View Full Version : Sanfilippo Syndrome

May 11th, 2004, 02:42 PM
I am interested in talking to parents or friends of families that have gone through the end stages of the disease. Grant turned 12 last November. He started having grandmal seizures about a year ago and even with meds still has about 2 a month. He has lost weight (from about 88 lbs. down to about 73). He no longer walks, sleeps often and for about the past 2 weeks has been running a low grade fever. He has had several rounds of antibiotics. The hospice nurse says this is sometimes indicative of the end. I pulled him from school abuot 2 months ago because he just didnt have the energy anymore. He cannot even sit or hold his head up much past about 5 minutes. I know it sounds strange but I just feel like I need to know whether we are near the end of his precious life. I have a daughter away at college and there are so many things to plan. We try to make him as comfortable as possible but dont want to miss doing something that we could do for him. Maybe someone who has walked this stretch of the journey could tell me about their experiences. Looking forward to hearing from you. Glad to be back at the forum.

May 11th, 2004, 03:06 PM
I wish I could help you with your questions but I am not familiar with Sanfilippo Syndrome. But I just wanted to let you know that I hope someone here can answer those questions for you.

Priscilla Raftery
May 11th, 2004, 09:04 PM
My son also has Sanfilippo, but although he is 15 1/2, he shows no signs of losing his battle with the disease. I think your best bet would be to contact Barbara Wedehase at the MPS society and ask her if she can put you in touch with other parents who have gone through this. I can think of several, some may still read this forum. It's just that it seems once a parent has lost their child, they no longer post here. I am so sorry you and Grant are going through this. I know you are being the best mom and making him very comfortable. You are in my prayers. Please try Barbara, I'm sure she can help 207.947.1445 ~ Priscilla