hurting teeth

[jlang]

Anders went to the dentist and his two front teeth and one on the side are being damaged because of him always putting things in his mouth. He is going to have to have them pulled next time due to them being chipped so badly. Thankfully he hasn't lost his baby teeth so the Dr assures us his permanent teeth will come in fine. Once they are in though I don't want them to be damaged from chewing on things. We will probably get them capped though. I have two questions for everyone

1) Anders will put anything and everything in his mouth (present bag, cards, stuffed animals, baby teeth rings, etc) while we try to have certain toys that he only puts in his mouth this doesn't always work because we will walk away to do something and turn around and he has different objects in his mouth. (He knows that he shouldn't because as soon as he sees us he takes it out of his mouth and holds it towards us to hand it to us it is the cutest thing!)Does anyone know of certain toys that he can put in his mouth that won't damage his teeth?

2) The only time that Anders had dental work he had to go under general anesthesia (he was gettting his tonsils out at that time too) and when he was coming out of it his oxygen went very low and he had to be in ICU for a couple of days. Thankfully he has only had to have his teeth checked and cleaned since so we haven't had to worry about him going under though I am sure the time will come that he will need to. My question is has anyone's kid with AS had problems with anesthesia?

Thanks so much
Jessica
Kellen 10
Anders 5 deletion +
Alannah 2 months

[Magster's Mom]

Hi Jessica,

Maggie is six. She often puts things in her mouth but is like Jellen and takes them back out again. For us, we've found that there are certain times Maggie needs or craves this more than others. I thought she had outgrown her need for chewing on things but then she started losing baby teeth and man oh man...Its all back!! Be warned, the need to chew might get worse before it gets better! Maggie is very sensitive to things in her mouth and I think the sensation of teething is unusually intense for her. But some of the things that help her not need to chew so much are deep jaw massage (like for TMJ), pressure throughout her body such as joint compressions, getting perfect seizure control on the ketogenic diet, getting lots of physical activity, etc. Maggie has not done damage to her teeth as a result of her chewing but she has ground her molars completely flat from tooth grinding.

Maggie also had dental work when she had tonsils out, and also had problems with her breathing. In Maggie's case, she ended up on a vent in the ICU for almost 3 weeks. She has had anesthesia for at least a half dozen other surgeries/procedures such as g-tube surgeries, GI biopsies and GI studies, etc, and no problems. She is having a sedated bone density scan and dental work in January. Ever since her respiratory failure, she gets extra precautions before surgeries such as extending the fasting time period. Maggie has very slow stomach motility; her stomach is slow to process food. The usual fast is only about 8-12 hours before anesthesia. In Maggie's case, we admit her the day before and have her fast for nearly 24 hours before she has anesthesia now.

In Maggie's case, her respiratory failure was a condition called ARDS or Acute Respiratory Distress Syndrome. Its a massive shock reaction where the lungs suddenly inflame to the point of organ failure and is very deadly. We have not found other kids with AS who developed ARDS after getting tonsillectomies or anesthesia and believe me, I looked for them! We did talk to a researcher here in Canada who has found a very small number of kids in the general population who have tonsillectomies followed by ARDS and he found it was caused by very rapid metabolization of codeine administered for pain after the surgery. He feels that children should not receive codeine for pain relief after tonsillectomies unless they have had codeine in the past without any problems. We took his advice and have avoided codeine.

We have also found that Maggie tends to have seizures after surgeries and anesthesia. I suspect its the stress of the surgery on her body more than the anesthesia itself. We now automatically treat with an extra IV anti-seizure med after surgeries until we're confident she is in the clear.

There have been two research reports on anesthesia in AS and both were unremarkable and didn't really find anything interesting, but you can tell your anesthesiologist to research AS and anesthesia and he should find two articles. If you e-mail me at sheldon.erin@gmail.com, I can forward you the two articles.

Good luck!! I know that Maggie's first surgery and anesthesia following her tonsillectomy and ARDS was so nerve-wracking but she has not had problems with subsequent surgeries.

Erin
_________________
Erin Sheldon, mom to Maggie, del+, DOB 8/14/03 and Ella DOB 8/19/06. www.sheldonhickey.com

See Maggie star in her movies on YouTube: http://ca.youtube.com/user/magstsersmum

[Mum2Philip]

The first time Philip had anaesthetic was when he was 2.5, for diverging squint, shortly after he was dx for AS. He had a few seizures at the time but then he was much worse, couldnt lift his head like a new born baby. It was his worst time for seizures (this may be pure coincidence that they would have been bad even without the anaesthetic) and no improvement until Rivotril (Clonzapam) was added to the Epilim (Sodium Valproate), dramatic improvement immediately. Then seizure free after age 4

He has had surgery for tonsils when he was 5, broken arm, surgery for heelchords, and other times for just putting on plaster casts to stretch his leg tendons, no problem with anaesthetic, and few times for dental work (impossible to do anything other than examine him while he is awake, major struggle we were always scared his seizures would come back but "touchwood" no problems.

He had wide spaced teeth on lower jaw, though not so much now, but noticing how much his teeth pn top at sides near front, are getting worn down, his lower jaw protrusion is more obvious now that he is older.

We have a wonderful dentist, and when his teeth got broken on the bottom (diagonal breaks), he did a great job on them (when other dentist would say why bother). They did break again, but at least he tried, the gnashing of the teeth doesnt help, and he chews his hands, so now they are giving him the P&Q chews, which looks awful, but less drool and chewy slimy hands.
Rosemary -Philip AS del aged 20

[DoubleTrouble]

Joe has had anaesthetic more times than we care to remember and has never had a problem with it.
Its the only way to do anything in his mouth!
He used to drool a lot until he had a drain put in at the age of 8 and the acid did his teeth no good.
After the drain his mouth was always dry and that causes just as much damage.
We now use artificial saliva which helps.
His front top teeth became very worn through grinding them together and the dentist could not cap them as he said they would be broken back off in no time at all.
When he was 16 the front bottom 4 teeth were taken out(through decay) and so he got his teeth capped then.
He lost a cap this April(I think it was an apple in his lunchbox that did it) and it was replaced in July.
Our dentist told us that they are now starting to use a new sedative on people with special needs that is so effective that they dont need a general anaesthetic and we are going to try it next time Joe needs treatment(cant remember its name though)
James eats sweets whenever he gets the chance but has only ever had one filling so has never needed an anaesthetic.
_________________
Bob,Stepdad of Joe and James(22).Identical twins with an imprinting defect.

Joe(front) and James with mum.