Finding more info

#1 01-16-2005, 02:18 AM

My sister just gave birth to a 6.5 lb boy who has Port Wine Stain on over 75% of his body.

I am trying to learn as much as I can so I have a better understanding of what she is dealing with.

Every thing I read on net talks about the face and neck with very little on majority of body coverage.

I understand they are concerned at the moment about eye problems and the baby is being taken to another hospital where more detailed test can by run (to determine what else may be wrong.)

In the meantime, I am wondering if anyone can point me to some net articles that may help.

Thanks in advance.

hankbartenbach · #2 01-16-2005, 04:12 PM

Hi Chief Nerd,

To start off, you are in the right place to start your search.

I highly recommend that your sister take her child for an MRI and look for Sturge-Weber Syndrome (SWS).
In most cases when a good portion of the body is covered with PWS, SWS is involved. Here are some conditions that run with SWS Glaucoma in the eyes, seizures, KT, and PWS internally. I have PWS on m face and it is SWS. Where it is located on my face and head it is on my brain on the same location. MRI will tell you if he has this or not.

I do know a hand full of people that have 60, 75% of their body covered and they all have SWS.
Infact Tweety on this board has 90%. You can find some of her post in the youth and teen section.

After you find out if he has SWS or not, let me know by a post or email, and I will send you more info, also Glenda on this site, has a website you could find some info on SWS, her grandson has SWS. It is www.swscommunity.org
That website is connected to this one.

I hope this helps, and if you have more question please asks, because this will be the begining of hard times for your family.

Hank

swsc · #3 01-16-2005, 04:35 PM

Hi. Congratulations to your sister on the birth of her son.

If you don't mind my asking, what hospital is the baby at, and are the doctors experienced with pws conditions? Have they mentioned anything specific or a certain disease to your sister in relation to the pws, as that information will make it easier to direct you to the correct resources.

There are several syndromes that can be associated with pws. Many factors need to be considered, including the location of the pws. If the pws is on the head/face, which areas does it cover? Also, what areas of the limbs and torso are involved? Have the doctors mentioned doing CAT scan, MRI or other tests ?

You mentioned the doctors' concern for the eye - have they mentioned anything specific like glaucoma? Has the baby experienced any symptoms that would be of concern, and have the doctors mentioned the possibility of pws conditions, such as Sturge-Weber syndrome or Klippel-Trenaunay syndrome?

There are several websites that deal with port wine stain and its affects. In particular, I work with the Sturge-Weber Syndrome Community, http://swscommunity.org (a branch of the VBF) and we would be glad to help you and your sister in any way we can.

Please let me know if there is anything else we can do, and feel free to contact me at any time.

Glenda
swsc@swscommunity.org

swsc · #4 01-16-2005, 04:37 PM

Hi Hank! I guess we posted at the same time! Thanks, and I hope you are feeling better. Be sure to keep me posted on how things are going for you. We are all wishing you the best.

Glenda

#5 01-16-2005, 05:03 PM

Thanks every body for the information so far...

I am not sure what hospital the baby is in or on the way to. I live in WV and my sister lives 8 hours away so the communications is not great (understandably at the moment.) Hopefully communications will improve shortly.

The father of the baby is an ER doctor so I am sure that he is going to have access to the right people to and run the correct test. It is just awkward and perhaps wrong of me to get involved at this juncture as I am sure they are handling things the best they can and do not need another person asking questions and giving suggestions. At the same time, I need to learn as much as I can so that I can be supportive and try to provide insight that will actually be helpful and not redundant of what they are going to be hearing over and over.

I am so glad I found this forum as I think this will be one of my best resources.

Thanks again everybody for your replies and I will get back to you with the answers you have asked and more details as I get them. I am also going to go and try and visit with family members to be supportive, but I am not sure who will be where and what I can really do other then to be there for them.... and my being there may or may not be helpful to them, I have not been able to weigh that yet.

Thanks again everyone!

swsc · #6 01-16-2005, 09:22 PM

We understand, and I'm sure your sister would be touched knowing that you are so concerned about her and your nephew. I think it's great that you are interested in his condition.

It's good to know that your nephew has a doctor for a father, and I'm sure he will see to it that all the proper diagnostic testing is done.

Please keep us updated on how the baby and your sister are doing. And please don't hesitate to ask if you have any more questions. The links on this site and swscommunity.org, should lead you to more information on pws conditions. However, until your nephew receives a proper diagnosis, it's hard for us to know which direction to send you.

I'm sure your family will welcome your support, especially your sister. Just being there to listen and encourage can do more for a person than you realize.

Good luck, and keep us posted.

Glenda

#7 01-16-2005, 11:34 PM

I am at the folks house at the moment and my sister and husband are here, so I think the best thing for me to do is to tell them about this website. I am sure you will hear from them soon.

Thanks again!
Jonathan

nickbar · #8 01-17-2005, 06:42 AM

I am so glad you found this website for your family. This will be a strength for them.

Sending you our thoughts and prayers.

Corinne

#9 01-17-2005, 01:55 PM

I have told her husband about the forum. Jeff I think took a quick look here last night but he is exhausted and did not have time to post, or possibly is having all this sink and his mind is understandably on overload.

They are going to the hospital today to see the baby. A full body MRI is going to be done tonight (holiday here so things are a bit slow for scans and so forth - at least that is what I am being told... but that is third hand.)

I have not been "officially" told what the syndrome diagnosis is, and I know this will make a huge difference in understanding more. As soon as I know more I will be asking more questions.

Now, a question... does anyone have any suggestions on how I discuss things with my sister. Is it just better for me to be there and make pretend everything is fine, or do I ask detailed questions, or find a place in the middle? I love my sister very much and I want to be as supportive as I can be (I would even drop everything and move in with them if that would help....) but I really want to avoid giving her any more stress or discomfort then she has now. I have not seen her since she had the baby but I will see her later today. Any thoughts?

swsc · #10 01-17-2005, 04:22 PM

Jonathan:

Just go with your feelings. It sounds like you and your sister are pretty close, so you can probably judge her mood and willingness to talk about things.

If she does seem open to talking about it, you might just ask what the doctors have told her, and let things flow from there. Just letting her know how much you love her and your "new" nephew will do more than anything right now.

Of course, we are here to support you - and your sister should she need us. Thanks for keeping us posted.

Glenda