www.mowatwilson.org

nanamom · Joined: 10 Oct 2006 Posts: 10

Hello All

My name is Melissa and I live in Illinois, USA. My son who will be 10 in April was just diagnosed with MWS on Sept 28, 2006. I am trying to find a doctor in the USA that knows about MWS. My son's neurologist does not know any more then I do and we are not having any luck getting his seizures undercontrol and I was wondering if we ever will. If anyone knows of ANY doctors in the USA that know about MWS, please let me know. I feel like my husband and I are going at this alone.

Melissa

Dave C · Joined: 06 Dec 2005 Posts: 8 Location: Nevada U.S.A.

Hello Melissa,
I understand your frustration. You have to keep in mind that there are only somewhere between 200 to 300 cases of MWS diagnosed worldwide so finding a neurologist, or any other doctor for that fact, knowledgeable about MWS is very unlikely. To complicate things, trying to control seizures seems to be another hit or miss set of circumstances. What works for one person doesn’t work for another. Considering the complexity of the neurological workings I guess it shouldn’t be surprising. Unfortunately it comes down to trial and error and hopefully you find a treatment or combination of treatments that achieve the needed result. We have heard from a large number of people that have children with MWS that suffer from seizures and there is no consistent medication or treatment that has worked for a majority of them. I’m sorry I don’t have a more definitive answer for you, all I can say is keep trying different treatments and if you are not happy with the results, change neurologist. We did and are happy with the results.
Dave

nanamom · Joined: 10 Oct 2006 Posts: 10

Hello Dave,
Thanks so much for the kind words. We are on our second neurologist right now as it is. My son takes 6 differents meds a day. A total of 14 pills a day. 3 for his seizures and 2 for ADHD and 1 for a combo of the 2. We have been fighting these seizures for over 3 years now. He even had the Vagal nerve stimulator inplanted in June and still nothing. The fact is, it scares the He double hockey sticks out of me. I would just like to find a doctor or someone that know anything about this that can talk to me and/or my son's neurologist. Where we live it can take months to get in to see a pediatric neurologist because there is not that many around here.

Melissa

Dave C · Joined: 06 Dec 2005 Posts: 8 Location: Nevada U.S.A.

Melissa,
Have you considered taking him to a research center for evaluation? I found Children’s Memorial Hospital in Chicago on the web and it appears they have a Neurology Department. Here is a link to their site. http://www.childrensmemorial.org/depts/neurocenter/neurology/overview.asp
You can copy and paste it into your browser.
Dave

nanamom · Joined: 10 Oct 2006 Posts: 10

Dave
At this point I am willing to do anything. We have really bad days when we have to fight with him so much to take his meds that I just to give up. He just does not understand that everything that we are doing, we are trying to help him. He hates even going to the doctor because he is afraid that they are going to take blood. No child should have to go thru what these poor kids go thru everyday.