Steven's story begins in July of 1997. He was a normal healthy baby, everything seemed fine. I was so happy to have him, although being a single mom, I knew I was ready for my little angel. I took him home and it was quite an experience having a newborn, but I loved it. Steven was about 3 days old when he started acting a little wierd. He wasnt crying as usual when I gave him a bath, and he was eating a lot, more than usual. When he wasn't crying a little while later that day and just kind of limp, I knew something was wrong.
I took him to the ER, and they realized his glucose level was at 2, he almost didn't make it. He was in CHOC NICU for 3 weeks until his blood sugar was stabilized. When he came home, I had to wake up every 3 hours and prick his little toes and fingers to check the levels, and I thought this was the worst thing I would have to go thru. His sugar level maintained and I never had another problem with it, so i was thinking "now I just move on, and see my baby grow up"... I was so wrong.
When Steven was about 1 year old, he was laying in bed after a bath, and his hand kind of just jerked out quickly. I tilted my head, not knowing what he was doing. A minute
later he did it again, and then again. I took him to the ER, having NO IDEA what I was in for. They said he had had a seizure and put him on phenobarbital. Funny, cause now looking back, they didnt even do any tests to know for sure it was a seizure, they just put him on meds.
Anyways, we tried different doctors, hospitals for 4 years, No explination, just that
he had seizures. I hated this, I wanted to know EXACTLY what was wrong. Finally, I took Steven to UCLA ped neurology. His epileptologist there, told me right away, it was LGS (Lennox Gastout Syndrome). I didnt know what to think, I asked her if he was going to die. She said no, but explained the syndrome to me and that it was not good, and he would more likely regress as he got older. For the longest time I didnt want to believe that he had this. I always would say that he didnt have it that bad, or he just had a mild form of it and that is because I didnt see any signs of it.
Over the next 12 years, I slowly was loosing my smart, bubbly, funny little boy. He went from singing songs, to not singing at all. From knowing how to spell over 100 words, to barely spelling 10. He used to smile so much, to hardly smiling at all. It has been so hard to see this. I see other kids, playing football, riding skateboards, and now teenagers having their first junior high crushes..and i know that my son will never do this, it makes my heart break for him. We have tried almost every AED there is, maybe except 2 or 3. He had the VNS implanted in 2004, which never really did much. In April of 2009 he had his first part of the Corpus Callosotomy resected. Then in May 2010 he had the second part done to completely remove the corpus callosum. It has only been 3 weeks since surgery so I am crossing my fingers that it helps this time.
As a parent, this is the hardest thing i have ever had to deal with. Not so much the syndrome, just seeing my baby have to hurt, and to see the seizures take over his life. It's so hard when he wants to play at the park and I cant let him go on the slide because I am so scared of a seizure. When he begs me to go outside an play, but it is too hot and the heat will trigger a seizure. When he wants to spend the night with his aunt or uncle, but can't cause the seizures are so scary for someone who isn't used to them. Having to make decisions like having brain surgery, twice, not knowing what the outcome will be or if he will ever speak again. Wondering if the meds are just killing his insides, or having to deal with it when a med is toxic to him. This is the life of a LGS parent.
Now, Steven on the other hand...he is just a happy boy. I dont think he has any clue how ugly this syndrome is, and I try to keep it that way. He knows he has seizures, but I have never made him feel any different than any other kid. Even his helmet he wears, he thinks its the coolest thing ever!! He is going to be 13 in July, and it does get a little harder, for me, but for Steven (he is mentally about 4 or 5)... its just another beautiful day. He always tells me "mom, Jesus healed me"...and he believes it too, and so do I. I am so
thankfull for him, he changed my life and I would do anything for him. As far as LGS, i will keep fighting and do whatever it takes to make my sons life the best it can be.
