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the adventures of a MAD mom

modifiedmom, modified mom, modified atkins diet for seizures, seizures, epilepsy, ketogenic diet

Well, it’s that time again when the days get a little shorter and cool off enough that you know school is right around the corner.  Some love this time, when their kids are back on a schedule, gone for a good part of the day, and occupied with homework all night.  I, however, look at the end of summer with a certain sadness.  There is always the guilt, that I worked to much and played with the boys too little while they had so much free time.  But mostly, I lament the loss of the the long flowing days where we can share a leisurely dinner, take walks in the evening, watch a movie or swim into the nightime if we feel like it.  I can’t help but think that school hours were created by someone without kids.  How else would kids have to be up, fed, dressed and sitting in their seats each morning at a time when their body is usually just beginning to wake?

These early mornings, up before nature intended, seem to trigger Casey’s seizures. The summer time is a time when he can sleep in, waking to his own internal clock and therefore staving off seizures. Granted, he has far less of these now that he is 8 months into the Modified Atkins Diet, but when wakened before he is ready, the seizures are more frequent to be sure.

Another reason I don’t look forward to back to school is filling out all the forms that neurotypical kids must, but in addition writing letters and emails to the school about Casey’s epilepsy.  I always try to send something to each of his teachers including a description of what epilepsy is, how it effects Casey and what to do in case of a seizure. Making my life easier, the Epilepsy Foundation provides these pre-printed forms to save time, which I really appreciate.  They will come to your school to train the staff on epilepsy safety, which is an amazing service they provide for absolutely free (so keep those donations to your local chapter rolling!).  Our UCLA MAD team has also provided us with forms that discuss the Modified Atkins Diet for Seizures, and how the school and emergency services should deal with Casey in the case of emergency while on the MAD.  There are now even emergency bracelets with a USB drive in which you can load all your medications and information into.  An EMT simply removes the drive and can instantly read the information in case of emergency.

With all this in place, I still worry about Casey leaving for school each morning, but it sure gives me a little piece of mind verses leaving it all to chance.  It doesn’t, however, do anything for my end-of-the-summer blues.

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