Friday November 11th Update

We had a visit in Huntsville with Dawson's Neurologist this morning . Everything went well and she continues to be amazed by his progress. As figured, she wants to address the seizures that are still occurring. She said that she is very picky and persistent about these things until they are all completely stopped. We are very lucky to have a doctor who shows that kind of care and persistence.

The new drug will be Vigabatrin. The major side effect of this drug is that it can cause Peripheral blindness. Obviously we are very concerned about that possibility, but The Doctor said it is actually safer in infants than in older children and adults. She also said that the dosage amounts have a lot to do with it. She is using the drug currently to treat some of her patients, and not one have shown any visual side effects.

The drug is not FDA approved in the US yet ( It will be this Spring) and is made in England and shipped to Canada, which is where we will get it from. The process from ordering the drug and receiving it takes about 3 weeks. She wanted to give us the weekend to think things over and then let her know on Monday. The Vigabatrin is the first line of treatment for this disorder everywhere except in the USA. In the US the first go to drug is the ACTH which we've already done.

So here we go with another drug. Its very stressful putting all these drugs in such a young baby. Especially not knowing what they are going to do to him. But he has shown amazing tolerance to everything we have put in him so far. We are also going to up his Keppra again. We are going from 2ml to 2.5 ml for a week and then up to 3ml while we are waiting on the Vigabatrin to process. If upping the dosage on his Keppra stops the seizures , then we will not need to give him the Vigabatrin. Pray with us that his happens.

He is sleeping better now ( especially in his new Amby bed.) He slept a stretch of 6 hours last night. You can go to http://ambybaby.com/ and see what it looks like. If you know of anybody who has a baby that has trouble sleeping you can recommend this to them. It is a God send. I wonder if Amby Bed will pay me for the commercial here???

Because of prayer and the healing hand of God, with whom we give all credit, he is defying the odds. Thank you, and continue to lift him up.

We love you all !
Jeff and Allison