Issues with gums - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources

Reply
 
Thread Tools Display Modes
  #1  
Old 02-21-2007, 07:04 PM
samanthasmom samanthasmom is offline
Junior Member
 
Join Date: Jan 2007
Posts: 21
Default 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?

Thanks!
Reply With Quote
  #2  
Old 02-22-2007, 05:38 AM
hankbartenbach hankbartenbach is offline
Senior Member
 
Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default

Hello,

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 (hankspws.com) 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.

Hank
Reply With Quote
  #3  
Old 05-14-2007, 05:50 AM
QCharmaine QCharmaine is offline
Junior Member
 
Join Date: May 2007
Posts: 8
Default 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?
Reply With Quote
  #4  
Old 05-14-2007, 01:45 PM
samanthasmom samanthasmom is offline
Junior Member
 
Join Date: Jan 2007
Posts: 21
Default

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.
Reply With Quote
  #5  
Old 05-14-2007, 05:09 PM
zuzuspetals zuzuspetals is offline
Member
 
Join Date: May 2007
Posts: 52
Default

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.
Reply With Quote
  #6  
Old 05-15-2007, 03:26 AM
QCharmaine QCharmaine is offline
Junior Member
 
Join Date: May 2007
Posts: 8
Default 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.
Reply With Quote
  #7  
Old 05-16-2007, 06:48 PM
momofAddie momofAddie is offline
Junior Member
 
Join Date: Apr 2007
Posts: 28
Default 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.

Kim
Reply With Quote
  #8  
Old 05-16-2007, 08:26 PM
zuzuspetals zuzuspetals is offline
Member
 
Join Date: May 2007
Posts: 52
Default

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...
Reply With Quote
  #9  
Old 05-17-2007, 01:13 PM
samanthasmom samanthasmom is offline
Junior Member
 
Join Date: Jan 2007
Posts: 21
Default

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.
Reply With Quote
  #10  
Old 05-18-2007, 07:42 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,723
Default

I just got this:

www.harvardoms.org

They might have some helpful information on this subject!

Missy
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
PWS on the gums? landofdan Port Wine Stain Help and Resources 8 07-30-2008 01:36 AM
Insurace Issues nickbar Help and Resources for Hemangiomas 1 05-29-2008 12:19 AM
Infant with VBM on Head and Nuerological Issues on One Side Vavsie Help and Resources for Hemangiomas 3 04-19-2008 04:11 PM
Social Issues hankbartenbach Youth and Teen Support 9 07-11-2006 08:42 PM
Dr. Waner an insurance issues hankbartenbach Port Wine Stain Help and Resources 0 03-16-2006 06:54 AM