Oliver has been on the Ketogenic diet for a full month now. We've seen about the same amount of seizures (more in fact) as last month, but a few of them have stopped on their own without medical intervention so hopefully that's a step in the right direction. He had a bad one yesterday but seems to be feeling great today. His blood was drawn today and if all the blood work looks ok that will mean he's tolerating the diet fairly well and we can increase the ratio to 3.5:1. They hope with this increase we will see more consistently high / large ketones and better seizure control. Crossing our fingers that they are right!
I had a bit of a breakdown at the doctor's office today. They handed me some packets of information to fill out prior to our meeting with the Keto team. In it was a questionnaire for development level of children 12 months of age. I hate these things. I can't answer yes to any of the questions. I couldn't even answer yes to the questions on the 6 month questionnaire. Not only are they asking me "can your child throw a ball" , "does your child look when you point at something", "does your child try to gain your attention to show you stuff" , "is your child walking independently or does he/she still need to hold onto your hand when walking?".....but as I'm answering these questions with tears running down my face...there are two little boys just about the same age as Oliver....walking around right in front of me. Stopping to bend down and pick stuff up (another question on the questionnaire), smiling at their parents (again, I have to answer no to this question), and grabbing toys (nope, can't do that either). It just seemed like exceptionally bad timing or a very cruel cosmic coincidence. It's not their fault they are normally developing and I shouldn't be so sensitive but it just seemed like a sick joke.
By the time they call me back to meet up with Jason and Oliver (who had gone back to do vitals while I did paperwork), I'm emotionally a bit of a wreck. I feel bad for the nurse who asked "how are you doing today?!" Normally i just smile and say "fine!". Today I told her the truth. Sorry lady, but you asked. "I'm awful".
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Hugs to you! Developmental questions are the worst! It doesn't matter what type of mood I am in, those questions make my heart hurt. I'm sure you're like me and spend a lot of time focusing on what Oliver CAN do. Thinking about the things Patrick can't do is the complete opposite of what I do everyday to survive.
ReplyDeleteBethany....I usually go to all Julia's Dr.'s appts. with Laurie just to help out...for awhile those questionaires also got the best of us but Laurie finally reached a point in the past year where she gave up reading them..."Does child help make their bed??" Really??!!! and now Laur thoroughly enjoys herself as she puts a giant X on the pages and turns them in that way.... after almost 3 1/2 years the Ped. and staff know Jules and it's fine with them. There must be some kind of cleansing in marking all over the pages..like a kid getting to scribble :) Totally understand your response to the questions...you have sympathetic ears and hearts out here in Colorado! Hugs and prayers for the Keto to do the trick. Lisa...Mimi to Jules
ReplyDeleteI'm an adult on keto (MAD at a 2.5:1 ratio), and I got my first clean EEG since 1980 in August after being on MAD for a year. Good luck getting going - every time I think about having a piece of chocolate or cake, I look at my framed letter from the neuro and remember why I'm doing this. :)
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