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.

Sunday, November 20, 2016

A Good Climb!

With all the brouhaha around the seizure developments, it's easy to lose sight of little challenges successfully overcome.  Yesterday, on an unseasonably warm November day, Byron tried again to climb this rock wall in our backyard that has been vexing him since he was three years old.  Over the years I would let him give up before he got to the top  - but not today.  Today we worked on it until he got it.  Go Byron!

Thursday, November 17, 2016

No Seizures but Lots of Spiking

The results of Byron's recent overnight EEG came back and it showed that he had spiking almost continuously while sleeping.  According to his neurologist these nighttime spikes need to be controlled otherwise they can affect his brain long term and his ability to learn.  So  - in addition to Tripletal she put him on Keppra.  Keppra is well know to have behavioral side effects - rages, irritability, tantrums and on and on.  And we had it ALL!

Byron was not himself on Keppra.  Homework was a nightmare.  I would read one sentence to him and he would have no idea what I read.  And that boy had attitude!  It was basically a nightmare.

So now we are weening off Keppra and I am seeking a second opinion from the Level four Epilepsy center at Columbia.  We are going to see Dr. Akman who is the chair of the Epilepsy department on December 20th.  Please wish us luck.  We need to find something to control the spiking without causing a melt down in behavior.

In the middle of it all we had a huge project for Byron due at school on the Iroquois Indians.  In my opinion this project was too huge for a special ed student in 4th grade but there you have it - what to do?  In the midst of all this Keppra-tude we got it done.  Here is Byron reading his very first essay with a custom made Longhouse  - made by Byron and his dad.  Pretty Awesome!