Lip Growth

#1 01-18-2005, 01:05 AM

Timothy is 7 and having some major growth this past year on the port wine stain side of his bottom lip.
He has decided to NOT have any more laser surgery right now on his pws, but I don't think we are going to be able to sit on this one.

Does anyone have any advise/resources on plastic surgery & lip reconstruction? This is new territory for us and I am feeling clueless once again.

Plus, how do you deal with a young guy and this kind of surgery. He is so doctor phobic these days it is scary.

H E L P.
Rejena Mom of Timothy and Sydnee (birthmark kiddos)

hankbartenbach · #2 01-18-2005, 02:10 AM

Hi Rejena,

I have been in your sons shoes, I know what he is going thru. I started laser treatment on my PWS when I was 5 years old, now 22 I have done treatment for 14 years off and on.

First question, how often are you getting laser treatment?
When I was his age I was going every other month,

Second question, does your son have a favorite song he could listen to during the treatment to get his mind off the zaps, or does he have something that he loves to do for fun that he could take in to the doctors office?

If that does not work you could play a game with him, my grandmother did this all the time even if she was not at the appointment. What she did was guess and number and write it down on a piece of paper and put it into her pocket, if I got the exact number or over I got to do something I liked to do like Chucky Cheeses or something.
Of course I do not know the area of your sons PWS but mine was large and with the old laser, and I was getting over a hundred zaps a trip. The new Pulse Dye Lasers cover more area in less time. I was and still am a hospital phobic, I hate needles, and the smell of hospitals. You have to get his mind off the treatments anyway you can because the phobic is only going to get worse the way the treatments are being approached.

Anyways, the growth is probably from hormons, it will stop and start growing at different times of his age. I am actually getting reconstructive surgery in a month from today with Dr. Waner in NY. I do not know exactly what kind of surgery would be good for your son, because of his age. I would find a plastic surgeion in your area, more opinions the better in this case. Also, you might want to look on the front page of this site under resources, click on find a physican, and then to your state or one close to you.

I hope this helps and if you have any more questions please ask we are here for you.

Hank

swsc · #3 01-19-2005, 08:48 PM

Hi Rejena! Nice to see you here! My 10 year-old grandson has an appointment next month about his lip. It has really grown, and he is having trouble closing his mouth and drooling is becoming a problem. So it looks like debulking can't be avoided any longer. He also has growth problems with his gums.

I think his appointment is around Feb. 8 (I'll check with my daughter) and we'll let you know what they say about it.

Glenda

#4 05-18-2005, 04:51 PM

Hi,
This is a serious problem with bithmark on lip. my daughter is too.
Could you find any information to treat this kind problem?
If you find any, could send to me?
Thank you.
My e-mail address is: qin_yao@yahoo.com

hankbartenbach · #5 05-19-2005, 04:33 AM

Hi qinyao,

The only surgery option I have found to treat my growth on my lip is Plastic Surgery.

Hank

#6 05-20-2005, 07:48 AM

Hi,hankbartenbach:
Thank you very much for your kindest reply.
Could you give me further information about plastic surgeon's contact information?
Qin Yao

#7 04-10-2006, 11:25 AM

hi there,
i have a boy aged 12. he has a pws on the right side of his face and lower lip. it has been growing for the last 5 year and started to cause problems same as yours. we asked at great ormond street hospital in London where he has his laser treatment about it and they referred him to the plastic surgery department. he had his lower lip debulked on march 3rd and his lip id normal now and they even managed to remove some of the birthmark from his lip as they had to take away some of the skin. looks great they said he might have to have another one if it starts to grow again but if he does he should wait until aged 18 so that he has finished growing. they are not sure what causes this some peoples grow and some dont. well worth doing hes very happy with the results but is finding it difficult to get used to a smalled lip as the other one felt normal to him.

petrina