The neuro surgeon we are under has always been a very straight person. He told us from the beginning that surgery may not be an option for Faith as her lesion was so large and he was concerned about causing further damage to the hypothalamus. He promised us that he would continue to research the best form of attack and confer with other surgeons around the world.
He is a very reputable neurosurgeon in our area and when Faith was first admitted to his hospital with a mild form of hydrocephalus, he performed a new surgery whereby he made a small incision between the two hemispheres in the brain to relieve the pressure that was building. This surgery prevented Faith from having to have a shunt. We have always had a lot a respect for him and were willing to listen to his advice.
In the mean time we tried a concoction of anti convulsing medications to no avail. She continued to have regular seizures some time as many as one every 5 minutes some lasting 2-3 minutes each. We seemed to initially spend every weekend in hospital as she would end up in status. She would need intravenous medication to sedate her in order for the seizure to stop. It was decided that we could give suppository Diazepam at home, unfortunately this was never enough for these status episodes and we would still end up with her in A&E. Due to this we tried Buccal Midazalam at home when we could see a cluster of seizures developing. Thankfully this seemed to work for her and we managed to end the seizure before it became too established. For some reason these clusters eventually became less and less as she got older, she would still have a large amount of seizures throughout the day but at least have some rest in between them.
When Faith was about 2 1/2years old we decided to try the ketogenic diet as at this time we felt we had tried every medication available to us and our surgeon was still reluctant to carry out surgery. The diet involved a lot of dedication, time and patience from all of us within the household which we were all willing to do, but Faith was not so sure. She already had a bit of an emotional tie to food, constantly wanting to snack or drink. The diet though was very strict and portions were very small and snacks were a no no. I was able to tinker a bit with her requirement of fat so I could make her special truffles which she could have for her supper. This was not enough for her and we had a very distressed little girl throughout the three months we tried it. The dietician had told us from the beginning that if the diet was going to work for us, we should see some change in her seizures within three months. Unfortunately we saw no change at all, so it was decided that we would wean her off it. A very happy little girl was able to enjoy her advent calendars at Christmas.
After that we became very desperate as her seizures were just increasing, so we approached our surgeon again. After telling us a definite no to surgery one day, he called us in to tell us he had spoken with a neurosurgeon in Canada, who was very positive about surgery and the benefits to it. So in February 2011 Faith had transcallosal debulking surgery where she had 2/3 of the lesion removed. It was the longest day of my life. They took her down to the surgery theatre at 9 o’clock a.m., and they called us to come to the recovery room at 17.00hrs (5:00 p.m.). She was very agitated at first with all the intravenous lines she had. The first two days post surgery she had one seizure, which over the next few days increased to one every hour and half. This was a great improvement for Faith, and we were just relieved that she was bright and alert with no apparent concerns following surgery.
At four years old and a year post surgery, Faith remains very bright and has a fantastic character and sense of humour. Her seizures have remained around an hour to two hours apart. Though most are only a few seconds long some can be 1 – 2 minutes long. We had obviously hoped for her to be seizure free following surgery, but any extension in the interval between seizures is a blessing.