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Don't lose hope

Thu, 02/25/2016 - 22:32
When my son Max was 4 months old he started having seizures. Hundreds every day. Infantile Spasms they were called. My husband and I were devastated! We had so many questions. We asked about his prognosis. His neurologist said "He may be able to count change one day". If you are a parent, I know you understand our fears and desperation. After many attempts to control his seizures with medicine with no success, we took him to Johns Hopkins Hospital in Baltimore Maryland, where we met with Dr. John Freeman (1/11/33 – 1/3/14). He started my son on the ketogenic diet at age 11 months. His seizures eventually stopped but he still didn't speak at over three years of age. I called Dr. Freeman and asked if he would ever speak He told me "He will talk". I asked him to write that down. One day, I was changing his diaper and tickling him. He signed “more”. I asked him if he could say “more”. He did!!! Since that day his vocabulary exceeds mine! Although he was also later diagnosed with Aspergers’s Syndrome, we are sooo proud and thankful to announce that today, he was accepted into the Masters’ Program at Northern Arizona University! I’d like to say that is was our parenting that made this happen, but in reality it was the ketogenic diet and my son’s perseverance. Max is compassionate (he raised more than $4,000 to send kids with autism to camp, took a girl with Down’s Syndrome to prom, and was a member of Best Buddies in high school), intelligent, and motivated. We are so proud of you Maxx and can’t wait to see you take over the world!


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Hi I was wondering if there

Submitted by Patrick Allen on Sun, 2020-01-12 - 12:59
Hi I was wondering if there is anyway you would be willing to chat with me over the phone about your situation. My 7 month old just started having these spasms last week. The neurologist is confident we have caught them early enough to nip whatever is going on in the bud. On top of that it seems like he is only having a minimal amount compared to some. But these are some pretty scary times for my family and I and I would really like to talk with others about their situations.

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