WWW.sturge-weber.com
Angel613l@aol.com
This is a site created for my son Luis.
Luis is my third child, he was born on June 13, 1996. After a very short and normal delivery I got to hold my son in my arms it was the most incredible feeling. I was so glad that he was finally here so I could hold him and touch him. Even after having two children before him I still felt overwhelmed. I remember the nurse telling me he would have to stay with me for a little while because the nursery was not ready for him, I held him tight and counted all of his fingers and toes and checked him over. I noticed that he was a little purpleish but they told me to just keep him warm. So I did. after about 15 minutes they came and took him to the nursery and I went to my room I was very tired and just wanted to sleep, so I did for a little while. Shortly after I woke up the pediatrician came in and told me that Luis had what they call a Port Wine Stain that covered the left side of his face. I remember thinking to myself there's more coming and so there was. The doctor proceeded to tell me about a condition called Sturge-Weber Syndrome and then he started going on about all the complications involved with SWS. I was all alone, my husband had gone home to rest, all I can recall after that is crying and thinking I could lose my child.
I waited for Louie to return to the hospital and told him what the doctor had told me. He was so devastated that he did not know what to say. That afternoon the Pediatrician came back in with two other doctors. An Opthamologist and an intern. They talked about Glaucoma, seizures, Developmental delays and the possibility of strokes, then they started to tell me about all the tests that Luis would need to have done to determine if he did in fact have SWS. I felt like a building had just landed on me and again I was alone to receive this news. We took our son home after two days. Shortly after we got him home I was off and running to every doctor I needed to see. At 4 weeks old Luis had his first EEG. It showed a slight slowing on the right side of the brain. The doctor told me we needed to have an MRI done as soon as possible, so we did at 7 weeks old. The MRI came back normal, we were then informed that the test would have to be repeated at a year old. At this point I had no real answers to the thousands of questions floating around in my head. I knew in my heart that when Luis turned a year old and we had the MRI done again that the news would not be good. But in the meantime I had a normal baby, he crawled and talked and walked right on time and he did not have any of the seizures that I was warned were possible. I did not know what to do, should I be happy and not think about the possibility of SWS, or should I spend my time wondering if and when it will hit. I decided that I would face reality when it became a reality.
The dreaded day came and I had to take my son to NY hospital to have his MRI done, I sat with him through his test and took him home the next few days were hell I had to wait for the results. Well they came and my worst fear came true....My son had SWS the MRI showed the calcifications on the right side of his brain. I sat across from the doctor and I watched her lips moving but I did not hear her words I was in my own little world. When I finally came out of it the doctor had seen that I was confused and went over everything again. She told me that it was likely that Luis would have seizures and developmental delays, that he could develop Glaucoma and that I should prepare myself for a long and hard road ahead.
The next 4 months were nothing out of the ordinary Luis was developing normally and had not had any seizures I thanked God for every good day we had. Then on October 25,1997 Luis developed a viral infection and was running a fever of 104+ and vomiting so I took him to the doctor and they gave him a shot of Ferrigan. I took him home and three hours later he had his first seizure. We rushed him to NY hospital and he spent five days there before we could take him home. Coming home was a whole new ballgame now. We had seizure medications and had to watch him closely, I couldn't sleep for days. I would sit by his bed every night watching him to make sure he was ok, my life had changed totally after five days in the hospital. Now reality had really set in.
I tried to get through each day one at a time but the thoughts of him seizing again would not leave my mind. I had to do something before I went insane, that is when I decided that I was not going to let this disease control our lives any longer I prayed for the strength to accept my life as it was and go on living each day, one at a time. I did not want this to determine the rest of my life for me. It was my life and my sons life and I could not change things so I learned to live for today and look forward to tomorrow.
We went through the next year and a half without a seizure. Then on the morning of April 20, 1999 Luis had been up vomiting through the night and running a fever. I brought him to the doctor and he told me to call him at 3pm in the afternoon to see if he was still vomiting. He was. I checked in with the doctor again at 5pm and things had not gotten any better so we admitted him to the hospital in the hopes of preventing any seizure activity. He slept through the night and the next day when he woke up he was very weak and did not eat or drink anything , throughout the course of the day Luis was very lifeless and not responding to anything. He would look at me every once in a while but not answer me when I talked to him, the only movement and speech I heard from him was when his doctor came in to check up on him and he yelled at him to go away. At about 1pm in the afternoon I was trying to get him to talk to me and he would not respond, something told me to call for the nurse and have her get the doctor because he was just not acting right and this had gone on for a few hours. I was concerned but had not see any signs of him seizing (at least the seizures I was used to seeing with him) The nurse came in and I expressed my concerns that he was not responding to anything I tried, the nurse looked at him and turned to leave the room she said that she was going to call for the doctor to come and check him out. As I waited for the doctor to come in I turned around to find that Luis had just started to seize, I quickly looked at my watch and then screamed for the doctor in about ten seconds the room was filled with doctors and nurses The nightmare had come true again.
Luis was experiencing a lose of movement on his right side his doctor was concerned about a stroke, his neurologist was contacted and luis was then transferred to our local trauma center. After 4 hours in the emergency room and a number of tests they admitted him and he was brought to a room. The next few days they did all kinds of tests to determine whether or not he had had a stroke,the doctors were very concerned that Luis was sleeping for 20 hours a day and that they could not control his seizures. They decided to do a 24 hour EEG that turned into a 48 hour EEG, and after all the tests they still could not figure out what was going on. Finally after 8 days they were able to control the seizures. They had ruled out a stroke. Finally we had some good news, Luis had started to wake up more and more as the days went by. Now our concern was he could not walk or hold a cup with his right hand, they started him on PT & OT in the hospital but at first it did not seem to be helping and Luis was becoming frustrated at not being able to walk or use his hand. Finally after 12 days in the hospital we were able to take him home. He had been 48 hours seizure free and was more coherent and responsive. We were going to take our son home and I could not be happier, when we got him home the real work would begin, he could not walk up the stairs that 2 weeks earlier he would have climbed with no problem and he was still unable to hold things in his right hand. As the days went by I watched as Luis struggled to complete the simplest of tasks. He was having trouble picking up objects and holding on to them. It broke my heart to watch him get so frustrated by the lack of contol he had over the right side of his body. With some time, a lot of patience and after receiving PT & OT he has regained about 85% of what he lost back and I am happy about that. As time has gone on he is getting better and is able to do the things that had come so easily to him him once before. We are still not 100% and may never be but we had our son back and for that I thank God each and every day.
Shortly after Luis was released from the hospital, I joined a support group started by the SWF. I needed to talk with others that knew what my son was going through now and what could happen in the future. I have learned so much more about SWS then I ever knew before I joined the support group. I have learned just how important it is to have support. It helps you through the hard times and it gives you someone to share the good times with as well. I have met many people through my group and I have grown to think of them as family. These are the people that will stand behind you and hang in there for the long haul.
I guess the most important thing I have learned from this is that each and every day is a blessing from God and who knows what tomorrow will bring. To date we are 5 months seizure free and counting. For me this has been a learning experience, I have learned that I am a lot stronger then I ever knew I was and I have to meet each new day knowing that I can get through the good times as well as the bad.
You must have faith and never give up hope, I know for me that is all I have. The hope that one day my son will grow up to be a man and have his own life and family and hold down a job and all the other little things that we take for granted everyday of our lives.
The uncertainty of the road ahead is a scary thing for me. I try to think of all the things that Luis has accomplished in the last 3 years. He has been a great joy in my life and I can't imagine the last 3 years without him. I know that there may be hard times ahead but I like to think of the good things he has brought to my life. I watch him grow and learn to do things that I was never sure he would be able to do like dress himself, learn his ABCs, and go to school. These are things that most people take for granted and as I see him accomplishing these things it makes me realize just how lucky I really am.
