We met up with the neurologist for the results of the MRI and EEG.  He explained to us that there was nothing unexpected found on the MRI, that on a whole it was normal.  Unfortunately it is the under development of Jess's brain that is causing her epilepsy.  This will never worsen however can also never improve.  All that we are able to do is keep her seizures under control.  He also advised that he wouldn't go as far to say that Jess has Lennox Gastaut Syndrome however more generalised seizures.  He confirmed that Jess is a perfect case for the ketogenic diet and that he would like us to have a phone consult in a month once we are certain that Jess is completely over the viral infection and we will then adjust her medication a bit.  We are fully aware of Jess's delay but it still makes us very heart sore to hear the words spoken out loud.  Jess was finally discharged from hospital last week Sunday as she managed 24 hours without a fever.  We were so grateful to get out into the fresh air, and it allowed us some time to take in Cape Town before our return to Joburg on Wednesday night.  We are extremely happy to say that we are now on day 8 with no seizures whatsoever.  We are still adapting to the new diet as the portions are tiny and very fatty.  We are so blessed that we had the opportunity to do this trip and thank everyone for their support, prayers and kind words.
 


sally
03/20/2012 07:54

As you say it is heart breaking that Jess will never improve but I am sure that somewhere in that little head she knows how much you both love her although she can't tell you in the usual way. Varry on being strong for her our prayers are still with the 3 of you.

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07/16/2012 00:13

will return before long

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