Megan's story

Hi! 

I am Terri from Tampa, FL.  I have 3 kids.  Two boys, 13 and 7 and my little girl Megan who is turning 3 in October.  Megan was born full term w/no complications.  At about 2 months I knew something was wrong and suspected seizures.  At about 8 months they were finally diagnosed as complex partial and since then she has experienced every kind and more recently after her 2nd birthday developed infantile spasms. 

Megan is severely/profoundly hearing impaired bi-laterally, cortically visually impaired, has GTube and encephelopathy - neuromuscular disease that has not allowed her to reach any developmental milestones and  is under the umbrella of mitochondrial diseases, but which one exactly no-one can figure out.  All of her genetics have been normal!!  Her spasms were treated with ACTH that nearly killed her from the immune system suppression. She got viral pneumonia, wound up intubated then got RSV while intubated and every other virus that was in the PICU over our 8 week stay. 

She got a trach on April 1, 2009 and we brought her home ventilator dependent.  The ACTH did stop the spasms, for a little while.  Earlier this month I thought I saw one, so did my husband.  Right now we are in the middle of a 72 hour EEG that finishes tomorrow.  Keppra, Topomax and Clonopan are not doing it.  I can NEVER use ACTH again on her and am petrified of where this is heading. 

Reading on the Keto diet.  No way can I give up this fight to overcome these seizures and give her some happiness.  I got a very short glimpse of my baby without seizures for about a month and it was the only time I have ever seen her smile so much and not cry all the time. She does not even want me to cuddle her right now.  Breaking my heart.