One Day at a Time

Interesting morning.  

As we met with the dietician I kept thinking how different Chris's perspective is from mine.  In his mind, he's up every day ready to go to work by 11:00 and eats breakfast, lunch and dinner.  The reality I see is he can rarely get out of bed before at least noon, sometimes makes it to work by about 3:00 and doesn't eat at all until he's starving late in the day. 

Having a 22 year old young man who needs to comply with a special diet won't be easy, especially when he thinks he already is.  Getting nervous about this process, and hoping that once he reaches ketosis and feels better, he will also sleep better and will get on a more normal schedule.  Of course, as the mom, I'm nothing but a nag when I correct him and remind him of his real habits - the ones I actually witness.  Getting this one healthy so he can leave the nest will be a challenge.

Through tears, I told him I will FIGHT for him and do my best, but he needs to be realistic and also do his best to comply with this difficult diet.  It will be worth it, I tell myself.  It will all be worth it.

In the meantime, we will do the best we can.  This month is all about learning the ins and outs of the Modified Atkins Diet and what Chris can and cannot eat.  Now I'm grateful we are not trying to do the 4:1 ratio in the traditional ketogenic diet.  This is going to be hard enough.  Getting a 2:1 ratio of fats to protein involves an army of calculations on my part - and determination on his part to feed his brain properly.

I bought Ketostix and Chris peed on the stick for the first time today.  It looks like he's between 15 - 40 on the scale.  We've got a ways to go to reach ketosis.

I keep reminding myself: one day at a time.

The Ketogenic Diet: Is it just Our NEXT Best Last Hope, or a CURE?

I should be further along in researching the Ketogenic Diet by now.  I’ve had the book, Ketogenic Diets, for a month. I am slowly, so slowly making my way through the book, taking careful notes. Now I have a second book about the Atkins diet and a cookbook to pore over.

So, why do I drag my feet when something so important  - no, not just important - life altering, is at stake?  After much soul searching, I’m convinced it’s because something so important is at stake that I do this.

I’m convinced the Ketogenic Diet is our last best hope for Chris being at least close to seizure free.  It doesn’t matter that there have been several last best hopes so far:  medication changes (so far, nothing has given the relief we’d hoped for), video EEG in the hospital for a week (seizure focus wasn’t located), surgically implanted electrodes in his brain with another week of video EEG in the hospital (still nothing definitive - seizures propagate so fast it’s impossible to see where they begin - and then he had that brain bleed to recover from…), MRI with dye to show fluid flow to the brain (there is no blockage), Ictal SPECT (finally located general area  of seizure focus but it is inoperable).  And so it goes.

Of course, if the Keto Diet doesn’t work, there will be more last best hopes.  We still haven’t tried the VNS.

But THIS.  THIS is our last best hope for now.  It’s a non-invasive, natural remedy that has actually cured children and adults of their epilepsy.  Yes, I said it: cured.  They go off meds, and later off the diet and have no more seizures.

And I am afraid.

Afraid that what has happened with all the other last best hopes will happen again.  That my dream of Chris living a life free of seizures and the side effects from medication is just a pipe dream.  

But I will plow through and I will buy the right food and come up with recipes and find a way to help a 22 year old business owner live daily life while on a restrictive diet to control his seizures.  I will do it, because that’s what we warrior moms do.  Our desire for our kids to live a normal life into adulthood trumps the uncertainties.  The fear will still be there.  But fear is to be kicked in the teeth and pushed aside for the mission at hand.  We will do this diet and we will watch to see the results.  Waiting and hoping for the best outcome.

And if the results are not what our hopes and dreams had envisioned, we will try the next last best hope.  And the next.