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  #1  
Old 10-26-2005, 10:58 PM
silvrwood
 
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Default Newborn with PWS over Half Body

I have a 2 week old son who was born with PWS covering half of his body. It is currently light but pervasive over the most of his face except perhaps his nose and part of his forehead, and it covers the right half of his torso, his buttocks and crosses to his left leg. Is anyone familiar with such extensive PWS? I have been told by the doctors that because it is on his face/head he will have to be watched for signs of seizures or other affliction to the brain, and that he will have to be checked for glaucoma. And that because it extends down his spine he will have to be watched for spinal abnormalities that could result in paralysis (they started with an X-ray and will give an MRI if that turns up anything). They tell me that the parts covered by the PWS can grow larger than the rest & cause deformities.

They made it sound like laser treatment could be successful, but only on the face. Yet what I am reading here sounds like he will be fated to this varied appearance for life with temporary fading of it. The doctor did not say when treatment could begin, but it sounds like some here have started as early as 6 weeks. How did the baby react? What of the anesthesia on such a young one?

Has there been research on treating the nerves rather than the veins? Is there anything on perhaps hormones to settle the nerves so they don't send so much blood to the veins? Obviously I have no medical education other than what I read, but I would like to find out where research is on this condition. And is there any evidence of contact/exposure with anything causing these PWS? I wonder if we compare suspect conditions if we might see a correlation. These are things I wonder about:

1. I have a persistent case of what was considered ringworm but has not actually been cultured and has not responded to the typical treatment
2. The above was treated with Nystatin
3. The above was treated with a steroid triamcinolone acetonide cream
4. The above was treated with tolnaftate
5. Due to elevated levels of HSV I, even not of the genital type (Type II), I was treated with acyclovir
6. Due to my RH negative blood & the father's RH positive blood I received Rhogam
7. I work in a building that indicates it contains materials known to cause birth defects (how can this be legal?)

Are there other people out there with such extensive conditions of PWS? I would like to talk with such adults to learn what I can to help my son as he grows up in a society with such a limited view of beauty.
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  #2  
Old 10-28-2005, 12:43 PM
confused
 
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Default Re: Newborn with PWS over Half Body

I am not familiar with that extensive of a PWS, but can relate to the concern for risk of seizures, glaucoma, etc.* Our son is four months old and has a pws from his scalp to just touching his eye lid.* Our pediatrician scared us to death at first telling us he had a twenty percent chance of Sturge Weber syndrome.* We changed docs and went to see someone with experience with PWS and SWS who referred us to a pediatric dermatalogist.* The derm told us that even when children have the potential for SWS, it is very rare and even if they do have it does not mean that the worst case scenario will happen.* She told us that and MRI will not show anything before six months of age, but to report any change immediately. Our son also has to be checked every six months for Glaucoma. You should find an eye doc with experience as soon as possible.* You should also contact a specialist for consultation if you are considering treatment.* This website has a list of qualified specialists that you could contact. www.birthmark.org/physicians_list.php

The only treatment I have ever heard of having any effect is laser treatment.* I have no experience with this though as we have opted not to have our son treated, at this point in time anyway.* The derm did tell us that it was possible because our sons pws is low grade that he could possibly see 100% fading, but that every case is unique in how it responds.* All the docs i have seen have told us that there is no known cause or prevention of Port Wine Stains.

I am sure that someone with much more knowledge and experience than me will respond to your post.* Also you should check out the message board at www.birthmarks.com, there seems to be more activity on that site.
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  #3  
Old 10-28-2005, 04:33 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re: Newborn with PWS over Half Body

I would encourage you to send your questions also to the pWS expert on this site....and also to Dr. Mihm who is a pathologist researching vascular birthmarks.

I want to let you know that there is nothing you could have done or avoided or prepared for to stop a PWS. What is frustrating is that there are so many unknowns in this field. You have one person exposed to all the same elements...and NO pWS or other birthmark...then person two does. It really is hard to prove anything with so many variables.

What you to know we are here for you.

Corinne
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  #4  
Old 10-28-2005, 07:55 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Newborn with PWS over Half Body

Hi,

I am 23 yrs old with PWS/SWS.

I do know a few people that have anywhere from 60% to 90% of there body from head to toe with PWS. They all have Sturge Weber Syndrome (SWS) My personal opinion, (not a doctor) your son most likely has SWS. The only for sure way to find out is to have a MRI done with and with out contrast. Any doctor can get the tests lined for you. I would also contact the SWS expert to get that doctors opinion.

Things related to SWS is seizures, glaucoma, PWS, and KT syndrome. Among other things these are the biggest parts of SWS. With PWS on the legs or arms can have KT syndrome. If you are intersted in reading more about me you can go to my website www.hankspws.com I have several links on my links section that you can find out more info on SWS. Glenda (grandmother of a SWS child) has a website that is linked off of this website that deals with SWS. Her address is on my website as well as others.

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

Talk to you soon,

Hank
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  #5  
Old 10-31-2005, 04:54 PM
silvrwood
 
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Default Re: Newborn with PWS over Half Body

I am taking a quick moment to thank everyone for your responses. I am a bit overwhelmed by the information at this point, and rather than allowing myself to become depressed by it - I am going to take a break on the data and focus on healing energy. I'll be back with more questions when I have prepared myself a bit better.
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  #6  
Old 11-01-2005, 04:33 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re: Newborn with PWS over Half Body

I understand, this is way too much too soon to try to take in. Enjoy your sweet newborn. We will be here for you whenever you need.

HUGS

Corinne
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VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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  #7  
Old 11-19-2005, 08:18 PM
meganm
 
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Default Re: Newborn with PWS over Half Body

Silvrwood -

Not sure if you have come back or are still taking time. I am in a similar situation as you, our 3 month old daughter has an extensive PWS. when we found out, we read everything we could and it was overwhelming, confusing, scary and depressing, so I turned off the computer for a while. It was nice to do the research so we asked the right questions to our doctors, but it also scared us too much at a time when we should have been playing with our beautiful newborn (don't get me wrong, we still had many great highs with her in those first weeks, but there were also many lows and tears I wish I could forget). When our baby was 2 weeks we saw a pediatric dermatologist who made many of our fears go away. Finding a knowledgeable doctor who has seen many of these is key!! Our pediatrician had never seen anything like it and totally made us feel worse, the specialist made us feel great. We now have a treatment plan and that makes us feel better -the unknown was the worst of all. I still stayed away from looking at the internet and have only come back this week after our daughter Kate had her first test of the laser treatment. From what I understand, every patient is different, so just make sure you go to good doctors, get second opinions, and learn what is right for your son alone. He will be a unique case with his own individual symptoms and treatment plan.

Kate will be 3 months old next week. She has PWS on about 1/3 of her face (chin, cheek, jaw, temple, ear, 1/3 of her scalp), down her neck, left shoulder, upper part of her back, upper part of her chest, and her entire left arm and left hand. It crosses the midline on her chest and neck which the doctors tell me is rare, it usually stays on one side of the body only. Sounds like your son's also crosses the midline. Our daughter's PWS is also pretty faint right now, like your son's, and I don't know if it'll necessarily get darker or not. Our doctor recommended laser treatment as soon as possible before it gets darker. Our first treatment session is in January when she will be 5 months (technically they could have done laser right away, but he did not want to start sooner b/c hers is so big she'll need to go under general anesthesia, and he said he doesn't like to put such young babies under g.a. for an elective treatment. but at 5 months he was ok with it). We'll do lasers on her arm as well, not just her face. I assume we're doing it everywhere except the scalp which will be covered by hair, but I need to confirm that at our next appt.

We are also meeting with an opthamologist in January to see about potential glaucoma, but our doctor sounded hopeful that this was just a precaution and she probably doesn't have it (the PWS is not over her eye, but on her brow and temple near the eye so we need to go to the opthamologist just in case). When we put her under in January for the laser treatment we'll do an MRI to see if she has KT Syndrome (her left arm is slightly bigger than her right, if she has KT this could continue ot grow).

If she has SWS, or glaucoma or KT Syndrome we'll deal with it when we learn it from the doctors, until then we're living under the assumption that its just a cosmetic PWS that we can treat with lasers.

I too have taken acyclovir for my cold sores but don't think i took it while pregnant (maybe once?). But from what I've read there's no known cause, parents who have 1 child with a PWS then have others without it. Sounds like its random. Kate is our first born so of course I will worry with the next but the doctors have assured me that i have no need to worry.

If you ever want to talk or email please reach out. It helps to find people in similar situations and when Kate is older I hope to find other kids with PWS that she can talk to.

-Megan
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  #8  
Old 11-22-2005, 01:51 AM
misty72719
 
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Default Re: Newborn with PWS over Half Body

:-\ Iwould like to tell you that my daughter has a PWS on her torso wrapping around it. We were told some of the same things that you were told. However, we were Not told as much as you. They did tell us that we had to do the MRI of her spine due to it(PWS) crossing over the spine, we did the MRI and everything looks fine now. They told us that we would not have to worry anymore about her spine unless she was involved in a trauma that hurt that area. Now that she is 9months old we have began to notice that her Left leg is slighty larger than her Right. We contacted her Ped. and he reffered us to an Ortho and he has diagnosed her with Hemi-hypertrophy. Now its just a waiting game to see what we need to due when she gets older. (5-6Yrs.) We are having an ultrasound done to rule out Wilms tumors associated w/ this disorder. Hopefully that will turn out good. Please if you need to talk or if you have any questions, please email me mmelam@cox.net . Hope it helps to know that their are others out here. Im still clueless!!!!!
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