? PWS on 3 month old, please look at pic and let me know what u think

#1 12-15-2005, 01:44 PM

Hi, i am so glad i have found this site.

I am wondering if you can look at my picture of my 3 month old son and tell me if its a PWS.

He has the mark on his face and a slightly raised, dry mark down his right arm.* When he was born he had a mark on his chest too but this is hardly noticeable now, just like a dry patch.

We saw a consultant and she said she thought the mark on his arm was linked to the mark on his face.

I was told when he was born that the mark on his face was a stork bite and would disappear in a few months but they didn't know what the mark on his arms was.* When i saw the consultant she said it was a PWS.* He has a mark on the back of his neck that she said is a stork bite but is the same shape as the one on his face just lighter.

When he was a few days old the mark on his arm went really flaky and dry, does pws do that?

Do you think that they look like PWS?* I have been reading about PWS and i didn't realize there are so many syndromes linked to PWS.* Im now very worried.* Do you think i should get my doctor to get him checked out for the Syndromes?

I know the mark on his face isn't too big but the one on his arm is about 50%.* Could I get laser treatment for him?* When is the best time to do this treatment, is it painful for a baby?

I would be grateful if you could reply

Ive tried to send an email to the experts but keep getting an error.

eprmo · #2 12-15-2005, 03:15 PM

It can't hurt to get an expert's opinion. I'd go for for a consultation..You should have a definitive answer,,so you don't feel so afraid.

Pictures don't always give accurate presentations.

Find a doctor who specializes in "birthmarks"..There is a list on the front page of this web-site..

If you choose to do laser,,..your physician will tell you when the right time is. Babies do fine...

Elissa

hankbartenbach · #3 12-15-2005, 05:06 PM

Hi Jane,

I am 23 with PWS/SWS.

I think you should ask the experts on KT and SWS. The reason the err came up is because it is time sensitive. It get it all the time because it takes me to long to write a post. What I suggest doing is edit copy edit paste your letter to the experts. You can do that with a right hand click of your mouse or go up to your menu under edit. What sometimes works for me is hit the back arrow on your broweser and then go back forward and it works sometimes.

Anyways, from the picture and what you discribed it sounds like he might have KT syndrome. That is PWS that effects the limbs. KT syndrome is linked to SWS (Sturge Weber Syndrome). If his PWS is near either of his eyes I strongly suggest getting his eyes checked for glaucoma by a Opthomologest. To find out if he has SWS he would have to get a MRI with/without contrast. That is the only way to find out as of this day and age technology.

I agree with Elissa, you should find a PWS doctor in your area from the Resource section above, and contact the experts on the front page of this website. Like I said send it to the SWS and KT experts, and if the eye is involved with PWS to the Glaucoma expert.

Yes, it is possable to do laser treatment to an infant. They ussually will put the child under GA for the treatment. Expecually in your sons case with it being on the arm. I have used the V-Beam Pulse Dye Laser. It is one of the best out there right now and safe for infants.

At birth PWS is greatly confused with Stroke bit.

I can not answer the flakness. I am sure others will chime in maybe they will know.

If you have any other questions please ask we are here for you.

Hank

#4 12-17-2005, 03:24 PM

If you live in the UK get in touch with Prof harper at his private practice in London Harley street. He is the best. You can't get people opinion as they are not Doctors. Ask a professional and you will get the right advice.
good luck
Nicole

hankbartenbach · #5 12-17-2005, 05:24 PM

Hi Nicole and Jane,

Do not know if you are aware there is a chapter of VBF in Europe. www.vbfeurope.org I believe. There are other people from the UK and London on that group that I have talked to.

You are correct Nicole on getting profesional opinion, but myself and other adults on the group give more of the "been there done that" opinion. I have come acrossed many doctors in my life that do not even understand my conditions (not just PWS) until I educated them on it.

Hank

hankbartenbach · #6 12-17-2005, 05:27 PM

Hi Nicole and Jane,

Do not know if you are aware there is a chapter of VBF in Europe. www.vbfeurope.org I believe. There are other people from the UK and London on that group that I have talked to.

You are correct Nicole on getting profesional opinion, but myself and other adults on the group give more of the "been there done that" opinion. I have come acrossed many doctors in my life that do not even understand my conditions (not just PWS) until I educated them on it.

Hank