Re: Aggravation and answered prayer?

[Guest guest]

Kim - At what age was Dylan able to understand the dentist and cooperate? Our

ped wanted Ethan's teeth checked out because he had a lot of yellow spots on

them. We went to see my older son's pediatric dentist (who I really like) and

the experience was horrible. Ethan does not like anything in his mouth and he

was miserable. The good news was that it was only calcium buildup and not

decay. I was thinking going forward if he cannot tolerate the dentist we may

have to combine the cleanings with his bronchs when he is already sedated.

Jody - mom to Ethan (2 years - ChARGE) and (almost 5)

Kim Lauger wrote:

Michele,

We see a dentist that specializes in kids with special needs and he is

AWESOME. I am always amazed at how Dylan just goes in climbs in the chair,

holds his mouth open and lets him do the exam, cleaning and polishing. All

in about 5 minutes and we are out of there.

Trying to look at his tonsils in a doctor's office is another story. I

guess they need a chair that goes back and a bright light to look at to

distract him. Really it is more than that though, it is just the calm

attitude of the dentist, where he expects the kids to be able to participate

and they do.

On the other issue, you are right, frustrating does not even begin to

describe it.

Kim

> Kim-

> This is how I'm feeling about the delays in Aubrie's surgery date --

> aggravation and answered prayers. Now her dental cleaning at Children's

> had to be canceled so I think I'll go ahead and set her up at our local

> dentist. How hard can it be to clean a kid's teeth in a body cast? I

> can hold her head and arms. So maybe this was the push we needed to get

> going to the regular dentist for cleanings.

>

> Anyway- it is weird how things happen and fall into place -- good and

> bad. It's exciting that you'll be seeing Judith and I really look

> forward to hearing what you learn and how, and if, it helps Dylan.

> Until then, good luck waiting the next month as his " behaviors " continue

> with no help from the drs. Frustrating does even come close to the

> right word, does it?

>

> Michele W

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> 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

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

I always thought Dylan would need his cleanings done in combination with

other surgeries requiring general anesthesia, because we have such a hard

time checking Dylan's throat in a routine exam. He does everything else

great, but hates to open his mouth for the doc to look.

We first went to this dentist when Dylan was 6 and I was pleasantly

surprised at how smoothly it went.

There was a session by a dentist at one of the conferences, I believe

Indianapolis. If I recall right, she mentioned calcium build up being

common in people who are tube fed.

Maybe Ethan will do better when he is older or maybe another dentist would

have a different approach. Dylan has no formal language, so I cannot

attribute his doing well to us telling him about what to expect and him

understanding. It's more the non-verbal communication of the dentist that

it is going to be okay.

Kim L

> Kim - At what age was Dylan able to understand the dentist and cooperate? Our

> ped wanted Ethan's teeth checked out because he had a lot of yellow spots on

> them. We went to see my older son's pediatric dentist (who I really like) and

> the experience was horrible. Ethan does not like anything in his mouth and he

> was miserable. The good news was that it was only calcium buildup and not

> decay. I was thinking going forward if he cannot tolerate the dentist we may

> have to combine the cleanings with his bronchs when he is already sedated.

>

> Jody - mom to Ethan (2 years - ChARGE) and (almost 5)

>

> Kim Lauger wrote:

> Michele,

>

> We see a dentist that specializes in kids with special needs and he is

> AWESOME. I am always amazed at how Dylan just goes in climbs in the chair,

> holds his mouth open and lets him do the exam, cleaning and polishing. All

> in about 5 minutes and we are out of there.

>

> Trying to look at his tonsils in a doctor's office is another story. I

> guess they need a chair that goes back and a bright light to look at to

> distract him. Really it is more than that though, it is just the calm

> attitude of the dentist, where he expects the kids to be able to participate

> and they do.

>

> On the other issue, you are right, frustrating does not even begin to

> describe it.

>

> Kim

>

>

>

>

>

>> Kim-

>> This is how I'm feeling about the delays in Aubrie's surgery date --

>> aggravation and answered prayers. Now her dental cleaning at Children's

>> had to be canceled so I think I'll go ahead and set her up at our local

>> dentist. How hard can it be to clean a kid's teeth in a body cast? I

>> can hold her head and arms. So maybe this was the push we needed to get

>> going to the regular dentist for cleanings.

>>

>> Anyway- it is weird how things happen and fall into place -- good and

>> bad. It's exciting that you'll be seeing Judith and I really look

>> forward to hearing what you learn and how, and if, it helps Dylan.

>> Until then, good luck waiting the next month as his " behaviors " continue

>> with no help from the drs. Frustrating does even come close to the

>> right word, does it?

>>

>> Michele W

>>

>>

>>

>>

>> Membership of this email support groups does not constitute membership in the

>> CHARGE Syndrome Foundation.

>> 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

>> 7th International

>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

>> Information will be available at our website

>> www.chargesyndrome.org or by calling 1-. In Canada, you may

>> contact CHARGE Syndrome Canada at 1- (families), visit

>> www.chargesyndrome.ca, or email info@.... Thank you!

>>

>>

[Guest guest]

Kim,

It sounds like you are going through tons. Sorry to hear of your

frustrations. With Patty's onset of tics it was difficult for us to watch her

be so

frustrated. Yet it was a child psych who finally diagnosed her with tourettes.

This isn't a " behavior " but it is usually a psych who diagosises the child.

We had even taken Patty to as neurologist who perfomed multiple tests,

EEG's, blood tests, etc and then sent us to the psychologist. Patty's psych

is wonderful and works with the hospital in making sure her meds don't

interfeer with her health. You do need one who is familiar with children who

have

dual sensory and/or multiple medical needs especially if they are going to

prescribe meds.

Good luck iwht the Handle Institute. I don't know much about it but It

sounds like you are destined to bring Dylan there. I wish you all the best.

Bonnie.

[Guest guest]

I am always struck by how much our CHARGE child's lives are influenced by

the medical and educational people who happen to live in the area. We have

been very fortunate in the people who have worked with Dylan so far. I work

in the psych filed and so far I have not come across any who understand the

sensory impairments, which is what makes me hold back. We do have a new

doctor at the U of A, she has been here about a year, who does a lot with

developmental delays, autism etc. (1 doctor in Tucson, the 30th largest city

in the US, who deals with autism and we have no developmental pediatricians)

Her clinic is for kids up to age 6, but maybe she would see Dylan anyhow.

Of course I'd have to fight the insurance company to make it happen, but

when has a little fight stopped any of us?

Kim L

> Kim,

>

> It sounds like you are going through tons. Sorry to hear of your

> frustrations. With Patty's onset of tics it was difficult for us to watch her

> be so

> frustrated. Yet it was a child psych who finally diagnosed her with

> tourettes.

> This isn't a " behavior " but it is usually a psych who diagosises the child.

> We had even taken Patty to as neurologist who perfomed multiple tests,

> EEG's, blood tests, etc and then sent us to the psychologist. Patty's psych

> is wonderful and works with the hospital in making sure her meds don't

> interfeer with her health. You do need one who is familiar with children who

> have

> dual sensory and/or multiple medical needs especially if they are going to

> prescribe meds.

>

> Good luck iwht the Handle Institute. I don't know much about it but It

> sounds like you are destined to bring Dylan there. I wish you all the best.

>

> Bonnie.

>

>

>