dental concerns

[velma]

I have a three year old with a pws that covers his right eye to his
top lip, extending out to his ear. I have recently noticed that his
teeth seem to slant now from his right side up to his left i.e on his
pws side the teeth are noticeably lower. I suspect this is to do with
the gum on the right side growing more due to the pws. He had a dental
check up the other day and I asked the dentist about it but
unfortunately she had no knowledge or information to offer about the
effects of a pws on the gums/teeth. I have tried searching the web for some more info but can't find much at all.
Does anyone know if there are treatments available for pws on children's gums that could prevent dental problems developing?

[velma]

Update!
Since posting the above I have manged to find more info - on this site!- and have also managed to get a referral to Paediatric Dentistry at our local children's hospital. Any useful advice/info I get there I'll let you know...

[hankbartenbach]

Velma,

Welcome to the group.

My name is Henry I am 26 years old with a facial PWS which goes to my eyes, internally to my right ear, upper gums and pallet.

Growing up with my PWS on my gums was hard. It was easy to bleed if I brushed hard and it always looked swellen.

I have had a dermatologist use a laser on my gums before, but I never could tell any difference. I can not remember what type of laser it was but maybe a CO2 laser. I think it was almost 10 to 15 years ago that they tried it a couple times.

For dental surgery. I had my wisdom teeth removed and shocked the doctors because I did not hardly bleed. I have a deformed right side internal curoted artery that can cause major bleeding.

Then I had braces and then porcelan glass teeth with a bridge to fill gaps.

If you would like to see pictures you can see them on my website www.hankspws.com I have pictures from my youth and then after my dental surgeries.


I do have one question for you. Have you had your son seen by an eye doctor? If not you might want to. Glaucoma can come from PWS near eyes. It is from the high pressure where I have really low pressure and that has caused detached retinas.
Glaucoma is part of a condition called Sturge Weber Syndrome in which I have since I have internal PWS on the brain. But I grew out of the seizures early in life. That is the main condition that most people have with SWS.

I hope this all helps and if you have any questions email me or message back here.

Hank

[velma]

Hello Hank
Thank you for the reply. I've had a look at your site and it is really helpful. Thank you so much for sharing your story.
He was due his first laser treatment the other day but the laser was broken and we just got sent home! While I was there I asked about lasering the gums but they don't do it, probably because it won't make any difference as you found. We'll have to wait for the dentist appointment to see what they can do. He's never had any bleeding thankfully. His pws is on the right side of his lip inside and out and already his lip is lower on that side too. They will laser his lip so that might help.
He had a glaucoma check as a baby and was clear. I'm taking all my kids for a regular eye-check next week and have specifically requested a glaucoma test for him at that appointment.
I'll keep you posted on how he is getting on once we have seen the dentist.
Thanks again!
Velma

[velma]

Hello again!

He's been for one eye check but wouldn't let them near him when it came to the pressure test! He has another check in a few days so hopefully he'll be a bit more compliant then...

He's also had his dental clinic. One side is lower than the other and apparently he has a few permanent teeth missing so we're waiting to see an orthodontist to plan ahead for that. I remember now that when he was cutting his baby teeth the first one to come in was off to the side on the upper jaw on the same side as the pws. (All my other kids have cut the top two middle then the bottom two middle first). I suppose this is part of pws on the gum too.

Are problems with teeth common to pwss or is it something that is specific to SWS as any information I find seems to link oral problems with SWS? Or is that only because a pws is a feature of SWS?? I'm confused! He's never been tested for SWS so it is always at the back of my mind as a possibility. Does anyone know if there is a link of this nature?

Velma

[missy]

Velma,

Visit http://swsommunity.org and get in touch through the contact form there, if you haven't already.

I know several individuals who have dental concerns with pws that are present in the palate or gum, but do not present with sws. Possibly, the only reason you can find info on sws sites is that sws always presents with a facial pws.

Missy

[hankbartenbach]

Hi Velma,

Like Missy said a lot of people that have PWS on the gums have SWS. Mostly because with SWS you tend to have PWS internally. I have PWS on my top gum and is on my pallets. But to be truly diagnose with SWS you would have to get a MRI with and without contrast to see if PWS is internal or on the brain. I have met people that have PWS with no SWS, but it is very rare.

I have talked to some people that have PWS on the gums that do not have SWS. Some might have never been tested though.

Hank

[juliemn]

I share your concerns, and it sounds like our children have similar birthmarks. My son has been seeing the dentist every 6 months since the age of 3. He is now 6. He does have bone overgrowth in the gum/teeth area as well.

Both our local dentist and the dental consult we had at a previous SWS conference implied that we should do a wait and see. Both said that it is imperative to keep up with dental visits and healthy teeth habits, as problems could be exasperated heavily by poor dental habits.

If we can wait to do anything invasive until most or all of his adult teeth are in...all the better.

That is just what's been told to me.

It's so frustrating for us, as his mouth now seems to be so off center. We actually have a dental appointment next week, and are hoping to get some new answers.