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samanthasmom 02-21-2007 07:04 PM

Issues with gums
My 4 month old, Samantha, has extensive port wine stains on the right side of her face, her neck, chest, arms and legs. They are very light and lacey looking. We went through all sorts of testing since she was 9 days old to r/o Sturge Weber Syndrome and everything has come back normal. We will still see the specialists to follow her every few months, especially the opthamologist since she has it around her right eye.

We noticed a month ago that Samantha's top gum line looks crooked. It looks a little bit swollen and is lighter than the rest of the gumline. Our pediatrician suggested following it for the next month or so and if it gets worse to see a specialist. After looking at some of the posts here I feel like we should take matters into our own hands now and have her gums looked at and x-rays done by a periodontist. She started teething two weeks ago and her bottom two teeth have just come through. I want to make sure that the rest of her teeth should come in OK and if not what we can do for her.

I guess I would like to know if anyone here has had the same sort of experience with the gums and PWS and what can or should be done to correct it?


hankbartenbach 02-22-2007 05:38 AM


First of all welcome to the group.

I am a 24 year old with facial PWS/SWS.

You are doing the right thing keeping up on all those doctors. You have to be the aggresser for your child. Because your daughter has PWS around her eye she will always have a risk of forming Glaucoma. I have SWS but do not have glaucoma, but I have been at a high risk my whole life.

For PWS on the gums. I have PWS on my top gum and on the pallets of my mouth. When my teeth came in my gums bled quite a bit. They also all came in two places to the left. Back when I was a child there was nothing that could be done until I had my permenent teeth. As far as I know that is still true. I would definetly get some x-rays to find out what you are going to have to deal with down the road.

I do have pictures on my website ( of when I was a child. You can go see how my teeth grow into having buck teeth until had braces then dental surgery and had porcelen teeth caped on and had a bridge put in to straighten my teeth.

If you have any other question just ask you can either post it here or email me directly.


QCharmaine 05-14-2007 05:50 AM

My sons gums look irregular too?
This is the whole reason I started doing more research tonight, I noticed today that my sons top gumline looks odd. The right side is slightly enlarged. I am really worried about this. I can't seem to find much information on it, we are not due for his next laser treatment until June, so I'm thinking I should bring him in to have it looked at?

samanthasmom 05-14-2007 01:45 PM

Has your son started teething yet? Samantha is now seven months old and has her bottom two and one top tooth. The other top one is starting to make it's way down. Now that her teeth have started coming through we don't notice the iregularity in her gums as much. I think if anything the teeth on the swollen side may come through first.

We actually took her to a vascular anomalies clinic that her dermatologist referred her to (Penn State Hershey Medical Center, PA). One of the doctors observing her was a plastic surgeon who specializes in cleft palate so he is very familiar with the structure of the gum and palate. He said that it did not seem very pronounced and felt it was really a wait and see thing while her teeth are coming in. He felt the extra blood supply is causing the overgrowth in her gums. The term they used for this is gingival hypertrophy. She does not have PWS on her gums so she hasn't experienced any bleeding or any discomfort any more than the usual teething pains as far as we can tell. I am still keeping the option open to consult with a pediatric dentist in case there is a problem with her teeth coming in but so far everything seems fine.

zuzuspetals 05-14-2007 05:09 PM

My understanding is that if the port wine stain is on the gums, you may see some abnormal eruption of teeth. This could mean teething early, teething late, ann abnormal placement of teeth. That's what my daughter's dermatologist told me. There is no PWS on her gums, but I still worry about it. I wish there were less things to worry about. I feel like I'm constantly worrying about one thing or another related to the PWS.

QCharmaine 05-15-2007 03:26 AM

Yes, he is teething
Carson HAS started teething, he has one tooth on the bottom. I am mainly worried because I don't recall this happenening to either of my first two children, and it's right under where his PWS is...I will most definitely have the Dr. look at it when we go in next month for his laser, and in the mean time I'm just keeping an eye on it and praying it is swollen from teething or something. He is also a thumb sucker, my first one, so I don't know if that could be causing it. That whole side of his mouth on the top looks kind of swollen.

momofAddie 05-16-2007 06:48 PM

PWS and gums
I took my daughter to get checked out by the pediatric dentist. He stated there was no PWS on the gum area, but we would just watch and wait. I hate all of this watch and wait stuff.... I wish sometimes someone could give a definite answer on something. PWS is so unpredictable it seems. Sorry to vent, I'm having a bad day.


zuzuspetals 05-16-2007 08:26 PM

Kim, I feel the same way you do sometimes. All this waiting and seeing just kills me. I am the type who wants to get things done NOW. There are days I drive myself crazy looking up every little detail I can about PWS so that I can have some sort of clue as to what the future holds for my daughter. And most of the time, I come out more worried than relieved. I'm afraid, and I hate it. And I worry that somehow I did something to make this happen to her, and then I feel overwhelming guilt and I don't even know why.
Just wanted you to know that you're not alone on your bad days...

samanthasmom 05-17-2007 01:13 PM

I'm with you both... I have struggled with the fact that most of the syndromes associated with PWS can present up to a few years of age. You can be so happy and carefree one day and then the fear can come on like a wave and you worry constantly of what might happen in the future.

I try not to let the "what if's" get in the way of enjoying being a mother to my sweet little girl, but on my bad days it's pretty hard not to think about it. Hang in there.

missy 05-18-2007 07:42 PM

I just got this:

They might have some helpful information on this subject!


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