Chalice's health and vitamin D

It has been awhile since I have posted. It has been busy balancing Chalice and my job search. Chalice now has the option of having a higher calorie snack which is good when she is really hungry or doesn't eat much of one of her meals. She has not been sleeping well at all which has been causing some minor seizures, but usually never more than 2 or 3 a day and they probably wouldn't be noticeable to others who didn't know what they were looking for. We can't figure out why she isn't sleeping well or very long but we plan to ask the dietician/neurologist about possibly getting some type of sleeping medication to help her. We will be going to Mayo to see them in July.

Chalice has gained significant weight since February. She was barely 30 pounds then and she is topping 35 pounds now. She looks plump for the first time since she started having seizures. It is nice to know she has a little fat to spare now as it was always so scary when she would get sick and not eat and then lose weight that she couldn't afford to lose.

I have been reading a lot about the lack of vitamin D and the connection to just about every disease and condition out there. I have been taking significantly more (found the gummy vitamins which helps). I take 1400 IU of vitamin D every day and I have noticed significant improvement with my pain and energy levels. I have also been able to lose some weight (which I found out online that vitamin D is a natural weight loss vitamin because it helps with your metabolism). I want to ask the dietician/neurologist about adding more into Chalice's diet and possibly a higher amount as it has been shown to significantly reduce seizures. For all those skeptical of the vitamin D connection, just do a google search about vitamin D (by itself or with another condition - i.e. vitamin D and epilepsy).

I will try to write more frequently to keep everyone up to date on Chalice.

description of the ketogenic diet and sample food menus

I have been asked what can't Chalice eat? I always tell people that list of things she can eat is shorter although that is not completely true either. From my experience with the ketogenic diet, here is the best way to describe the diet. High fats and protein and little to no carbs and no sugar (except for whatever is in fruit). Only water to drink with meals. The main staples of the diet are: heavy whipping cream, butter, mayonnaise, macadamia nuts, and canola or olive oil. All of the fats are the base of the diet and the most important thing for Chalice to eat. When she is not eating well we often times just have her drink whipping cream or eat spoonfuls of mayonnaise or butter just so she gets the fats.

Every meal is a "menu" that is weighed out by grams and given to us by a trained dietician. All menus are based on the fat ratio and by calculated by calories. Chalice is currently on a 1300 calories a day diet with a 2.75:1 ratio. For perspective, the highest ratio is 4:1 and goes in quarter steps down. The ratio is only adjusted when Chalice's ketone level is not high enough. We monitor her ketone level with ketosticks every day. It rarely dips below high (which is where it is supposed to be). We are supposed to stick with the same brand of foods every time as well which can make things challenging when we travel. Chalice also takes a multi-vitamin and a calcium supplement every day. With this explanation, here is a sample menu of what Chalice would eat for a meal and a snack:

Meal menu:
13 g fruit
7 g goldfish crackers
22 g turkey breast
24 g black olives
20 g butter
24 g mayonnaise

Snack menu:
6 g fruit
10 g pepperoni
7 g macadamia nuts

sickness, stuffiness, and growing

I don't know why Chalice goes through these vicious cycles of sickness, stuffiness (which I think might be allergies), and then a growth spurt. During these times, it is extremely difficult to deal with Chalice. She is emotional, aggressive, and goes between extreme energy and fatigue. It is also difficult to feed her. Tough love has come in handy with these situations but it makes me question if we are using it for the right reasons. I have often thought that if Chalice ever goes off the ketogenic diet that she is going to have a lot of emotional issues and problems eating in general. Food and emotions are tied together. If you try an elimination diet (eliminating any products containing wheat/gluten, corn, yeast, meat, dairy, or citrius) for a week you will see what I mean.

So, I have been thinking that we should probably take Chalice in to get tested for allergies. I have been hesitant because if she is allergic to any foods it would make the ketogenic diet more difficult. I will have to think more on this.

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.