Hi to all who may read this. I am completely new to all of this. I had never heard of sturge weber syndrome up until 5 months ago. At that point I had my third chil a beautiful baby girl. When she was born her cheeks, left eye, forhead , nose, and the skin between her nose and her mouth were a dark purple. The pediatricians weren't sure at first if it was bruising from labor or a birthmark. After a couple of days the mark lightened to a dark pink color. She is now five months old and it has lightened in spots but still covers the same area. So far we have been to an optomitrist who said in one eye she is at high risk for glaucoma. We just had an MRI done and her pediatrician said that she does not have any hemangianoma on her brain but that she does have thick tissue around her brain which can be a sign of Sturge Weber Syndrome. So now they are telling me tha she will see a neurologist to evaluate her brain developement. I feel kind of lost. Everything I have found says that diagnosis is hard until they reach a year or even two years old, to be positive that they are having difficulty reaching their milestones. What do we do now? Ever since she was born she has been an incredibly fussy baby. She always wants to be held and she will cry so hard she starts gagging if you do not pick her up. I am wondering if this could be related as well. If anybody has any advice as to what direction we need to go in or anything we need to be aware of from personal experiences I would greatly appreciate it. Thany you at least for listening
Hello Ischwenke, and Welcome to the site.
You are in right place to find into on SWS.
I am 22 with SWS/PWS on my face and head.
Your Daughter has not had any seizure activity has she? When SWS is on the brain it causes seizures in some cases like mine, but I grew up of my suizures around the age of two and that if very rarea as far as I know.
You will notice when the Port Wine Stain (PWS) gets really dark when she is cring, or being anger, or active that is when her blood starts pumping and the PWS fills with blood. Do not worry it goes back to normal and she can not feel it because it does not hurt her.
She will have to have laser treatment if you want to remove the PWS.
What state do you live in? Some one on this site might now a good Neuro and dermatologist in your area.
Some of the parents on the site can help you with the fussy question, I do not remember when I was that little. The only thing I could think it is that she is a people person and likes to be attached to someone. If I where you I would tell the Nero about the crying very hard, I do not know if it would be possable to trigger a sezuire or not. That would be a good question for her/him to answer.
I hope this helps,
Hank
At this time she has not had any seizures. Her PWS does darken and lighten. I feel she isn't reaching some of her milestones. Like she wont hold her bottle, and she still can't eat solid food. She dosn't have any on her brain but her brain tissue is thick which brought the question of sturge weber syndrome up
Hi, where do you live? It sounds like the doctors are at least aware of SWS and are doing what they can to diagnose and treat your child. I'm no expert, but as a mother/grandmother it is my experience that some babies are just fussy. However, if there is something that concerns you, don't hesitate to consult her doctors. Also, it's been my experience that most 5 month old babies don't hold their own bottle or eat solid foods, so again, if you are concerned let her doctors know.
We have a support group at MSN Groups
http://groups.msn.com/Sturge-WeberSyndro...tsnew.msnw
Please feel free to join us. There are several parents and adults with SWS on the group (Hank's one of them) and they are very helpful and informative.
Please let us know if there is anything else you need.
Glenda
Thank you both for the information and support you have already been able to provide. We live in Oklahoma, and the hardest thing is while we are still going thru the diagnosis stage, the doctors freelt admit that they don't know a whole lot about SWS. So at thisa point I am just trying to stay positive and find out as much information as possible so when and if the diagnosis comes we know what to expect. Once again thank you both so much- Lindsay
Lindsay:
How is your daughter doing? Please let us know how things are going, and if there is anything we can do to help.
Glenda
Hi to all. Thank you so much for your concern and asking how we are doing. I have been out of the loop because my computer has been in the sop. Kennidee is doing well. We just had another eye exam and they bumped her visits up to every two months. Something about the blood vessels in her eye. The doctor wasn't real clear but I am assuming he just dosen't want to put me over the edge. Hopefully he is just being cautious. We are scheduled to see the neurologist next month to examine her MRI results . Thankfully still no ceizures, but she is still incredibly fussy. Other than that all is well and good. Talk to everyone soon. Thanks Lindsay
Lindsay:
Thanks for keping us updated. Be sure and let me know what they say about her eyes.
I'm glad things are going well otherwise, and no seizures yet! How old is Kennidee now?
Glenda
Thanks Glenda. Kennidee is 7 1/2 months old. We are finally going to another dermatoligist and will possibly start laser treatment soon. I am curious how much insurance will cover because this doctor is out of our network. But we will cross that bridge when we get there. I am assuming that kennidee's pws may not be that sever because it dosen't appear to be as bright of a red as some of the pictures I have seen. Although in pictures hers is more noticable and when she gets mad it turns purple. I am trying to scan a picture of her if there is somewhere I can post it to maybe be able to get some more input on the level of her pws. Thanks again Hopefully everything will go okay Tuesday. Lindsay
Lindsay:
Are you a member of the SWSC MSN Support Group? If so, you can start a photo album there and/or post pictures post pictures in your message.
http://groups.msn.com/Sturge-WeberSyndro...tySupport/
If you have any trouble accessing the group let me know.
Good luck on Tuesday. Let me know how things go.
Glenda