We are well, as I write this Drake has gone 18 days with out a seizure. We have been up to some good treatments so I am not sure if there is a silver bullet, but I think it is the perfect combination of helpful elements. Specifically we have been doing occasional HBO, a GF/CF and low grain diet, a new seizure medication Banzel and are 6 months post stem cells transplantation.
After seizure activity his mood and temperament can be awful, so for a quick fix I have been taking him in for occasional HBO (hyperbaric oxygen) therapy. What prompted me to do this? Last month Drake was in a bad mood for days on end. He was irritable, destructive and generally fussy. Not sure what to do I made an HBO appointment. He was an angel in the chamber and finally seemed content in his own skin. Soon after his smiles came back to his face. My goal now is to take him into the chamber every 10 days or so. We are so blessed to have a HBO facility 30 minutes away from our home. Drake has also had his first IVIG infusion on July 17th and goes in for his second this Tuesday. This therapy is all new for us. For years there has been literature out there on IVIG being used for epilepsy with amazing results. I will attach a link to one article (
http://professionals.epilepsy.com/page/inflammatory_immuno.html). Last but not least there is BANZEL (rufinamide) which is a prescription medication approved for the adjunctive treatment of seizures associated with LGS in children 4 years and older. Prior to now I had lost faith that any prescription medication would help Drake. The nature of LGS is that the individual suffers from life long seizure with little relief from any medication with a poor long term prognosis and a decline in intellect and behavior. So far we are NOT seeing any of the typical side affects that you usually see with anticonvulsants.
