Update on Blake

Hi Roger,


Blake is not doing well. He was in the hospital for 18 days in June. He went in for a different treatment and while there his swallowing muscles became uncoordinated, and he was aspirating food/drink into his lungs. So he was treated for pneumonia and had to have a feeding tube. He is now solely fed through his tube. He recently had a swallow study that showed he was no longer aspirating but still had trouble coordinating those muscles and he refuses to eat and drink anything now, so is still fed through the tube. On July 9, he was admitted to the psychiatric hospital because he was uncontrollable. He stayed 5 days and they increased his medication. He is a little calmer, but still has outbursts and extreme oppositional defiance and ocd. Physically he still can't walk but has shown some improvement with fine motor skills. He talks but only to say opposite things - no real functional language.

We are going to John Hopkins in Baltimore Maryland August 2 for a second opinion. He has had two treatments that didn't work at all. Before he receives a 3rd more invasive treatment, his doctor wanted us to get the 2nd opinion to make sure he doesn't have something in addition to sydenham's chorea. Hopefully the doctor there can give some answers and treatment suggestions that will work.