Keto Bucket List

Tomorrow we got to the hospital for a 3 day admission to get Matt on the Ketogenic Diet, so this weekend has been Carb Fest 2012.  We wanted him to be able to have all of the stuff he loves before starting Keto because he might not get to have it again for a very long time if we can't find a low-carb, high-fat equivalent.

Friday we got him Mac and Cheese from Kentucky Fried Chicken, which is his absolute favorite thing ever.  One bite and the kiddo couldn't stop smiling, he was in total cheesy, carb-filled bliss.  Saturday we got him a cupcake, which he has never had before. He liked the initial bites of buttercream icing, but quickly lost interest. For dinner that night we got New York style cheese pizza, a food he just recently was allowed to start having. He was so excited, he was smiling and dancing in his high chair the entire time. This morning, he got to have pancakes for breakfast. Out of all the yummy stuff he got to eat this weekend, my mother-in-law topped it all today with her spaghetti and meatballs. I am praying that the dietitian can help us find an equivalent to that meal, because the kiddo could live off her spaghetti and meatballs.

If you had one weekend to eat anything you loved before starting a super restrictive diet for possibly 3-5 years, what would be on your bucket list? Why?

Introduction to the Ketogenic Diet

Last Thursday I met with the Pediatric Dietician who will be in charge of getting Matt acclimated to the Ketogenic diet. My head is still reeling....SO MUCH INFORMATION!!  Just for a little background the Ketogenic Diet is a high-fat, low-carb diet that is used to treat difficult to control epilepsy, mostly in kids.  The body goes into a kind of starvation mode due to the absence of carbs and sugars that are usually used to fuel the body. As a result the body starts to use the fats in the body for fuel instead. This was a primary form of treatment before anticonvulsant medications were developed. The diet is effective in controlling the seizures in half of the patients who try it. Matt is currently experiencing two kinds of seizures according to his most recent EEG--Salaam Spasms and Absence seizures. After a discussion with his neurologist about possible treatments with medications and a lot of online research we felt this was something we should pursue.

As soon as I started talking to the dietician, I felt more at ease. She gave me a packet of information to take home and started explaining the process we would go through to get Matt to the process of ketosis, where the levels of ketones in his body rises. Ketosis is supposed to reduce the frequency of seizures. I brought in a sample menu of things that Matt might eat in a typical day--scrambled eggs, farina, chicken nuggets, macaroni and cheese and Goldfish. I even had to make a list of his daily medications because they may contain carbs or sugars. She said that she would start looking for recipes that we could use that would still allow him to eat some of his favorite foods and look for replacements for those things we couldn't cook for him.

I don't think I fully realized how strict this diet was going to be until I sat down to talk to her. She stressed how important it was that Matt not eat or drink anything he wasn't supposed to and that we measure everything carefully. I also learned that Matt will no longer be able to take liquid medications because of their sugar content. Instead, he will be taking tablets or capsules and if possible injectable antibiotics so that ketosis doesn't get broken. If ketosis gets broken, say I don't measure part of his meals correctly, he has a very real possibility of having a seizure soon afterwards.

I have my shopping list of things to buy and some required reading before we're admitted to the hospital next week. I'm nervous, but optimistic that this diet will do amazing things in Matt's life.

Information Overload

Today was a big day for us. We saw our neurologist today because the kiddo had an abnormal 24 EEG last week and they wanted to discuss medication options with us. When we met with the doctors we learned that he is now has what is being called Mixed Seizures, meaning that he is having two different kinds of seizures. We knew about the Absence seizures because we have seen him have them. The second kind I had never heard of before. It's called Salaam seizure/spasm, and it looks like he sharply jerks his head down to his chest when he is having one.The doctor compared them to infantile spasms, but not as severe. After they told us what it was, he had two episodes we noticed today. They gave us two treatment options, one to give him an experimental drug that can cause blindness (he already has Cortical Visual Impairment) or giving him a different drug (don't know which yet) and starting him on a ketogenic diet. We decided to go with option # 2 for now and see how he does. He depends so much on his peripheral vision because of the Cortical Visual Impairment and the idea that he may lose it because of an experimental medication is unthinkable to us.


While we were there I brought up with his neurologist that his pediatrician mentioned the possibility that Matt might have Cerebral Palsy at our last well child check. With all his health issues, we have never been given a formal diagnosis that might explain everything that he has going on--seizures, microcephaly, genetic abnormalities on chromosomes 3 and 5, developmental delay, hypotonia, CVI and bilateral hearing loss. From everything I have read about CP, it sounded like some of Matt's issues could be classified as Cerebral Palsy. His neurologist agreed with me and added the formal diagnosis to Matt's medical records. As weird as it may sound, hearing the diagnosis was a relief to me. For the past two years, we have seen numerous specialists and therapists and it felt like all they did was heap all those other diagnoses on my little man without actually giving a name to all that he was experiencing. The CP diagnosis changes nothing about Matt. He is who he is and and his health issues do not define him.

So much information to process today, but I'm feeling confident that we made the right decisions at this time.