Here is how our journey began.......One Summer Sunday morning in June, Evan was eating is daily "breakfast of champs," cereal. He did an odd hand jerking, and spilled his food. Leon (my husband) & I both saw it and asked him to slow down. Seconds later when he went to take a drink of milk he again did a repetitious jerking and spilled on his shoulder???? We talked quietly about it on the way to church and Leon told me NOT to rush to call the doctor.
A whole week later the motions began again at breakfast. I decided as soon as he went to play, I would call Leon and then maybe the pediatrician. But as he ran off to play he fell, and his legs were jerking....panic mood set in as I yelled his name and asked if he was ok? He said he's "too wiggly!" We got an appt. at the Pediatrician in an hour, as we arrived his symptoms worsened. He fell over several times and they took us right back. After careful review, the pediatrician called a neurologist in Lancaster (I remember thinking why call him, there's nothing wrong with his brain, it's his muscles)!!!! The neurologist said due to his age and current state, Evan needed to be seen immediately by a children's hospital! I was fighting back tears as our pediatrician assured us it was going to be ok and she'd be thinking of us.
Next we rushed home, met Daddy who had got off work and off to Hershey Children's Hospital. I was crying and Evan asked why? He said "are you crying because I'm wiggly"? When we got there, Hershey was ready w/ a room and a team of Doctors. All of a sudden Evan was fine! They ran test after test, blood work, MRI & Spinal Tap (under anesthesia), and everything came back fine. We were to be released the next morning and the neurologist, (Dr. Rivera) decided to run one more test. A 15-30 min EEG right in his room. She said she was so surprised what they found, Evan was having seizures. We left the hospital on our first med Trileptal, and figured our journey was almost over, we would just have a child on meds 2 years max.
That week Evan's seizure activity got worse every day, first 3 "wiggles," then 5, then as many as 9! We called his neurologist and he was immediately switched to "Keppra." Then the "honeymoon" began and Evan went seizure free for over 2 months! Again we thought we had it figured out and our journey was almost over. By fall we were seeing little jerks and something new "head drops." Meanwhile at my market job, 1 day a week, I met a family who's daughter had something similar to Evan and they were treating her epilepsy with Diet Therapy/Keto Diet. I had heard of this when I was a teenager, through a movie called "First Due No Harm." I wanted to talk to Evan's neurologist, but didn't want her to label me as "crazy or health nut." When we followed up with an appointment, I was praying for 2 things....that she would see Evan literally have a seizure (just to reassure me that, that was indeed what they were) and that I could bring up the Keto Diet and see if she ever heard of it? Both prayers were answered, in fact when I began to show concern for increasing Evan's meds, SHE brought up the option of Diet Therapy! Woohoo, doors began to open!
When Evan's meds were increased every week for a month, but he continued having seizures, Leon and I began to talk very seriously about the diet with each other and friends and family. We knew we would need support for something so difficult. By November we spoke to a dietician and began the first step of changing Evan's diet. NO SWEETS (juice, soda, candy, cookies, cakes, packaged snacks high in sugar, etc...) He accepted it very well and understood his body was not healthy.
Also around the same time we met with his preschool teacher and found out what he knew back in September (writing name, counting, letter recognition) he had now lost and was not retaining information. It was so difficult to see him go backwards with cognitive learning skills. He would try to count and couldn't even get to number 4 (his age). He also began to show increased aggression at school and at home. He was hitting, biting, yelling and most times had a grumpy, miserable face, where his smiles used to be. It was hard to be patient, but I knew we were battling more then a bad mood, we battling with "Keppra" (his meds)!
Before Christmas we had decided we are doing the Ketogenics Diet, but Evan was 20 days seizure free??? When we met the diet team the first week of January 2014, we all decided the best fit for us/Evan was a modified version of the diet called MAD.
We began Monday, February 3 2014. I stayed home all week and created food I thought Evan would like. I want him to feel "normal." I guess this is our new normal.
Hershey Children's Hospital (June 2013)
FIRST DAY OF PRE-K (Sept 2013)
24 HOUR EEG @ HOME (Nov 2013)
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