We have returned home from the Neuro visit in Huntsville. We have the Vigabatrin now and will start administering it this evening. Dr Bebin said that we will know pretty quick if its going to work or not ( within a week or two.) She continues to be impressed with how well he is doing and how well his development is at this point.
If the Vigabatrin is working we will go back to UAB next week to have another VEEG done to confirm he isn't having seizures. In the meanwhile, she has instructed us to cut back on his Keppra. We will be going from 3ml back to 2ml twice a day. If after taking the Vigabatrin, and he is not having seizures, she said we will probably completely ween him off of the Keppra and go Vigabatrin only.
While we were there she informed us that the company who holds the patent on Vigabatrin is going to be in Birmingham next week shooting a training video for other parents who's children suffer from I.S and other seizures types. She asked us if we come and let them interview us as part of the training. We would be one of three couples invited and we would get to talk about what we have been through, what other parents should look for, ect, ect.
From the very moment she asked, we both felt like this was something we should take part in. I think it will be a great way for us to help other people who's children suffer from this. I hope that other parents will be able to see our faith through the video and be able to rely on the same Jesus that we rely on to get us through this.
She is going to call in the next few days and confirm everything but I certainly hope we get the opportunity to do this and give something back.
So hopefully the Vigabatrin is going to work and we pray now that we start seeing the rest of his seizures subside.
We love you all
Jeff and Allison
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