Subject: Janice Daley's comment on Braces

Hi Janice and everybody:

No, david never tried to take his braces off and we don't remember about increased drooling. However, since the initial natural response to braces would be to run your tongue over them, there probably was some, at least initially. He never developed any sores in his mouth and we weren't aware of any excessive pain when they were adjusted. We feel David has a very high pain threshhold however. (Is this another characteristic of AS?) Also, his dentist made very minor adjustments each time, in an attempt to decrease the discomfort. It probably meant that he wore the braces longer but so much of life with an angel is a matter of trading one thing for another.

Carolyn, Fred & David (28) Windbeck

P.S. David never had a problem with gagging and vomitting but does cough when eating. We've been told that he has reflux. f,c,&d

Subject: Dental Visits and Braces

Hi everyone:

David was about 6 years old when our family dentist informed us that he was having difficulty cleaning his teeth and suggested that we take him to a local dental clinic. After asking parents of other children who were developmentally disabled, we settled on a private pediatric dentist who had previously worked at that clinic. He was young and David was small so he would swing his long leg over David's chest and arms and we controlled his feet. The Dentist and his assistant cleaned David's teeth. They even successfully filled one or two of David's teeth that way. They treat his teeth with something to retard decay and we limited his intake of sweets. David's natural cleaning process (he refuses to let a tooth brush enter his mouth, despite the efforts of many "knowledgeable people") have kept him cavity free. At the age of 28 he has one spot which the dentist is keeping an eye on.

As David grew bigger and stronger and the dentist grew older and less limber, the restraining process has changed. We have padded restraints (used on him during a hospital visit and can be purchased at a medical supply house.) which accompany David for his six month check-ups. These are tied together under the dentist chair and control his hands and arms, one of us controls his legs and the dentist and two of his assistants control the head, do the cleaning, etc. At a very young age he was strong enough to bend the wedge used to keep his mouth open so the dentist gets David's mouth open and works quickly. Getting his mouth open is done about 6 times each visit and we take other breaks to move him back up into the reclined chair.

Braces were put on David to about 6 teeth to move an extra tooth into a space created when a fall fractured one of his teeth. The dentists wisely chose the same assistant to help him and the monthly visits made David more comfortable and more cooperative. David mouthed everything and ocassionally the end of a wire stuck out which we were able to bend back into place. If not, we made an extra visit.

When David moved into his alternate living home, the agency wanted David to use the dentist their other residents use. This dentist related very well to David but admitted that he didn't think he would ever be able to clean the chewing and inside surfaces of David's teeth, so we have requested that he return to his dentist. One of us must accompany him because the home staff need a doctor's order to apply restraints while we don't need an order. It gives us extra time to be with David and we get first-hand information on his dental health that way.

Carolyn and Fred Windbeck (David 28)

Subject: RE: Dental Visits

Hi, my son is Kolade, age 9 and diagnosed with Angelman's at age 5. Dentist visits are a challenge to say the least. Our dentist has been very patient and regards our visits as his bi-annual workouts! Usually takes 3 of us to hold Kolade down for his checkup and cleaning. We fortunately have not had to do any more serious work yet. Even though Kolade likes his dentist and gives him hugs when its all over, we still have to go through the battle.

When did David go to agroup home? Can you share some of your feelings about that and what prompted that decision? Kolade's neurologist has said I have to deal with making that decision and I've been avoiding it.

I am a single parent, work full time, have been fortunate to make after school daycare arrangements with some very good people who are excellent with my son but everyday is a battle on some level. This is my first time writing and I'm looking forward to learning from other parent's experiences

Regards.

Tammy Scott

Subject: Re: Dental Visits and Braces

Hi Kathy, thank you. We live in Raynham and I certainly know the feeling about not having those "extra hands". We're finding it relatively workable if I stand in front of the dental chair and kind of straddle Kolade's legs, then hold his arms/shoulders back. The hygenist holds the head and tries to keep the block in his mouth and the head still. What kind of blows my mind though is that Kolade will be excited about going to the dentist and anxious to get there and then starts his games as soon as he gets in the chair. I wish he could just "get used to it" so we can do what needs to be done without the wrestling match. Its the same when we go for his quarterly blood levels. He knows exactly where we're going and what to expect but goes nuts as soon as he gets in the chair!

Do you go to the support group meeting? I haven't been able to get there for awhile but perhaps I'll get to meet you soon.

Tammy

Subject: Re: Dentists

I would highly recommend everyone make a big effort to get sealants on to your children's teeth. It is truly effective and cost effective. With fluoride, sealants, daily brushing and managed sugar intake, I think decay problems may never be an issue for you. I would also second the use of a papoose board. I used it for many years to control little ones who needed significant treatment and it was far more conducive to successful outcomes than people holding the kids. For just a prophy that's one thing, but for anything more involved get serious. And don't be afraid of some sedation (like these kids aren't used to that sort of thing). Too much can go wrong if there isn't good control.

Capt. Mark F. Delaney, DMD

Subject: Re: Dentists

Mark, For regular checkups, just the papoose is used for Jennie. But when a sealant or surface cavity is done, Jennie is given Valium. It really only calms and relaxes her a bit, but helps significantly. I think it makes the experience much easier for the Jennie, myself and her dentist. Yes, the sealants and flouride treatments help tremendously!

Janice (Jennie 15, +)

Subject: Re: Dentists

Mark,

For regular checkups, just the papoose is used for Jennie. But when a sealant or surface cavity is done, Jennie is given Valium. It really only calms and relaxes her a bit, but helps significantly. I think it makes the experience much easier for the Jennie, myself and her dentist. Yes, the sealants and flouride treatments help tremendously!

Janice (Jennie 15, +)