One MAD Journey
by Annette Siefert
When my son Casey was originally diagnosed with absence seizures at the age of 10, his neurologist said, “It’s really very common among 3-11 year olds, and easy to control with medication”. That was in May of 2009. By May of 2010, his two-second seizures had spiraled into 15-20 second seizures throughout each day and then in June 2010 he began having Tonic Clonic/Grand Mal seizures.
The medications took such a toll, our once uber-energetic boy was sleeping away most days. Once home from school, he would lie down and not wake again until his alarm went off the next morning. He could barely finish his school work, and homework was out of the question. He stopped playing hockey which he previously loved and played 3 days a week. He became very depressed and angry (who wouldn’t?) . He gained 13 lbs. in 6 months which added to his depression and inactivity.
Casey was on nine different medications before his neurologist suggested trying the Ketogenic Diet. At this point Casey was having so many seizures that we could not even plan a night out, so even after reading up on the restrictions he was ready to give the diet a try. We went to the doctor’s office expecting to learn in detail about the Ketogenic Diet, but instead Casey was offered an alternate diet, the Modified Atkins Diet (MAD). His doctor felt that at his age, and with his love of food there was a greater chance he would be successful on the MAD which is less restrictive than the Ketogenic Diet but boasts similar results.
On January 1st of this year, our family began the MAD journey. At first it was all consuming. If I wasn’t shopping I was cooking or cleaning dishes or charting Casey’s meals. But after only a week or two, and much to our amazement, the seizures came to an abrupt halt. I could hardly believe that after a year and a half of struggling with all the different drugs and their side effects a diet could do what none of them could. It seemed too good to be true and made all the extra work worth every bit of the effort.
This only lasted about a week or two, and then the seizures slowly crept back. But very slowly and only very short 1-2 second seizures. Our doctor had warned us that we must remain on the diet for three months before we could truly see if it was working or not, so we did. At the end of three months we had determined that Casey was still having a few seizures a day, but they remained short in duration and only in the morning just after waking. This was a much better result than any of the drugs he had used and it came with very few side effects.
Casey has now been on the diet for a full six months. He has lost most of the weight gained from the drugs. His energy level and sleeping habits are back to normal. He is playing hockey again. And, he just finished out his 6th Grade year with a 3.92 GPA and an Academic Excellence and Citizenship Award. (Last September when he started Middle School, we were not even sure he would be able to get through the year without home-schooling).
The diet has also become easier for me. I have learned where and when to shop. I cook and bake on the weekends and freeze food for convenient meals anytime. I have found many books websites with great low carb recipes and/or food products. My husband and I “bond” over making bacon and menu planning. It is a real family affair.
Casey continues to have a few small seizures in the mornings, and we are continually tweaking his menu with the goal of reaching seizure free status. But even if we never do, our lives are immensely better than before the MAD, and we are so grateful every day that we have our joyful little boy back.
P.S. When we began the diet there was not a lot of information out there or connections to other pre-teens on the diet. I was gathering so much information so fast that I needed a place to “put” it, and that place has become my blog. It has been very therapeutic for me and hopefully informative and helpful for others contemplating the MAD. So feel free to visit, get recipe and food ideas, find related links and journey through our struggles and triumphs while sharing your own. http://www.modifiedmom.wordpress.com