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  #1  
Old 02-22-2007, 09:03 PM
kck kck is offline
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Default 2 weeks old...

well.... I'm trying not to look at all the bad stuff and no one (medically) has told us our little baby girl has PWS.... but the pictures are way to close.

the descriptions are too telling.
I can only believe our baby girl has it.

Its a big spot on right forehead to on the eye lid and back to ear.
a little bit on left cheek (not much) and on back of neck some.

My first concern was the bad things that can happen due to being on the eye and the forehead. Then I think of her future.

I have an empty feeling in my stomache -- i'm the dad who can't fix it.

help?
what do I do first.

I could not be happier if I went to a doctor and they said... ---- well, no its not PWS... it is ________- and it will go away in a few months.

I'm in Texas.

thanks
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  #2  
Old 02-23-2007, 01:45 AM
samanthasmom samanthasmom is offline
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Hi. I just want to say that I know how you feel. I am the mom who can't fix my daughter's PWS. I am married to the dad who can't fix it either.

When Sam was first born it was a complete shock to realize that these marks on her face and body were not bruises from a rough labor/delivery like we thought. Then we found out they are permanent marks. She is our first child and we didn't know how to handle it. Sam's pediatrician basically counseled us from hour one to concentrate on the love and nurturing that she needs as a newborn and take the rest as it comes. At first we had moments of total fear for what our little girl's future might hold (cruel kids, etc,) but four months later I can tell you that it does get easier to deal with. Samantha's marks are breaking up and are way lighter than when she was born. She hasn't even had her first treatment yet. She still has a way to go, but it is not nearly as bad as we first thought. Also, thankfully and most importantly, she is totally healthy and happy!

You will do whatever you have to so that your baby is well taken care of by any specialists she may see and has the best chance for success in any treatment you may choose for her to have. You already are doing something for her by looking into the possibilities. I think that all the bad stuff you see online scares the crap out of you and in most cases it is worst case scenario. My husband and I made a pact not to look at or listen to anyone but Sam's doctors who know her individual case. That way we didn't freak out for no reason.

Good luck to you and your family.
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  #3  
Old 02-23-2007, 03:41 AM
kck kck is offline
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thanks...

So Dr. Levy is in Houston.... The Texas Children Center???

I've read, talked to my friend --- he is a great doctor to see?
any thoughts?

I'm in Austin --- if there is anyone in Austin and has the same knowledge, skill, resourses... well great --- BUT nothing will prevent us from going to the best doctors/ best resourse....

I'm just trying to figure out what or who is the best.

I'm hoping/praying for the best and that the ONLY thing wrong is the red spot. I figure we can deal / work on that --- but, I'm scared about all the other things that can occurr because of PWS.

Doing tests, MRI, etc -- many or all of the other complication can be ruled out or successfully treated??

Just currious -- is there anything that we have to wait on because she is only 2 weeks old?

thanks!
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  #4  
Old 02-23-2007, 11:41 AM
missy missy is offline
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So many many people have a port wine stain with no other complication... why invite the bad thoughts in before there's a place for them?

I can't think of much you'd have to wait on because of her age, except maybe laser treatments. I do think most docs will wait until she's a little older to start those, if that treatment is appropriate.

Dr. Buckingham is in Austin:

Edward D. Buckingham, M.D.
13376 Research Blvd. Ste. 124
Austin, TX 78750
512-401-2500
info@buckinghamfacialplastics.com
www.buckinghamfacialplastics.com
Facial Plastic and Reconstructive Surgery
Specializing in proliferative and involutional hemangiomas, port-wine malformations, lymphatic malformations, venous malformations, and A-V malformation

Missy
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  #5  
Old 02-23-2007, 03:48 PM
kck kck is offline
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thanks...

I made an apt for next week....

so, I'm assuming Dr. Buckingham is a "great" doctor for PWS? Anyone have any opinions on this? I would just assume I would get a second opinion???
BUT would love not to do that or worry about a 2nd oppinion.

I'm trying to learn as much as I can --- as fast as I can.

Any advice on anything you can offer to a person who just realized what PWS is and assumes his baby has it.... would be very appreciative.

thanks
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  #6  
Old 02-23-2007, 03:58 PM
nickbar nickbar is offline
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After your appt. with Dr. Buckingham, if you feel you need another opinion..then go for it. Dr. Burns in TX al so has a great reputation and experience.

Has the mark changed? Was it present at birth? Please also see a pediatric Ophthalmologist.

Also, send details and photo if you can to the "ask the expert" on the home pg. of this site. Dr. Nelson would be a good option



Corinne
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  #7  
Old 03-05-2007, 01:02 AM
alexasmommy
 
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Hi. If you little one does have a pws, it sounds like the same location as my little girl.

Everyone gave you great advice. Please do see an eye doctor.

As for pws, I am a firm believer in the earlier the better. You need to know if it is a pws, and all your options.

I have heard very good things about Dr Burns too.

If you have any questions, feel free to email me directly. I have been where you are now. I had enough guilt and pain for the entire state. You are not alone...

Elena

alexasmommy@realityquest.net
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  #8  
Old 03-06-2007, 03:26 AM
robolynn29 robolynn29 is offline
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KCK - I'm in Austin as well. My daughter has extensive PWS all over her body. We see Dr Metry in Houston - she is in the same office as Dr Levy - both are FANTASTIC doctors dealing with PWS.

We opted not to go to Dr Buckingham locally b/c Dr Metry is at the TX childrens hospital and is a pediatric dermatologist instead of dealing with PWS on adults like Dr. Buckingham does.

When my daughter was born, we had several things happen in the first week. She had her eyes checked with Dr. Busse for glaucoma (he's ecentric and great) and had an MRI and MRI to make sure it was not on her brain.

Your pediatrician should be helping you get these appts by making phone calls on your behalf. The doctors in Houston are difficult to get in with and takes several months to get appts unless your dr calls to make the appt. My daughter's pediatrician is Dr. Cam Ngyuen with ARC on Anderson Mill Rd and went to medical school with Dr. Metry. Dr. Jennifer Cardwell on Capital of TX hwy also went to school with her. Both are great peds.

This is really hard news to digest and I understand that. Don't read horror stories, first work to get the tests done that rule out anything other than PWS. Once you do that then realize that its not that bad and they are doing wonderful things with lasers these days.

Other than her PWS, my daughter is healthy happy and one of the smiling-est babies around. People tell me all the time that she is beautiful and you know what? she is.

Robin
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  #9  
Old 03-07-2007, 03:22 AM
nickbar nickbar is offline
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I am not sure if KCK is still around... but an update... the birthmark was diagnosed as a segmental hemangioma
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Last edited by nickbar : 03-09-2007 at 04:25 PM.
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  #10  
Old 03-09-2007, 01:58 AM
jgm
 
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I understand your concerns regarding your daughter's PWS (or what you think is a PWS). My son has one and I too was very upset before learning more about it and having tests done. His is harmless and hers could be too There is also laser surgery if you so choose.
Good luck.
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