Saturday, February 21, 2015

Ben Update:

My Daughter's Ben Update: 
The Journey continues. I think this is what I will title this. It has been about 20 something days since the IVIG. We saw incredible changes in Ben the first 3 days. It was so miraculous, amazing, just WOW. The next few weeks were exciting to see this new Ben but also painful to see for seeing the symptoms return little by little. I think of those 3 days, as Gods gift to me, to show me not give up hope of what could be. The last few weeks many of his symptoms have returned but he is still better then before the IVIG. I was really sad on Thurs. This was our first trip back to Stanford for the doctors to check Ben out. That morning was the first time the imaginary characters came back. frown emoticon I went into the appointment with tears. Was so sad. But the doctors surprised me. They were excited. It was a two hour appointment lots of questions and checking out Ben. At the end Dr Frankovich was excited and happy. She said that decline was expected but the fact that he did so well the first 3 days, lead her to give him an official diagnosis of post infectious encephalitis (remember that PANDAS is not in the diagnostic books yet so we can't use that as an official diagnosis) She felt that the best plan of attack would be to do IVIG/steriod pulse every month for 6 months. Her hope is that what we saw the first 3 days will get even better and better and the decline will be less and less until he will hold at a good place. So my wonderful friends and family, continue to pray. I love each of you so much for caring for my family the way that you do! heart emoticon

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