We have emailed our Boston doc to ask how to proceed forward. At this point, we are willing to travel to Boston if necessary. Oliver's cognitive development is clearly suffering from these seizures and now, the medication. We are very motivated to find a way to stop the spasms. We are praying Dr. Theile will give us clear direction on what to do next.
The options are limited and each one is rather complicated. The med requires an approved, enrolled pharmacy, which we don't have in Wilmington. It also requires signing waivers and getting an eye exam. The LGIT or the Ketogenic Diet would require travel and/or hospitalization. We don't want to go to Boston but, because we are already in the system and an active patient it is reasonable to think we could get the diet going more quickly there.
Please continue to pray for us as we try and make the best decision. Oh, and pray for that sleep tent to arrive soon!!! I never imagined I'd spend so much time thinking and praying about a tent :)
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