My 4 month old just had first treatment

[robolynn29]

First I want to say thanks to the board. I've been reading since my DD was first diagnosed. We took her to Texas Children's Hospital in Houston today for her first treatment and to be honest I was expecting a purple baby, but she's purple AND spotted. She looks like something out of Star Trek. Anyway, they used a new Vbeam laser on her that has the cooling puff right after the zap to make things less painful.

Right now she's sleeping as she's had some pain meds. Her face, ears, neck, chest, arms and upper back were treated and it took 30 minutes. Her next treatment is in January.

Anyway, I just wanted to report in and again thanks for the info - even if you didn't know I was reading it.

Robin

[missy]

Hi Robin!!

Thanks for the update. Did we forget to mention the spots??

Keep us in the loop and let us know how the healing goes... your experiences might help some OTHER lurker that we don't know is reading. We often get questions about how long it takes to heal and what to expect, especially for children.

I can't believe we forgot about the spots!

Missy

[Aprilsmom]

Robin,
I think we may have spoke Thursday in the elevator. My daughter had the PWS on her temple. If so I am glad to hear she is doing well. My daughter also did well and is playing. Her next treatment is Jan. 4th.
I also started lurking on this site the day I found out. It has been extremely helpful along with Dr. Metry.

Again so glad she is doing well.

Erika

[robolynn29]

Erika!! How funny. We did meet in the elevator and I guess I'll see you on January 4th as well. Montana will be getting more treatment done.

How did your daughter's treatment go? I know you were hoping that might be her last.

Robin

[Aprilsmom]

Robin
Glad to here from you. She did great. From what we see now she will have another treatment. The pruple is gone but it is still a little red. This last treatment really lighten it alot. The new machine made it alot darker purple then the last treatments.
How is Montana? Are all the purple dots gone?

Erika

[robolynn29]

You know she doesn't have purple spots anymore, but white ones instead. It is amazing to see the areas that have already improved with one treatment. Because hers is so extensive, we'll be having numerous treatments, but those little white spots give me alot of hope.

Robin

[sdelight1]

hi

am very interested in your posts. i am from the uk and my 1 year old has just had a laser test patch on a capillary malformation on the midline area of his face.. this has been a long waited for treatment after being told lots of misinformation by various doctors since the day he was born. the gist of most of the information was that since his birthmark was on his nose and forehead (and is not a stork mark) that it would not be responsive to treatment. after a lot of research we took him to a good hospitial and have been seen by some excellent doctors who have tried to reassure me.

anyway the test patch seems to have worked and after four weeks we are seeing some clearance and paler dots where the laser has been. the dots seem to fluctuate like the rest of the birthmark dpending on heat, tiredness etc..

is this the norm i am panicking that the clearer dots will go back to how they were before due to the fact that they seem to fluctuate a lot at the moment.

sorry to be a pain but was feeling positive but then start to worry that some of these doctors were right.

regards sd

Hi iam the mother of a 9 year old boy he has a PWS over his right cheek he has had a 16 coarse of laser treatment we have had our highs and lows although it is not removed it is a lot lighter ,although when he is cold or unwell it is darker.i found the laser treatment a very emotional experince at the moment it has stoped we are waiting till he is 12 so he no longer needs an anisthetic .He is a very happy little boy and is often happy to answer questions .We are from the uk and a small community where he is excepted.Although holidays can be strained by strangers looking at him or their rude comments.

hi- i am the proud mom of a 2 year old little boy with extensive PWS. i have just found out about this board, and have been reading this thread-- it's great to feel like there is now someone that i can chat with about the ups and downs of PWS and laser treatments, because all of these comments are so familiar. mason has had 6 treatments so far, and we fluctuate alot between looking very light, to looking pretty dark... depending on tiredness/wellness/etc... it sometimes gets discouraging, especially since we have to put him through the anesthesia each time. when i feel the best about our decisions is when i look back at baby pics and see the change overall!! anyway, i am very excited to find this board, this is something that i have searched for since mason's birth (we had never even heard of PWS, and were so scared for our little one) and it seemed like answers to questions were so hard to find!

[Aprilsmom]

Hello SD
My daughter is 16 months old and has a PWS on her right temple and corner of eye. For the first 4 months we were given the wrong information about her birthmark but I didn't believe them so I switched to a great peditrician and we were then told to take her to a dermatologist at the childrens hospital. They told us to start laser early so we started when she was 6 months. Yesterday she had her 4th treatment and she has responded well. It was a solid dark redish purple color when she was born. After the 3rd treatment it was VERY light. Most of the time you could hardly see it at all but it does get lighter and darker with temperature, mood etc... And the Dr said that will always be. Yesterday was probably her last treatment. She is fortunate, I have been told most need way more than 4 treatments. I agree with Masons mom about looking back and seeing the overall changes.
It can be frustrating. This board helps. For me it has gotten alot better. At first I didn't do well. It is nice to talk to other people who understand your thoughts and fears.
Erika