I've been keeping something from you.
It's mainly because I was a little tired of complaining about the last six months. I was tired of the plans, the talking, the hemming and hawing. I wanted the "doing." I mean those who are close and in our day to day shuffle know so it's not like a secret or anything.
As of last weekend, Christian is no longer on the ketogenic diet. Over the last four weeks, we've slowly weaned back on to regular formula. Hopefully, soon, we'll be able to add some actual real live food to his diet. But now, baby steps.
The last six months have been very hard on Christian. The diet got off to a rocky start. It got better and then it got bad. Then better, then worse again. Christian had two upper respiratory infections where previously he had nothing but a sniffle. Christian lost three pounds, his coloring started to look off, and he was miserable. It became so that he was having more bad days than good. It became so that a good day was the exception not the rule.
That's never good.
He didn't move as much. He got really tight and couldn't relax. I went through every mental checklist I had and couldn't figure out what could be causing Christian so much discomfort.
One warm day a few months ago we were sitting outside of a gelato shop and all of us were getting down on our little cup of gelato, which was extra good because it was warm outside. Christian sat staring at us. I just had an inclination to give him some. The mini shovels used to scoop the gelato were perfect for tasting. So I gave him some. And his little mouth started fluttering. He also thought it was a good idea to get gelato that day.
That got us to thinking about this diet and what it was really doing for him. After all, salted caramel gelato isn't exactly keto friendly. Then I thought about his tasting and eating and how well he was doing with it before we had to take all the good stuff away. And then my stream of consciousness let me to thinking about Christian's experiences in life - what he'll be able to partake in. And I thought if he has limited abilities in life, is the ability to taste salted caramel gelato something I want him to miss out on?
This all seems really shallow, I know, especially considering that the keto diet is about seizure control. And seizure control trumps salted caramel gelato.It's a damn shame, but it does. But what if we weren't exactly getting seizure control?
It really wasn't about salted caramel gelato.
The whole point of the diet was to get some control over Christian's seizures. After Christian just seemed to be getting more and more unhappy, I started giving the diet serious thought. We messed around with ratios, we added special oil, we took it away, we did all we could to get some kind of change early on. And then recently, he wasn't moving as much, voluntarily or involuntarily. You don't appreciate involuntarily movement more than when there is no movement at all. He was tight, crooked, in pain.
I started that whole thinking thing again. I thought about whether things were better now with Christian than before we started the diet. And I couldn't remember. And if I couldn't remember, then it wasn't a significant enough change to keep him on such an unhealthy diet.
Don't get me wrong, the keto diet works wonders for some kids. And I believe in the beginning it had some affect on him. I'm so glad we tried it! If we hadn't, I'd have kicked myself and always wondered if we missed the boat. Now I know. We got on that boat and now it's time to get off. I knew it was an unhealthy diet going in. To tell you the truth, if wheat germ and coffee beans made my son's quality of life better, that's what he would get all day, every day! But it's just not the case, and it's not the case with the keto diet. It's costs versus benefits. And the costs were no longer worth it.
I can't say that I'm sad. I'm a little disappointed after all that build up and change over we didn't have better results. But I'm not sad about saying goodbye to that little scale, weighing, measuring, and mixing. And I'm not sad about saying goodbye to Christian's discomfort, constipation, irritability, weight loss, abdominal pain, and weakened immune system. And you know in this house, if something ain't workin' for Christian, we drop it like it's a bad habit. So the decision was made and we move forward.
The good news is that ever since transitioning Christian back to regular formula and bumping up his calories, he has started moving those arms again. He is sleeping through the night, he is content during the day (for the most part), he actually tolerates and may even enjoy his stander. Overall, he's just doing much better. His changed state of being is just confirmation that we made the right decision.
As a reward for making the right decision, we get a happier Christian and maybe some salted caramel gelato in our future.
Any excuse, right? ;-)
Christian and his girlfriend, Jada. He seems to light up everytime she's around him. And I love that she's loud and boisterous around him. She gets right in his face and isn't scared and I think he likes her high pitched Mini Mouse voice. When her mom told her to kiss him, she said, "Nooo! I can't kiss him...He's a boy!"
March for Science
6 hours ago