If I could pick one phrase to describe today, it would probably be "face palm". The sad part is that so many things went right today! But, as my dad always says, "I can only be as happy as my most unhappy daughter"--or, as in my case, son. Well, the video (just for you Elizabeth!) can speak for itself, or you can read the good, the bad and the troubleshooting below.
THE GOOD
- Bertrand had much better fluid intake today!
- I found the CARBmaster yogurt for him at a grocery store!
- Bertrand did two 1 hour stander sessions for 2 hours total! A first!
- In the stander he was in proper position, resting on his forearms!
- Bertrand was in a very sweet, happy mood all day. :)
- People remarked at how well he was tracking!
- And, he looked, smiled and interacted with them for the first time!
- He had his first drop (atonic seizure) in over a week.
- He had at least 12 startles (myoclonic seizures)--3X more than yesterday.
- He still didn't completely fulfill his fluid requirement.
- While this could've just been a bad day, I doubt it.
- We added TWO new things today: Vitamin D and grape Powerade Zero.
- His seizures started after the D-laced breakfast, well before the Powerade.
- But, to be on the safe side, we'll be removing both tomorrow.
- If that helps, then I'll try slowly adding back the Vitamin D first.
- But, if that doesn't help, we'll remove the carnatine supplement again.
- We'll work from there.
What kind of Vitamin D are you using? When I was looking for some for Halia, I found one that is just Vit D in oil, with each drop containing the full dose needed for a baby. This worked so much better than the 1.0 mL of the sugary stuff she was supposed to take! I haven't contacted the company to double-check that it really just is the vitamin and oil and no carbs, but it's an idea... I think the one I bought was called "Sun Drops" or some such thing...
ReplyDeleteThanks, Fawn! In hindsight we believe (and this may sound crazy) that Bertrand's constipation may have been contributing to his seizures! Now that he is more regular he is back to improving again. :)
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