Hello and welcome. My husband and I have a 3.5 year-old son, Jordan, who was diagnosed with Sturge Weber Syndrome at six months of age. I wanted to share his story because it is optimistic and one of hope. When Jordan was first diagnosed, we were so eager to hear about someone with a good story….
On July 15, 1996, we received the best gift that God has ever given us: Jordan Ray. From a visual and developmental standpoint, all was perfect. About six months later, Jordan started having mild seizures. We believe he had three or four in a 24-hour period. Basically, his type of seizure has three signs: eyes deviate and pulsate to the left, his left arm jerks toward his body, and he just lays still. We went to our local emergency room, did a CT scan, and were told that he may have a birth defect known as Sturge Weber Syndrome. We spent the night and he was given a startup dosage of Phenobarbital. The next morning he had another more severe seizure, so we were taken by ambulance to Shands Hospital in Gainesville, Florida. The next 24 hours were so frightening. Jordan had an EEG, another CT scan, an MRI, and an MRE. We have never felt so helpless and dependent on strangers in our lives; we cried and prayed.
The minute we arrived at Shands, my husband went to the medical library to research SWS. It seemed like a good idea, but it was not. Everything he found on SWS was terribly grim, mainly because most of the literature discussed the worst-case scenarios, which scared us all the more. That is the main reason why I wanted to share Jordan’s story.
Finally after all that we were introduced to our pediatric neurologist, Dr. Bernard Maria, who confirmed the SWS diagnosis. We feel so blessed that he lived so close to us because he is an excellent pediatric neurologist, and is one of the leading researchers of SWS in the world! He has been so kind in explaining things to us and keeping us up to date on SWS…. So Jordan does have SWS, but thus far, it is only a small spot on the right side of his brain. Dr. Maria put him on a small dose of Tegretol and sent us home.
Everything was fine for six months. Then one week after his first birthday (July 1997), he had another 5-6 minute seizure with stroke-like symptoms which sent us rushing back to Shands (by ambulance again) and to Dr. Maria. Another CT scan revealed that the spot affected by SWS was dying due to lack of oxygen, but the good news was that it was still only a small spot. We were given one dose of a new drug treatment called Fosphenytoin, (which we hoped would alleviate any damage done by the seizure and the stroke-like symptoms), and increased his Tegritol dosage and went home the next day.
Four months later (November 1997), Jordan had his first common cold. His seizures broke through and he had three very short (1 minute, 20 seconds) seizures in one day. We are happy to report that we were calm this time and simply called Dr. Maria; (we think they may have been related to his taking a pediatric decongestant). We increased the Tegretol dosage, and he was back to his old self.
Thus far, that is Jordan’s story. After reading some of the other SWS stories ours seems quite simple; so far, anyway. We hope that his story gives parents who have just learned of SWS some hope. Jordan is doing wonderfully well! You would never know that he had SWS other than his infrequent seizures. He is developmentally normal and so sweet and inquisitive. We pray and hope to continue down such an optimistic path.
November 2, 2000 Update
Hello again. We thought it was time to update Jordan's story! He is doing very well. He has had no more than four seizures since we first created this website in December 1997; none of them very serious, and with quick recoveries. We also updated some of Jordan's tests about a year ago and everything seems to be the same, with no dramatic changes or growth of the affected area. We feel very blessed!
It has now been nearly 16 months since he had a seizure, which is a record for him! We also just recently switched his medication to a new time-release which can be sprinkled on food, plus he is on 1 1/2 baby aspirin per day. It may not seem like much, but having to give him medication three time per day to only two times per day is wonderful.
Jordan is in a theater class once a week and he seems to really enjoy it. He gave a small speech into a microphone in front of a group of 150 people for a show in May! We were thrilled! We feel so very blessed with any of his accomplishments considering only 31/2 years ago we wondered how difficult his life may be. If things continue this well, we are planning on starting him in K-4 in the fall of 2001 at a Christian school not far from our home. Again another ideal answer to prayer! He seems to be more than ready socially, developmentally, and physically. It will be much harder on my husband and me to let him go that first day! He loves to be with friends.
Through prayer, we continue to be very optimistic. Although we are realistic in the fact that SWS is somewhat of a walking time-bomb; it may not affect him too seriously, but if he has a stroke-like episode again it could be very devastating, espcially as he grows older and may not be able to recover so quickly. So for today, though he is a very normal four-year-old who is wonderfully talkative, inquisitive, and active, we are so thankful to the Lord. Psalm 127:3: "Children are a gift from God".
Thanks again for taking the time to read Jordan's Story. We hope it has been helpful and informative to you!
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