Monday, May 21, 2012

Thoughts on the Ketogenic Diet

So for the past two weeks we have been doing a not nearly as strict version of the keto diet.  Meaning, we've been only letting Ben eat the foods that he would be able to eat on the diet but we haven't been weighing them and giving him as small of portions as he would if we were doing the real thing.  
Our intent was to see if he would be able to handle eating just those foods for an extended period of time.
My understanding was that it wouldn't affect his seizures since he wouldn't be going into ketosis because he would be eating too much to have that happen...follow me?

playing with his cookie set

Ben surprised me and ate much more of the food than I expected.  There were only a few times where he absolutely refused to drink his cream.  I found out that he loves hot dogs but is not a fan of bacon.
We did have many hard moments that ended in a multitude of tears.
We ended up eating on the couch or in his bedroom a lot so he wouldn't see what everyone else was eating...especially when we got pizza last week.
Towards the end of the second week I noticed he had stopped asking for "fish" (crackers).
It was so hard to tell him no every time he asked.  

Singing with Elmo

Yesterday in church we sat in front of a family with little children.  Ben turned around and looked over the pew at one point and saw a little bowl of cheerios.  Oh boy did he get excited!  The mom knew Ben was on a special diet and felt so bad that she couldn't give him any.  Ben started screaming and so we took him out.
Then there's the sacrament...Ben really looks forward to the bread and water during Sacrament meeting.
At first I thought I could just distract him when it went by but he caught a glimpse.  I went ahead and passed it on down thinking he might not mind that much but that was not the case.  I had to have them hurry and pass back down a piece of bread to appease him.
Then in nursery he has to leave the room while the rest of the kids have their snacks.  I pack a sippy cup with water in it for him to drink as he roams the halls with a nursery worker during that time.
It breaks my heart.

Riding the "neigh" at Great Grandma O.'s house

Anyway, yesterday marked the end of the two weeks.  I was anxious yet hesitant to call the dietitian and tell her how things went.  I kind of thought I knew what she would say...but I didn't want to hear it.  She was very encouraged when I told her how he had done and feels that he would be a good candidate to have success on the diet.
Yup...I thought so.
I was hoping that the fact that he hadn't always finished the full amount of cream would be enough to discourage her but she didn't seem to worried and talked about ways we could either hide the cream in other things or adjust the ratio of the other parts of the diet to compensate.

"How were his seizures?" she asked.
Okay, so he typically has 2-3 tonic clonics a week and about the same of his staring/turning blue seizures.
During the two weeks of the trial he only had one tonic clonic and no staring seizures.
His myoclonics (the quick jerks) did not seem to decrease at all.
I asked her if it was possible to have seen a change in his seizures even though we weren't really doing the diet.  She said "of course"...he was probably in mild ketosis during those two weeks.
I hadn't understood that and thought that ketosis was something you arrive at after a period of time not something that has different levels you can achieve.
So...if he did that well while only slightly mimicking the diet, how well would he do if we went ahead and hospitalized him and really went for it?
I should probably be really excited at this realization but I'm ashamed to admit I'm not jumping up and down.  
This is hard...really hard...emotionally, physically and it effects the whole family...not just Ben.

I asked her a couple of questions that I had while reading the book that is required before initiating the diet.
It talked about the breath of the child changing scent.  The book described it as a sweet smell.
I noticed, even when we did the two day trial several weeks ago that he had what I call "sick breath".
A feverish breath.  It happened again during these two weeks.  Sometimes it is really strong.
The dietitian said that yes, she has heard it described similarly...sick as opposed to sweet.
I know it sounds really silly but I used to enjoy when Ben was close to me and he would breath in my face.  I always thought he had a precious little smell to his breath.  I don't want him to lose his sweet baby breath.
The other question was about Ben's understanding of this diet.
The book stated several times that many kids on the diet are so strong and will refuse tempting foods that are offered to them because they don't want to have the seizures.  Well what about the kids that don't understand that?  How do you explain to your two year old that doesn't really have the understanding of a two year old that he can't eat what everyone else eats because it's bad for him?
I asked the dietitian if she had any ideas of how we could help him comprehend this.
She suggested to talk to him about it a lot...even if we think he's not understanding.
She also said to start using a sign for "seizure" and try and associate it with the foods that he can't have.
Hmmmmm...okay.  An interesting thought.  I wonder if there's a way that he could understand a sign for something that's intangible.  I guess he knows the sign for "hurt" and uses it appropriately.  He uses "thank you" and "more"...maybe we could help him get it.  I just don't know if he recognizes what is happening to him when he seizes.  Does he even remember his seizures?  It will be interesting to try.

Anyway, after I got off the phone with Eliza I cried.  I cried and prayed that I would have help to know what to do and to be able to do it.  I prayed that Ben would be able to handle this if we decide to do it.  I prayed for strength.
I've been crying an awful lot lately (I still don't think this new med has kicked in...maybe it's just not going to work for me).  My poor Benji has been seeing me cry too much.  Bless his heart...each time he recognizes that I'm crying he immediately puts his arms out to me to give me a hug and then he looks closely at my face and wipes away my tears with his fingertip.  It's precious.  
Sometimes we cry together and we hold each other.

Since Ben was napping this time I wiped away my own tears and went and rested on my bed for the remainder of "quiet time".  I knew that I wouldn't be able to fall asleep so I picked up a book that I'm totally engrossed in.  Nie Nie's book...Heaven is Here.
I was just at the part where the plane crashes and so I cried through that whole chapter.
And of course my thoughts then turned to how things could be much worse for my little Ben and I shouldn't feel sorry for myself.  The words from another inspiring blog that I follow (The Sullengers) came to my mind... "I can do hard things".  I should probably have that put on a plaque to place in my house if we end up doing this diet.
I just wish that I could help my little guy understand that he can do hard things too...and that there is a purpose behind this particular hard thing.

Love that guy!


  1. Okay, so this made me cry. I was going to call this morning to see what the dietician said. Now I know. I will be praying for you to be able to make the best decision for you and Ben, and to have the strength for whatever "hard things" are involved.
    Love all the photos in this post of that precious little guy!

  2. I know that this is SO hard. You have to do what is best for you, your family and Ben. If that means no keto, that is okay. I literally describe the first three months of keto as "hellish". However, we had spectacular results. Cole's drop seizures completely disappeared and have stayed away for 2 years. I am so glad that we did it. Even if it led to the g-tube, which also was a hard thing that is a major blessing now. Good luck, A! I am really impressed by the results of the trial. Usually you don't see major changes like that until the full diet. You might not ever see a real decrease in myo's. If you need to talk, call me. HUGS and prayers.

  3. It is okay to occasionally "feel sorry for yourself".Let me know if there is anything I can do for you.