Weaning from the steroid so far....

In case you are unaware Toby has so far only ever responded to steroids in the 10 months he has been having seizures. Even when on extremely high doses Toby has never had one day without a seizure of some kind and his best day has still incorporated at least 10 seizures. The ACTH has successfully stopped the spasms which I have shown on YouTube this is fabulous news in that these awful type are the ones which delete all the knowledge that toby takes in and therefore make hin lose vital learning skills. However steroids suppress the immune system have made him gain 2.5 kgs in a matter of weeks and have made food his only waking interest he had to come off slowly..... February saw Toby graduallly reduce his medications and start a new cocktail.... The first week was amazing Toby's attention came back new words appeared and he has a new lease of life! Still having the odd myoclonic seizure Toby without doubt at his best in a while..... Week 2 and three became a different story, a living hell for all involved most of all my boy Toby ......