Need help determining if infant son's BM is a PWS! - Vascular Birthmarks Foundation Forum
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  #1  
Old 01-28-2006, 04:39 PM
bluebee
 
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Default Need help determining if infant son's BM is a PWS!

I'm so glad I found this board.

Two weeks ago I gave birth to our first baby (9lbs, 9 ounces of drug-free labor fun!). When he was born, he had a red spot on his forehead. Initially, the attending OBGYN thought it might be due to his coming out the birth canal with his hand on his head (ouch). This theory was struck down the next day, when the mark was called a stork bite. At his one-week pediatrician appointment the nurse practitioner thought it looked more like a PWS, but was on the fence. At his two-week appointment, the pediatrician supported the PWS analysis.

Here is where everything gets frustrating. The pediatrician recommended taking him to a vascular surgeon for a head scan and assessment but was unable to tell us where to go (I'm in Albany, NY). She suggested a plastic surgeon as an alternative. It seems to me that a vascular surgeon is the most logical bet, or at least a dermatologist. It was amazing how UNHELPFUL the doctor was. You don't mention "Brain Scan" and "I don't know where to send you" to a new mother in the same 5 minutes... it's a little criminal!!

My insurance covers a lot of doctors through out the states (Aetna non-HMO). I am VERY open to bringing my little guy to NYC (we have family there to stay with). At this point, I just want him to have competent treatment. I want someone who is very familiar with these types of marks. I don't think I am going to find that locally.

I've attached some photos done with flash-- that flash emphasizes the mark. Well meaning relatives keep telling me it is fading... but it's not. The size, color, and distribution are the same. It gets darker when he cries and is the lightest when he nurses. If I pinch the mark diagonally, it disappears. I guess that is me cutting off the blood supply!! (the other marks on his cheek are from his baby nails! oops!)

As a new parent I am a bit overwhelmed at how little our pediatrician knew about his birthmark. She claimed he was the first child in 2 years to need to see a vascular surgeon (way to make us feel bad). Any advice that users can give on the following would be INCREDIBLY appreciated-

(1) In terms of PWS, who are the best doctor's in the NYC area? And do we stand a chance of getting an appointment soon... or are there long long wait periods?

(2) Does anyone have a child (relative/self) with a PWS in the same location as my son? Did it lead to any other complications RE glaucoma or brain issues?

(3) Does anyone have experience with having a PWS removed from an infant? I know that in the giant scheme of the universe, it is not the end of the world, but I would love it if my little guy did not have to bear the stigma of being different. The world is cruel enough. I wish I could* take it off his face and put it on mine. I'm sure every mother wishes this.

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  #2  
Old 01-28-2006, 04:49 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re: Need help determining if infant son's BM is a PWS!

Congrats on your new little bundle of joy... he is adorable.*

YOu are in the best location and have many options with some of the top vascular specialists in the country/world.* I think Dr. Williams is close to you. Dr. Edwin Williams, MD
Director of Williams Facial Plastic Surgery Center
1072 Troy Schenectady Road
Latham, NY 12210
518-786-7000
www.williamsfacialsurgery.com

The other options are in NYC:

Dr. Milton Waner
Dr. Alex Berenstein
Dr. Gregory Levitin
Vascular and Birthmark Institute of New York
1725 York Ave.
Suite 2E
New York, NY 10128
212-987-0979
Contact office for e-mail addresses

Specializing in LASER:
Dr. Roy Geronemous
317 East 34th Street
New York, NY 10016-4974
212 686 7306


These specialists can determine the birthmark type for sure.*

If you go to resources on this website, then find a physician... there are many listed for NY. All of them can diagnosis this for sure. Because your son is so young, I am not sure if it is or isn't a pws by looking at it. Continue to document changes. Let us know if you see changes. I would call and make an appt. with a specialist soon. Yes, it is possible to treat an infant with a pws (or hemangioma). Laser will probably be the course recommended by the specialists.

Good luck and again congrats.



Corinne




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VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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  #3  
Old 01-28-2006, 06:54 PM
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swsc swsc is offline
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Posts: 95
Default Re: Need help determining if infant son's BM is a PWS!

Hi, congratulations on the birth of your son.

My grandson has Sturge-Weber syndrome (SWS) and accompanying facial port wine stain. While some PWS can be indications of conditions like SWS or Klippel-Trenaunay syndrome - just to name a couple - this doesn't mean your son is affected or will be affected. Many people have PWS and no other symptoms or syndromes. Due to the diagnosis of SWS, my grandson has yearly eye exams to check for signs of glaucoma. He also has other symptoms related to SWS, but is doing very well.

However, you mentioned that your doctor recommended a "head scan". Did she say specifically what type of head scan - like an MRI with contrast, CAT scan, etc.? If so, these are typically done by a Neurologist. Also, for treatment of a PWS, a plastic surgeon or dermatologist typically handles this area, as laser treatment is used for PWS.

Please feel free to contact me at any time if you need more information or would just like to talk. You can visit our website at http://swscommunity.org (Sturge-Weber Syndrome Community - branch of the VBF) and we have doctor listings or can give you referrals from other patients/families in your area.

Please let me know how your son is doing.
All the best,
Glenda, SWSC/VBF
swsc @swscommunity .org (no spaces)
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  #4  
Old 01-28-2006, 07:28 PM
bluebee
 
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Default Re: Need help determining if infant son's BM is a PWS!

Thank you both for such fast responses!

Corrine: Dr. Edwin Williams is very close by and covered by my husbands insurance (CDPHP), I will try and schedule a consultation with him ASAP.

Glenda: My doctor was not very specific RE the "head scan" ... she just said that because of the mark's location, she wanted me to see a vascular surgeon and that the surgeon would want to do an MRI. She then told me that the place she wanted to send me did not look at infants and suggested a plastic surgeon. This confused me because I did not think a plastic surgeon would do a head scan, just treat the visible aspect of the problem. Of course I could be wrong, I am TOTALLY new at all of this. Did you grandson have his PWS removed? I am off to look at the site you posted.

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Old 01-28-2006, 08:10 PM
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swsc swsc is offline
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Default Re: Need help determining if infant son's BM is a PWS!

First, let me say that I'm not an expert or qualified to give medical advice of any kind. I can only tell you my experiences. Also, please know that this is a lot of information to absorb. I know how overwhelming this can be. Please know that we are here for you, and if there is anything we can do to help you, please don't hesitate to ask. You can contact me anytime, day or night. My contact info is on the SWSC website and you can reach me at that phone number.

Here is how I understand the process, but keep in mind that I can be wrong and you really need to ask your doctor more questions regarding this. It is my understanding that in issues of PWS that might affect the brain, like SWS, a pediatric neurologist or neurologist needs to be consulted, as a vascular surgeon might not deal with areas of the brain. SWS affects the outer layer of the brain, and even in the most extreme cases of SWS (and I emphsize extreme) where surgey on the brain is required, a neurosurgeon would most probably be consulted. I would encourage you to consult with Dr. Anne Comi - you can find her info on the VBF home page "Ask the Experts"column or on the SWSC website. She can explain exactly what you should be looking for and what type of doctor is needed.

Also, my grandson started having laser treatments around 1-2 years old, and he is now 11 years old. His PWS will never go away, although he has had some good fading. Most cases of PWS will never truly disappear, and will proably require periodic* maintenance treatments. It can depend on the size, depth, location, etc. Each patient is different, so there are no real absolute answers.

Hang in there and let me know if I can do anything for you.

Glenda
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  #6  
Old 01-28-2006, 09:56 PM
bluebee
 
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Default Re: Need help determining if infant son's BM is a PWS!

Thanks so much for the kind words Glenda. I am trying my best to stay positive. It is hard to absorb. I think all mothers blame themselves to a degree. But my son needs me to be strong for him, I'm his advocate!

I'd love to hear from others who have had experiences w/ lasers on infants. After reading posts from adults with PWS's, if it is what he has I think we will pursue it. It seems like early intervention = better results down the line.
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Old 01-29-2006, 02:30 PM
juliemn juliemn is offline
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Default Re: Need help determining if infant son's BM is a PWS!

Welcome! What a beautiful baby!! Isn't it fun??

We began laser treatment with our son when he was about 14 months old. We may have started earlier...but he was not diagnosed until 12 months. His PWS has followed (from what I'm told) a not often seen progression....rather than being obvious from birth.

You'll find both ends of the spectrum of advice when it comes to laser treatment and when to start. There are a lot of parents that advocate early treatment. I fall in that category myself, but it is a personal choice and something left to you and your doctor. As for age? I see many people starting treatment around the 6 month mark. This is due to the anesthesia...most docs want a certain weight or age achieved before they use GA on an infant. And yes, for those of us who advocate early treatment it is because of better results...and possibly a less number of treatments. PWS can't be removed...but laser is a very good defense against the side effects that can happen in adulthood. My son Ben, has a page dedicated to our decision to treat...and what we actually go through when we go to the hospital each time.
Ben's Laser Treatments

But this may be putting the cart before the horse...so to speak.

I think that a 100% correct diagnosis is definitely your first step. Make sure and keep an eye on the birthmark for any changes. PWS is always flush with the surrounding skin. If the birthmark raises above the skin, he may have a completely different type of vascular birthmark.

I think the fact that your family doctor even knew to suggest a brain scan is a point for them. And welcome to the world of vascular malformations. It can be frustrating...and many of us find ourselves educating our family doctors. The best part is that once they've travelled the road with us...it will be much easier for the next patient in a similar situation.

A neurologist rather than a vascular surgeon, as Glenda said, would be my choice here, but that's just my own opinion as a mom with a child who has SWS. They can determine if an MRI with contrast is needed. Babies who are symptomatic usually have imaging done very early. Forehead involvement is also a marker for an early scan to rule out SWS, but forehead involvement does not mean that there is SWS, it's just one of the markers that instigates caution. Sometimes in very young infants, the doctor will choose to wait if they show no signs of SWS. MRI scans in early infancy are not always conclusive, and very often end up being repeated when they get older because of this. This is just what I've seen happen...the neurologist is of course the person to answer your questions more thouroughly.

And Glenda is a wealth of information if there are questions about SWS in general.

You have a lot of options in New York. It really comes down to who you are comfortable with. The doctors listed here from NYC, of course will be able to diagnose your son correctly. There are many who travel to see these doctors, you are lucky to live near there. And yes, they are very busy...but usually can get a consult in within a couple of months for non threatening vascular marks. Don't be afraid to look closer to home...any doctors listed here, at the sws community, or on birthmarks.com find a physician page are a good starting point too. They may be able to see you sooner.

Good Luck! This can be overwhelming in the beginning...but it sounds like you are on top of things!

Julie H
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Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #8  
Old 02-09-2006, 03:53 PM
Jackson19
 
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Default Re: Need help determining if infant son's BM is a PWS!

Hi,
Our son was also born with a visible pink/red mark, but on his upper lip extending to his nose. At the three week mark there is still no change, but so far neither the pediatrician nor the 3 dermatologists who have seen him can say for sure what it is. Apparently there are Hemangiomas which can also remain flat, or so I've heard. We have an appointment with a Vascular Birthmark Clinic tomorrow morning in Virginia and are hoping to get a better diagnosis. I'll keep you posted on what they say, since we seem to be in similar situations. Our son's pediatrician told us it was definitely a hemangioma and sent us home with no follow up plan or information and basically said "there are worse things, so get over it". We have had to pursue this completely without his help! So you are lucky that at least your doctor recommended follow up.

Let me know what they tell you in N.Y. I am curious if they do any testing to tell or just diagnose based on visual. I am trying to educate myself about this whole issue and am grateful that there are lots of resources on the internet and other people who are experiencing similar situations and willing to share what they've learned.

Dennis' Mom
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  #9  
Old 02-10-2006, 12:29 AM
bluebee
 
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Default Re: Need help determining if infant son's BM is a PWS!

We have our appointment with a specialist on Monday- I will post what we find out!!

I hate it when doctor's minimize our concerns, especially as parents. How can you NOT be concerned!!!

Hang in there!!!
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  #10  
Old 02-13-2006, 03:17 AM
kiddiemom3
 
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Default Re: Need help determining if infant son's BM is a PWS!

Hi,

Congratulations! Cute baby you got there. I would suggest that you write down everything that comes to mind that you would like to ask the doctor since when you're in the office you sometimes get lost and forget whatever you wanted to ask.
(Hope this advice isn't too late)

Sincerely,
Kiddiemom3
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