Sometimes a Mom's Gotta Do What A Mom's Gotta Do...Any Questions?
That 80's anti-drug fried egg comercial has been coming to mind lately...ugh...Desty's brain or my brain??...I'll leave that one alone!
Desty is officially OFF the Ketogenic Diet and OFF of a failed drug called Zonegran, titrating down a bit on Depakote, and is showing improvements as Stripentol and Clobazam begin to work together.
You probably have no idea what most of that means, nor should you. I hope you don't...
Destiny is doing much better - that's really all I care about. I pretty much went with my heart and (ulcered) gut to make most of these changes.
I have been losing my baby girl these past two months. Sometimes little by little, sometimes chunk by bloody chunk.
The Keto Diet gave us so much over the summer - I am forever grateful...
The Diet must be regularly tweaked and monitored very closely by a supportive and knowledgeable dietician. There truly was no support from ours. And when Destiny's condition spiraled downward, there was no support. She would not even be bothered to help me make Destiny's meals dairy-free or talk about how to ease her reflux.
I tried and tried to tell this dietician that eating meals triggered seizure clusters and tummy pain and reflux, but she insisted on communicating with me only at 3-month appointments, and then she would just look sadly and say "I don't know." I kid you not! She wouldn't tweak the ratio or advise me. I believe, with a real Keto team, the Diet would still benefit Destiny - as it did up until she got sick in September.
Originally, I wanted to do the Ketogenic Diet to get her off the meds. Now, at this point, being med-free is not realistic and all I really care about is giving her a little happiness, and bringing as much 'normalcy' into our little family as possible.
These past two weeks, Stripentol has given Destiny moments of extreme clarity and better seizure control. It's almost as if God is assuring me,
"Your Precious is still here, be patient, give these good meds time...this is a preview of what's to come."
So, on Thursday, Desty ditched/fell off/was gently pushed/leapt off the wagon and we all celebrated with lunch at Fridays (after she slept through her entire Keto appointment ;-) LOLOL!
I have the feeling Destiny's medications are working better without the ill-administrated diet. Seizures have improved a lot in the past week, but Destiny has been SEIZURE-FREE (at least noticeably!) for two nights in a row! Do you know how drastic that is?? Two weeks ago, 50+ seizures at night were the norm. Daytime: she still requires a nap in the morning, but any daytime seizures are very mild (the fact that I can consider any seizure of my child's 'mild' makes me want to cry...but it's true!)
She's engaging more and more; she is awake more. She is still regressed developmentally and behaviorally, but Desty's increasing moments of mental sharpness (peaking between 11PM and 1AM!!!) are priceless! And, of course, with sharpness comes natural Destiny sass! - it makes my heart sing!
Here's to Destiny Ann!
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