My son, who is six years of age has recently been diagnosed with ADHD. The consultant also mentioned SWS at the same time stating that his behaviour problems could stem from this condition. His PWS starts midway across the back of his scalp, contiues down the left hand side of his forehead down by his nose and upper lip. He has not had any seizures that i am aware of. He does complain of headaches and has terrible nose bleeds. He did have a MRI scan when he was about seven months old which came back negative. Could he still have SWS without the seizures? He has none of the other symptoms either? I'm concerned that he could develop problems now. It has took years to get some kind of diagnosis for his problems, they give us a 'label' and then leave us to it!
Shoud I get him another MRI scan?
I am really not sure where to go from here.
Hi,
My name is Hank 23 with facial PWS/SWS.
When your son had his MRI do you know if it was with contrast? With contrast is the best way to tell if he has SWS.
He can have SWS with no seizures, glaucoma, or KT.
I have none other symptoms except PWS on the Brain. I grew out of seizures when I was two and as far as I know I have not had any since.
I also did have ADHD when I was a child I still have ADD but it is Adult ADD. I had a lot of learning troubles going thru school. But that did not stop me from succeeding.
I think you should get an opnion from a nerologist about the headaches, it could be linked to SWS.
What part of the UK do you live in?
I know a few people in the UK that might know a good Nero, or Derm in your area.
I hope this helps and if you have any other questions please ask we are all here for you.
Hank
Hi Hank
Thanks for your reply.
We live in NE of England.
As for his first MRI scan, all we were told is that it was negative. That is literally it. No mention of anything else at the time. He was also tested for glaucoma as a baby but all was clear.
We always knew that he had some behaviour problems but we were always told that he would grow out of them. But now they say he has ADHD and Autism Spectrum Disorder as well. (I know I didn't mention it in my first post)
I am going to go back to my own GP and try to get some more answers and info and a referral back to the hospital.
I just want to do what's best for him. As do we all for our children.
I sent a email to a lady that runs the Europe section of VBF to see if she knows of doctor that might be able to probably diagnoise your son if he has SWS or not.
If she knows of a doctor Glenda or I will get back to you on how to get a hold of the doctor.
I do not know much about Autism, but I have seen one or two people on one of the groups I am on. I will see if I can find them and put them into contact with you.
Talk to you soon.
Hank
Here is the information from our friends in Europe and I'm posting it here - Thanks Nic (and Hank!) You can contact Nic at VBF Europe
http://vbfeurope.org or contact the SWS group in UK (see below).
I do get involved with children who have SWS as we have a good cohort of
kids having laser treatment for their port wine stains on the face. I
refer all my patients with SWS or those were the diagnosis may not be
confirmed to Dr Sarah Aylett our neurologist with special interest in
the condition. If I have some details of the child then Ican ask Sarah
if she knows anyone near to the family who would be able to advise or
see the child.
There is a website:
www.sturgeweber.org.uk
e mail: support@sturgeweber.org.uk The chair person is Jenny Denham and
you can contact her via e mail.