Cleveland Drug Trial

Life has been busy, busy, busy here.  This week has been full of medical phone calls.  In one day I was on the phone with four different doctors, multiple times, for multiple different issues with three phones around me.  Ridiculous.  I won’t bore you with the details but one of them had to do with the experimental drug we are trying to get Silas on.   We are headed to Cleveland on Friday to determine if Silas is a candidate for the drug trial EPI-743.  The doctor has to see Silas and evaluate him before deciding to include him in the trial.  I am nervous, hopeful, and always wondering: are we making the right choice?  Only in hindsight can we ever know that answer.  When you have a pretty hopeless medical case, it is unfortunately true that the doctors start letting you call the shots.  Why?  Because they really don’t know what to do with your child or what will work, so it becomes our job, which is pretty scary when you think about it because I don’t have a medical degree.  I just have to pray and trust and hope.  So off we go. Cleveland here we come. Dr. Parikh will be seeing Silas who is one of the top doctors in the field of mitochondrial disorders.   It’s a short visit with him in the afternoon, then next week we have another trip to Riley–checkup with ketogenic diet doctor, a surgical post-op appointment, lab draw, and spinal tap (Ick).

Keep Silas in your prayers, especially concerning the drug trial and seizures.   (Seizures are better some days, worse on others.  Still trying to determine if the diet is helping. Alertness is much improved.)

 

 

 

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