INFANTILE SPASMS and SURGERY

Alex's story is one of hope.  On April 17, 1998, at 4 1/2 months he was diagnosed with Infantile Spasms, a form of Epilepsy.  Up until then, he was a normal, healthy, baby boy. 

After experimenting with several meds and combination of meds including 
ACTH injections, we were told that Alex had intractible seizures (seizures that are not controlled with medications).  

Several tests suggested that the seizures were originating from a particular area of the brain. This made him a surgical candidate. In March of 1999 he had 70% of the left hemisphere of his brain removed in 
Detroit.

Immediately following surgery he had a twinkle in his eye. The change was miraculous. Nineteen months later Alex walked and started communicating with us. 
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Alex made some gains after surgery, but continued to have seizures. He had a good 2-3 years with mild seizures, but they slowly began to increase in frequency and severity. We tried countless medicines, the ketogenic diet, biofeedback, and homeopathic remedies. Alex was having too many seizures and was losing skills. His quality of life was not good and we were were forced to re-visit the idea of surgery.

In February 2005, we went back to Detroit for a second time......Long story short... Alex is doing well. He's not seizure-free, but the seizures are much more controlled. He rides a regular bicycle, runs, climbs, talks, and is a very happy boy! We are working on reading and writing which he still can't do, but he does recognize some words. Alex is now 13 years old.

One thing we've learned it to never give up hope. When he was an infant, we were told he might not ever walk or talk....... he does both and more!


    
              -Emma (Alex's mom) 
          updated: Januar
y  2011
          thecats5@yahoo.com



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