Blog Overview


Byron Pratt, age 11, has Cerebral Palsy (Right Hemiplegia) caused by a stroke before birth. In 2015 he developed seizures and a rare form of Epilepsy called ESES, neither of which responded to treatment with medications. On November 3, 2017 he had a Functional Hemispherectomy. He has had many other major procedures in his short life including surgery for exotropia in both eyes, tonsils and adenoids removal, Selective Dorsal Rhizotomy (SDR), Constraint Therapy, and heel cord lengthening. The recent posts are about the Hemispherectomy and what follows. Older posts about other procedures can be found earlier in the blog or by links in the sidebar.

Friday, June 26, 2015

Summer

Many people have written asking how Byron is doing after his second seizure and I’m happy to report he is doing very very well.

Twice a day he takes an increased dose of seizure medicine, which seems to be working.  At first I thought there were no side effects but with the increase I have noticed a few minor ones.

-He’s a bit more sensitive to lots of stimulation; noise, many things moving around at once (e.g. groups of kids), light.
-His patience is shorter; he seems to get frustrated more easily
-He’s a bit surly and grouchy at times.  This could be a factor of his age or the medicine, or both.

Summer will be busy and wonderful with 6 weeks of summer school, Saturday afternoon camp and daily morning activities at the beautiful Ashram where Bob and I both offer Seva.


Byron has an amazing life, surrounded by people who love him.  He has lots to do, plenty of food, clothes, toys and he is safe.  With all of the challenges children are facing around the world right now – we are so grateful for the life we lead, minor challenges and all.

Tuesday, June 2, 2015

I was much calmer than last time...

Byron had another large seizure this morning.  I went into his room at 7:30 am surprised he wasn't up.  Earlier, at 4:30 am, he woke me up to say he really had to go the bathroom  - TMI but you can imagine what that meant.   

When I entered his room at 7:30 his eyes were locked to the left, his left hand was shaking and he was mostly unconscious.  We gave him the emergency Diastat as we were instructed to do but it didn't work.  So I called 911 and we ended up at Catskill Regional Medical Center.

This Sullivan county hospital has had a bad rap over the years for being disorganized and not particularly sanitary.   Today everything was gleaming, bright and renovated.  The Emergency Room lobby was pleasant and spacious.  Everyone was very nice and check in was WAYYY faster and more organized then in Westchester.  Once again I am very impressed with the medical options up here in our little county.

The Emergency Room doctor was young and very nice.  By now, about 8:15 am,  Byron was semi-conscious.  All told he must have been in the seizure state for at least 60 minutes. 

We reached Byron's neurologist in Westchester right away (who by the way we just traveled to see yesterday with my glowing announcement of no new seizures and everything was going fine!)  

Byron's neuro increased the dosage of his medication and we all agreed that abdominal symptoms seem to accompany his seizures.  Any more middle of the night bathroom trips and I'll be sleeping in his room!  It is really good to catch these things right when they start.  I want to be on top of that because it would be better if the Diastat had worked and we had managed it at home.

The hospital released us pretty quickly, about an hour after we arrived, and we are home now.

Byron is sleeping like a log, much more groggy than after his first seizure.  

This is life now, another "new normal".  Byron's ophthalmologist once said to me when I was complaining about all the medical visits - "You must play the hand you're dealt"  And I am,  and we are getting better.  I was much calmer than last time.


Byron will be his old self soon - right as rain



Video of Seizure

I was asked by Byrons' neurologist to capture a video of the seizure.  Here is a small sample.  I publish this for those parents who may have children at risk for seizures, or teachers, so that they can see what one looks like.