work in the hospital. is there no chance they could do that with

jillian??

melissa

Re: Frightening encounter at the Dentist

on 6/21/01 9:04 AM, JEFFREY FOLEY at 3jefmom@... wrote:

> Jillian went to the dentist yesterday to have her 4 molars sealed. My

husband,

> Jeff took her. He came home and said it was AWFUL.. He said she was so

freaked

> out that she was dripping sweat from screaming so much and they only got 2

> molars sealed before he whipped her out of the chair and told them to stop

and

> not touch her again. He said they wanted to put her in astraight jacket

and

> he refused. He said they had her head tilted so far back that she was

choking

> and gagging and it looked like she could not breath. I asked him if he

told

> them about the artery wrapped around her esophagus and he said, " no " ... I

> said, " Don't you think it would have been a good idea to tell them?? I am

> sure they would not have put her in such a position if they knew her

esophagus

> was compromised!! " ... Anyway, he said when he saw her gasping in the

chair,

> she looked like before he took his last breaths and that was when he

> whipped her out of the chair. He said he would rather have her teeth rot

out

> before he put her through that again. I was so upset that I wasn't there

to be

> with her!!! He also said they cut her gum open so I am giving her a full

weeks

> of antibiotics because of her heart defect!!!.

>

> Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and

Jillian 3

> cHaRGE

>

>

>

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I know I wrote about this before, but I am an attorney and I worked on a

case where a little girl with special needs died in the dentist's chair.

Due to positioning and a technique they call " Hand over Mouth " she was

suffocated. DO NOT EVER ALLOW A DENTIST TO EXCLUDE YOU FROM THE ROOM WHEN

THEY ARE WORKING ON YOUR CHILD'S TEETH! This " HOM " technique is taught in

dental schools and is much more common than we would like to think. It is

used on " apprehensive " or " difficult " children. As you might guess, kids

with special needs are usually both!

Shari

Re: Frightening encounter at the Dentist

>

>

> on 6/21/01 9:04 AM, JEFFREY FOLEY at 3jefmom@... wrote:

>

> > Jillian went to the dentist yesterday to have her 4 molars sealed. My

> husband,

> > Jeff took her. He came home and said it was AWFUL.. He said she was so

> freaked

> > out that she was dripping sweat from screaming so much and they only got

2

> > molars sealed before he whipped her out of the chair and told them to

stop

> and

> > not touch her again. He said they wanted to put her in astraight jacket

> and

> > he refused. He said they had her head tilted so far back that she was

> choking

> > and gagging and it looked like she could not breath. I asked him if he

> told

> > them about the artery wrapped around her esophagus and he said, " no " ...

I

> > said, " Don't you think it would have been a good idea to tell them?? I

am

> > sure they would not have put her in such a position if they knew her

> esophagus

> > was compromised!! " ... Anyway, he said when he saw her gasping in the

> chair,

> > she looked like before he took his last breaths and that was when

he

> > whipped her out of the chair. He said he would rather have her teeth rot

> out

> > before he put her through that again. I was so upset that I wasn't there

> to be

> > with her!!! He also said they cut her gum open so I am giving her a full

> weeks

> > of antibiotics because of her heart defect!!!.

> >

> > Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and

> Jillian 3

> > cHaRGE

> >

> >

> >

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Marilyn,

Thanks so much for your advice regarding Jeff. I usually just get mad at him

because if you sat him down and asked him what were Jillian's problems, like

what's her hearing loss, which heart defects does she have?, He has no

clue.I am always the one in control of Jillian and he only does it when I

can't . But I really needed your constructive critisism about how I was

treating Jeff. Thanks!!!

Foley

Re: Frightening encounter at the Dentist

> Maybe you're being a bit hard on Jeff. One would have thgouth they would

> have a medical history on Jillian - she's been before, right? He probably

> thought they knew the medical stuff and knew what they were doing.

> You will drive yourself crazy if you try to do it all alone. And you my

> deny him the chance for some good one-on-one with her while in the waiting

> room!

> Just be sure Jeff knows that he needs to be sure the dentist - or anyone -

> knows Jillian's medical history and what to do with situations that may

crop

> up. Half the battle is being aware of what possible problems could

result.

> Rick has called me a pessimist before - I say I'm pragmatic and realistic.

> I think through all the " what might happen if... " scenarios and plan from

> there. If I've thought about it, I'm less likely to freak or react,

verses

> respond appropriately.

>

> There have been instances where I become the professional, and the service

> provider becomes the spectator. It just depends on the situation and how

> comfortable that particular person is with and her needs.

>

> I had a woman (retired nurse) watch one evening for a " date " with

> Rick. I told her that, due to allergy season being upon us, might

> get gaggy and just to pound on her chest until the mucous breaks up (which

> was no big deal, but I had to show her how hard to thump ).

> obliged us with needing a demonstration before Rick and I left the house!

> The woman, even though trained in medical procedures, was glad it had

> occured before we left. She said she'd have called 911 if that had

> happened when we weren't home, because got really red faced and

just

> coughed, and coughed hard and seemed like she'd never stop - which she

> wouldn't if you don't start doing percussions on her chest and back.

> Another trick is to have raise her arms over her head as that

> expands the chest cavity and expands the diaphram.

>

> I know this is different with Jillian and her situation medically, but the

> key is being prepared. Jeff just probably didn't even think about telling

> them; and I'm sure it brought back painful memories if she looked like

> as he was struggling for breath.

>

> Maybe the next time an appointment comes up you can both go and Jeff can

see

> how you handle the staff. Rick had no clue until he went with me a couple

> times. He thought you walked in, they do their thing, and you're on your

> way! What a lot he had to learn! And I had to learn to let him become

> competent. I'm not saying it was easy, but I am much more relaxed now

about

> Rick taking to appointments!

>

> Friends in CHARGE,

> Marilyn Ogan

> Mom of Ken (11) and (8, CHARGE)

> Wife of Rick (Mostly patient with me!)

> oganm@...

> marilyn@...

>

>

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

> July

> 20-22, 2001. Information is available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

> 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

>

>

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:

Rick is much the same as Jeff - he has no cue whether the retinal coloboma

is the left or right! - but he tries and he won't let anyone do something if

he has a question at all or if is distressed.

If it is a real critical appointment and I can't go, I sometimes send a list

of questions/concerns (the sheets from the Manual are great for that!),

along with a write-up of what has and what the implications are.

I've had a single page write-up of 's CHARGE features since she was

an infant and keep it updated.

An example for us is: The ENT doesn't necessarily need to know about the

g-button, UNLESS he has to papoose her to clean wax plugs from her ears.

Then he needs to know that if the binding hits the button the wrong way,

will go ballistic and nothing will get done. Also needs to know

that she uses ASL, so won't appreciate having her hands restrained very

long. Rick once told a doctor that if he restrained 's hands, he'd

tape the doc's mouth and just see how he likes trying to communicate!

I know that, in other circles with chronic illness in the family, the male

(can't always say " husband/spouse " anymore) is often not comfortable with

the medical details. Shoot, my Father-in-law won't even say he's got

diabetes; it's a " sugar problem " . He feels it indicates a sort of weakness

to have a chronic condition. I think it is a man thing or something like

that. Rick has had to learn about the things needs. He is an

absolute wiz at the insurance, but it has taken him a while to get into the

medical implications mode!

The whole thing is not so very different than the old days when moms all

stayed at home and dealt with the kids, and dads all went to work to earn

the money. Seems like we'll always fall into the gender patterns, no

matter how hard we try!

I hope Jillian isn't too terrified the next time you got to the dentist. I

still think I'd be looking for a different one, too.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (11) and (8, CHARGE), Wife of Rick

oganm@...

marilyn@...

Re: Frightening encounter at the Dentist

> Marilyn,

> Thanks so much for your advice regarding Jeff. I usually just get mad at

him

> because if you sat him down and asked him what were Jillian's problems,

like

> what's her hearing loss, which heart defects does she have?, He has no

> clue.I am always the one in control of Jillian and he only does it when I

> can't . But I really needed your constructive critisism about how I was

> treating Jeff. Thanks!!!

>

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