Hello. We have now started Stirpentol/Diacomit (STP). A med developed in France specifically for Dravet Syndrome patients. It was quite a process to get it. This med is not FDA approved. Because of the Trust, and our insurance company's denial of coverage, we ordered directly from Biocodex. The shipment was delayed in Memphis by Customs. Once more information was given, forms filled out, we received the med and started Margaret on a low dose on March 30. So far, so good. She has had 2 morning seizures since we added the STP.
For the curious, she is currently on Depakote ER(Valproic Acid) Celontin (methosuximide) and Onfi (Clobazam) in addition to the STP. I have been consulting with a good friend whose daughter has been on STP for a number of years, and she also suggested we even out her med doses. For years we have been loading her up at night and giving smaller doses in the morning. This morning I have changed all that, and now the only difference between am and pm meds is the STP. Keeping my fingers crossed.
This past year has been a challenge. There are so few programs available that are social based for adults like Margaret. A friend and I have helped start at program in West Des Moines called the YAC. Young Adults Clug. We have started slowly, with the help of the West Des Moines Human Services Department, and they are offering a place to gather and have an activity from 10-12 on Thursdays. Its a start. Margaret is loving it and calling the director, Sue, her teacher.
On Wednesday mornings she goes to the Jester Equestrian Center and has her one hour on the horse, which she loves. She loves the volunteers and the director, Deanne.
On Thursday nights she goes to the Access Bible Study at Lutheran Church of Hope. She really likes the teacher there, Cindy. Once a month they play basketball and she really enjoys that.
So basically every week she has 3 things to do that are scheduled. I have been so blessed thus far to have wonderful young women to come in and play with her, take her to Taco John's or their homes, and keep her entertained.
The dogs are doing well. Emma barks at every seizure, Monty will jump back on the bed and bark once he sees Emma is getting treated. He's a slow one, just a mellow, very loyal, loving dog. Not much for seizure work, though.
I plan to keep this up for those interested in the addition of STP to the med mix.