Treatment for 4 m/o Son's Facial PWS- advice needed!

Hello all!

Ever since birth my son has had a mark on his forehead, pretty much at the center, from his hairline to his brows. It's flat and pink-to-red depending on things like his temperment and the temperature. It's not symmetric and, as he's gotten older, it sometimes looks like three different marks (I see more normal skin in the center).

We've had two visits with a specialist in Latham and both times we were told that the doctor was "95% sure" that the mark was not a PWS. He felt it would fade over the next few years and that, in the event that it did not, we could consider treatment options.

Well this past weekend we decided to seek a second opinion. I was hoping to have one more specialist tell me the same thing... mainly so that I could stop my incessant worrying.

Yesterday we met with Dr. Waner in NYC. Within minutes of seeing us he stated that he felt the mark was PWS and we should begin treating it ASAP. He booked us for a slot two weeks from today to get laser treatment.

My head is spinning. I did not expect such a certain and direct diagnosis of PWS. Both doctors seem to be quite reputable, how do you know as a parent which diagnosis to follow?

Everything I've read has indicated PWS is best treated early so waiting seems risky. And I still have to figure out the financial aspects of all of this. I can forsee an insurance headache!!

So I have some questions for parents of PWS infants/toddlers and would LOVE any advice insight.

1) Did your insurance cover the procedure?

2) Is it done in a hospital or an office?

3) Was is the estimated cost per session (if you know)?

4) How cranky is your baby post-procedure?

5) Are you happy with the results?

6) Are there any risks? I don't mean scarring or swelling... but risks to damaging other things... his little brain is under there and I am so laser ignorant.

7) Any other advice you would give a newbie entering this realm of treatment!!

Here is a photo of my little man. I will attach a few more taken the same day to show the variation in darkness.

Just another photo!

You can see the edges in this one!!

[nickbar]

my son has a hemangioma, but was treated with laser. I don't know who the first doctor is you saw, but I do know that you can trust dr. Waner's diagnosis. Even if the lesion turns out not to be a hemangioma, laser could very well help. I've heard from parents (when their child has both angel kisses/stork bite and hemangioma/pws) that have laser on a pws or hemangioma and the doctor does the angel kiss at the same time.
What you have read about treating pws early is a good idea is correct. THis helps keep the pws from darkening and helps with the fading. PWS can be different... different grades...the depth of the pws can have different results from laser and how often the laser will be necessary.

1) Did your insurance cover the procedure? Yes, laser is often covered. It sometimes requires an appeal. THere are great resources on the support group on msn, here and birthmarks.com about fighting insurance appeals. The doctor can also help by providing a letter of medical necessity for your insurance co.

2) Is it done in a hospital or an office? This depends on the doctor, and the need for general anethesia or not. My son had test spots done in the doctors office because he wasn't put under g.a., but then his normal full treatments were done in the hospital because he was put under g.a., The last treatment he had was done by a doctor that has a lab...the anethesialogist came to the lab rather then being in the hospital. His lession is very large and near his eye, so he had to be put under.

3) Was is the estimated cost per session (if you know)? This depends on the doctor, and whether g.a is used or not... the hospital vs. doctor's office and how many pulses the doctor does.

4) How cranky is your baby post-procedure? The hardest part was holding my son down for the test spots. It was similar experience to holding him still for immunizations. He was fine afterwards and showed no signs of pain...that was just test spots (7) total. After tx. with g.a... he was cranky and threw up after two sessions from the anethesia. For the most part he was just sleepy for the rest of the day and by that evening he was normal again. He never complains about pain. We would give him tylenol for the first day or two just in case. Also, his last few sessions were more intense so he had some swelling...the tylenol helped.

5) Are you happy with the results? VERY!!!! Sometimes it requires different lasers to get the best results. His hemangioma is pretty much gone.

6) Are there any risks? I don't mean scarring or swelling... but risks to damaging other things... his little brain is under there and I am so laser ignorant. Dr. Waner and many others use the Candella Pulse Dye Lasers...which have the cooling system...this helps protect the skin. The laser only penitrates about 1mm deep...so the risk to organs, etc. is not present. The eye is often protected with a shield.

7) Any other advice you would give a newbie entering this realm of treatment!! The doctor can explain more in detail about the procedure...and I would encourage you to ask the same questions to them. Especially about whether or not your son should be put under. The ideal in a laser tx. is to see a lot of darkening... it will look like black/purple spots... this is good..though it might not look good. This may last 10 days or less and as the spots fade the clearing of the pws becomes visible. It can take up to 6 weeks to see the max. results.

Well... I hope this helps. Hopefully someone with pws experience specifically will see your post and respond.

[Aprilsmom]

Hello
My daughter is 8 months old and has a PWS on her right temple. She had her first laser tx on May 8. Her 1st pediatrician told me she had a strawberry and it would go away. I did not believe the dr and switched at her 4 month check up. The new ped. told me it was a PWS and I should contact the dermatology dep. at Texas Childrens.(we live near Houston tx) They were great at explaining everything and confirmed that it was a PWS. She told me there was no reason not to treat. I have been obsessed with it since the ped told me. I have read everything I can find on the internet. Hers changes with temperature and temperment. It is also not symmetric.

1) Did your insurance cover the procedure? It was preapproved BUT they haven't actually paid for it. I was sick to my stomache until they approved it. It was approved at 100% but I won't be happy until it has been paid.

2) Is it done in a hospital or an office? Hers was done in the hospital on the day surgery floor.

3) Was is the estimated cost per session (if you know)? Not sure BUT I can tell you what my insurance was billed if you email me at Erikamiles4815@hotmail.com.

4) How cranky is your baby post-procedure? Mine wasn't cranky at all. It was like she went to the hospital and took a nap. She woke up and was her normal self.

5) Are you happy with the results? Yes. I can see some lighter areas and the Dr and Hospital were great. So we will be doing her 2nd tx in July. They told me they were extremely conservative the 1st time and since she did not blister they would adjust the laser.

6) Are there any risks? I don't mean scarring or swelling... but risks to damaging other things... his little brain is under there and I am so laser ignorant. I don't think there are any risk. It is my understanding that the laser targets the vessel.

7) Any other advice you would give a newbie entering this realm of treatment!! Diffently ask questions. Maybe you would feel better if they explained why they think it is or isn't a PWS. My Derm. explained everything so perfect that I had no doubts or questions once I left her office.

Hope I have helped.

Hello,
I am not a parent of a child with a PWS but I do have a PWS on my face. I am currently undergoing laser treatment. The laser feels like a tiny rubberband snap then immediate coolness. I do not receive any anesthesia but I would expect a child definitly would. I was told that I would probaly need around 3- 6 treatments. I began to see a clearness after about 2 weeks. I was told that my insurance would cover treatments 100% but like someone else said I am holding my breath untill its goes through. Its great that you are getting this taken care of now at a young age. I wish my parents had done so for me. My PWS has darkened to a deep purplish color with age. Good Luck!