Daycares and ignorance

So we went to check out a new daycare today for Chalice when I someday have a job and we can afford to have her in daycare again. I am again surprised how ignorant people are about epilepsy, seizures, and the ketogenic diet. I am not sure why I seem to be the only one that thinks it is ridiculous that food allergies are more important than a diet that prevents seizures. I understand that food allergies are serious and that kids who are allergic to certain foods should not be exposed. The big however is that I don't think parents of kids with food allergies understand that the ketogenic diet is just as important and that it is way more restrictive than a kid who is allergic to a couple of foods. The ignorance on this is beyond words as it is SO frustrating that the daycares will go so far as to ban these allergy foods from the building. Totally illegal is what I think about that. It feels like major discrimination for a child who needs those foods to control seizures. I am almost 100% sure that a public school cannot ban certain foods from the premisis as it would have to be a state or federal law for that to occur. Why are daycares above the law to not allow equality or at least allow for exceptions?

The funniest thing is that I haven't talked to one adult who thinks I am way off on this argument. Anyone who took the time to understand the ketogenic diet and understand the commitment involved would never in a million years think that restricting foods for allergy reasons is a reasonable thing to do.

We liked the daycare and Chalice seemed to like it too so we will see. I am just not happy that I have to abide by some made up rules and that no one seems to think the ketogenic diet is important enough to make an exception. The food we make is only for Chalice so why should it affect other kids?

Background on Chalice's seizures

So, we spend more time preparing and feeding Chalice than anything else in our lives. We have estimated that we spend close to 9 hours a day on these activities. There are many times we have thought about pitching the whole thing because it is so time consuming and very draining trying to get her to eat. We really would just give it up if it weren't for the benefits. Chalice is basically seizure free with the diet and her one medication Clonazepam (sp?). She does ocassionally have a small stare or head drop but nothing like before being on the ketogenic diet. She usually only has seizures now if she is sick (cold, flu, etc.) or if she just refused to eat very well for a few days.

So the background on Chalice is that she has epilepsy (don't ask me what type because we never got a clear diagnosis). She basically has general seizures with random staring and head drops (which sometimes ends up in falling right on her face). If you are familiar with any of this, you know how terrible it is when your child continually has seizures and is falling on their face and has scratches and gauges all over. Originally when Chalice was diagnosed with epilepsy she was put on the medication Topamax (terrible medication). She experienced extreme learning and development delays while on this medication. We took her off of Topamax without "doctor ok" after she started taking Clonazepam. We are actually on neurologist number 3 now and we finally found someone who listens to us and will take the less risky path when it comes to Chalice's health. I could write a whole blog on doctors and I probably will at some point.

Chalice year 3 of the ketogenic diet

So, I am only just starting this blog now but the longer my daughter is on the ketogenic diet the more important I think it is to share with others our experiences. Will share more soon.