?'s about my 10 mo. son with PWS

[heyjude]

Hello Everybody....

I'm new here. I have been visiting this birthmark webpage for a while but just realized there was a discussion board devoted to PWS. My son Jude is 10 months old and was born with a PWS on his chin, lower lip, cheek, neck, and upper chest. Jude has already had 2 laser treatments and we are looking forward to many more (jk). I became somewhat obsessed with PWS info when Jude was born and now feel pretty educated. I have visited a lot of websites (including Hank's, Ben's, Geoff's and many others) and feel connected to you already.

Anyway, I noticed that there has been a lot of posts lately on fading and maintenance. This is a question I constantly have in my head. HOW MANY MORE? Jude's PWS is pretty light (he's still a baby though) everywhere but his chin. The doctor said 4-6 treatments everywhere but wouldn't even quote on the chin. I am not living my life by those numbers but hoping.

I guess my question is what life is like as a child and adult. I have read a lot of your stories and experiences and they all differ. I wonder if your parents had a strong influence on how you viewed yourself. I want to do all that I can for my little peanut. With Jude's last treatment he was looking in the mirror at the bright purple marks already with question in his eyes. It broke my heart.

There are a few things I wonder about his PWS and how it will change in time:
-As adults or older children with PWS when did it start to thicken? -Did the thickening happen even though laser treatments were sought?
-Because Jude's PWS is on his chin and a tiny part of his lip should I be concerned dentally?
-Do you see technology progressing in time to better remove PWS's?-If so, any buzz out there?
-How light can PWS's really get?-How long will that last?
-What could your parents have done differently or better to help you with your view of yourself?

Any answers or comments will help a young mother wanting to do what is best for her baby.

Thank You,

Kennan (Jude's Mom)

[heyjude]

http://tkgregory.blogspot.com

[missy]

Oh, I like your blog!! It looks like your summer was eerily similar to mine... weddings, funerals... wow.

Anyway, your questions:
-As adults or older children with PWS when did it start to thicken? -Did the thickening happen even though laser treatments were sought?

Laser technology has changed and is changing, so I suspect that if you ask anyone over 20 this question, they will have a different experience than Jude will. Everyone that I know of that has kept up with their laser treatments has had little to no trouble with thickening and blebs.

-Because Jude's PWS is on his chin and a tiny part of his lip should I be concerned dentally?

YES... keep up your yearly dental appointments when he starts going. If you pull back his bottom lip and look at his gums, are they colored differently? I know of one or two cases (Hank is one) that their PWS is in the gums.

-Do you see technology progressing in time to better remove PWS's?-If so, any buzz out there?

As I said, laser technology is changing all the time. The best way to keep up with this is to familiarize yourself with the manufacturerers and read their updates. Also, you can search through medical journal sites for articles, but be aware that you usually have to pay for them (even to download them to read). You might ask your physician's office for any relevent reading materials too. You know, ask him, "When you find something relelvent to Jude's case, would you let me know."

-How light can PWS's really get?-How long will that last?

It can really get very light. It can really last a good long while. But no one can give you those answers.

-What could your parents have done differently or better to help you with your view of yourself?

Well, that's totally out of my element, here, so I'll let someone else take over.

I will say this, though... he looks a happy, healthy child with a strong support system and extended family. I wouldn't worry. (Well, I would, but, you know....)

You could also ask Dr Nelson these questions:
http://birthmark.org/expert/ask_the_pws.php

We have a conference coming up in October, as well. Though you seem to have a good handle on diagnosis and treatment, it would give you a chance to get some face to face time with some of the country's experts in the field.
http://birthmark.org/register.php

Also, I haven't heard you mention insurance. There's a woman here (jettmom) whose son's laser treatments were denied as cosmetic. Did your insurance cover the treatments?

Write soon! And keep us all updated!

Missy

[hankbartenbach]

Hi Kennan,

First of all welcome to the group.
You know plenty about me I see so I can skip that part.

Missy answered your questions pretty good. So I will just add to what she said.

First of all do not ever let a doctor to tell a set number of laser treatments because it is just a guess. There is no way any doctor can predict correctly on a person's PWS is going to react to laser treatment. It is possible to have PWS completely removed but as of right now it is not permement. If it is complretly removed your son might have to have touch up treatments ever five, ten, fifteen years depending on how fast it comes back.

For the difference of not having treatment and having it. Perfect example is Geoff and I. Geoff never had any laser treatments before his plastic surgeries because no doctor would touch him. His grew coblestones that started out a blebs. I on the other hand had laser treatment since I was five and have never had either. My PWS would be a lot worse if I had not done those treatments. Both of use and several other guys I know started to have thickening issues in the age range of 21 thru 23. Girls are different. The reason for the this is because the thickening is some how related to hormons. There is a lot of research going on to find a way for this to be controled.

For lasers. As you saw on my site I have used four different lasers. Out of all of them the V-Beam PDL is the best. Faster, less painful, more effective, and is safe on infants. I am sure this is the machine your doctor uses but I would double check if you do not know.

Dental is a big issue. If there is PWS on his gums then I would be worried. If you can not tell a dentist should be able to take xrays of the teeth to make sure they will come in correctly. As you know my top teeth came in two places to the left and I had a lot of dental surgery. It might be the case for your son it might not. Better to be safe then sorry. When he starts teething (if he has not already) have it checked out.

For the most part with my parents the treated me like they treated my sister. They taught me to not let the comments bother me and to let them roll off my shoulders or in one ear and out the other. I have turned my condition into a learning tool and bring out awareness.

Something else you might want to check out is the possiblity of the PWS being internal where it is on the exterior of the body. Geoff just found out he has a PWS lump in his throut that he is going to have taken care of. An ENT would be able to assist you with find that out.

If there is anything else that I not answered please let me know. If you have any other questions please ask we are all here for you. I am sure a few moms will chime in as well.

Talk to you soon.

Hank

Kennan,

Please email me at sskidmore@aspenmp.com
I would like to show you before and after pics of my sons facial port wine stains. He is now 2 yrs old. Treatment started at 11 months.

Thanks,
shannon

Hi. Everyone gave great advice, I really have nothing to add on.

My daughter has had very good results but she has also had a good amount of treatments beginning at six weeks old. We go yearly now for maintenance.

I chose to do at least one a year to help keep progression at bay and to keep it as light as I possible can. It has faded but it is as light as it will currently get, with the current laser technology.

Good luck....

Elena

[heyjude]

Thanks for all of your replies. I made an appointment with a Pediadontist today. I agree, better to be safe than sorry.

-kennan