Newborn w/ PWS in Phoenix

jettmom · #1 08-21-2006, 03:21 AM

Hi! My 2 mo old son was born with extensive PWS on the chest, back, buttock, and both legs. They even extend to the soles of his feet. They were very remarkable at birth and over the last two months they have drastically lightened. His treatments are scheduled in November and due to the improvement I am questioning whether or not I should do them. Does anyone else have experience with improvement of PWS and PLEASE share your opinions on whether or not I should go through with the treatments.

Thank you

missy · #2 08-21-2006, 11:18 AM

Questions: what kind of treatment? If laser, what kind of laser?

My vote would be yes. Early treatment is best, even if the PWS is lightening some.

Missy

hankbartenbach · #3 08-21-2006, 02:58 PM

Hi,

I agree with Missy treatment is recommended at early age of life. If you can not answer Missy question I would find the answer before you even consider seeing that doctor. One of the most common lasers out there is the V-Beam Pulse Dye laser. I have always liked how this laser reacts to my PWS. It is safe on infants, and treatments do not take near as long as they did with perveous machines I have used.

One other thing you might want to do some research on is KT syndrome. KT effects peoples arms and legs that have PWS on them.
Also, I know this might scare you so I am sorry in advanced but there could be possiblity of internal PWS on your son's organs. I am not a doctor this is just my opinion. I would check over these things just to be safe.

If you have questions you can always contact the Ask the Experts on the front of this website. There is a KT, and PWS doctors that can give you their opinions.

As for the laser treatments again I do recommend it sooner the better because the more birthmark you get removed before he starts school when he gets older the less it will effect him personally. I have a facial PWS and I wish no child goes thru what I did growing up. So if you do not like what road this doctor is takeing seek for additional opinions. The more specialized they are the better. There are some really good doctors on the west coast in the CA section under the resource page above.

Hope this helps.

Hank

jettmom · #4 08-21-2006, 05:56 PM

Wow! Thank you for the prompt responses. The treatments are laser, but I am not sure what kind. Luckily, the pediatric dermatologist I am seeing is world reknown and I feel comfortable with his opinion, however, it is still not his child. I have also done some research into KT syndrome. My son does have one limb that is approximately 1 cm longer than the other, but I was told to wait to follow up with an orthopedist. I was also unaware that PWS could be internal. I was under the impression that was mostly with hemangiomas. None of the information you have given me has scared me. It is why I have sought out support, and for that I thank you.

P.S. I am trying to find out what kind of laser. I know it will be done under general anesthesia and can have bruising for about 10 days. I was also told that due to the extensiveness of his PWS, it could take around 24 treatments. Is that a lot more than usual?

jettmom · #5 08-21-2006, 07:06 PM

I called the doctor and the laser is the V-Beam pulse dye laser

missy · #6 08-21-2006, 07:15 PM

As far as I know, they use the V-Beam PDL is the best to use on infants, so my opinion would be to begin now rather than later.

For a PWS that extensive, that doesn't sound like too many treatments.

Let us know your experiences. Also, if you would tell us where you are located and what physician you are seeing, someone else may have experience with that doctor.

Missy

jettmom · #7 08-21-2006, 07:46 PM

Dr. Hansen at Phoenix Children's Hospital

missy · #8 08-21-2006, 09:42 PM

I have never heard of Dr. Hansen and never dealt with Phoenix Children's. However, it sounds like he is proactive, which is wonderful. Please let us know your thoughts on him after you see him!

Missy

nickbar · #9 08-21-2006, 10:14 PM

You can always email Dr. Nelson from ask the expert on this site and get a second opinion/check the information your doctor gives you. You can read more about Dr. Nelson on his profile.

Good luck. And please do let us know if you would recommend Dr. Hansen once you've had experience with him. We can always use more physicians in our list!

hankbartenbach · #10 08-22-2006, 05:05 PM

Hi again,

With as extensive as your sons PWS is depending on how dark it is I have found that doctors can not prodict how many laser treatments it will take. The darker the PWS the harder it will be to get removed. Unless your son's PWS is almost pink I can probably say you will have more then 24 treatments.
If you would like to see before and after pictures of laser treatments of me growing up you can visit my website at hankspws.com But remember even though I have been doing laser treatment for over 18 years the technology is a lot better then when I started when I was five. The V-Beam is still the best out of all the machines I have used. It is more effective and does not hurt near as much.

Hope this helps some more.

Hank