Now that we got to experience a week of almost no seizures, it Pisses me off that they're back. It used to make me sad, confused, anxious and helpless when he would have the seizures. But now that I've experienced the Doodle seizure free, even though it was only a week, and now that they are back, now I'm freaking Pissed. What is so frustrating is that I have no idea why they're back. Or should I say, why they decided to leave for just that one week? What was the trigger? What did we do differently last Friday to bring them back. Was it something he ate? Was it the heat? Did his body get used to the medicine already? Was he getting sick? Was it a full moon?
Then I thought I cracked the case!!!
Not to get completely disgusting and graphic on here but I noticed something very interesting yesterday. I was changing a Doodle Poo and it was very soft...the glycerin suppository they gave him in the hospital on Saturday finally did the trick.
Well, are you on the edge of your seats right now?
So I change his pants and in the Doodle Poo are hundreds of white sprinkles. His Depakote medication comes in sprinkle capsules--filled with tiny white granules. The tiny little beads of medicine were not dissolved which means that his body had not absorbed the medicine. I only noticed because of the soft poo. He's been so constipated over the last couple of weeks that I haven't noticed whether or not the little Depakote granules were in there...there has to be a connection somehow about this and the seizures coming back so strongly.
I talked to the very nice UCSF Doctor and he said he's probably still getting the medicine, just not all of it and that the poo thing probably had nothing to do with the bombardment of seizures. I'm not sure how if I'm looking at them the same way they went in...then the Nurse Practitioner told me if he has any kind of immediate poo or diarrhea after eating or taking the medicine, it is not getting absorbed.
Hmmmmmmmmmmmmm. We have a Doodle Poo mystery on our hands.
You can tell the Doodle is feeling better today because he is back to doing raspberries. He's done a few today, not the usual 872 per day we've been used to getting, but it's a good start. He's more alert and his eyes are better focussed. He didn't have a grand mal today but had around 10 of the head drop type of seizures so he's still a little wobbly. The carts have been hidden from him so as to not torture him by wanting them. He's pretty bored and wants to run around. He escaped out of the carpeted room a couple of times today and boy can he run fast. Now when he runs away from me he thinks it's really funny.
We're really loving the Doodle's new nurse. Jimmy has a little bit of a crush on her. She takes really good care of the Doodle and he's genuinely excited to see her every morning. She's going on vacation for 3 weeks so we will have 3 different nurses coming in to take her shifts. Ugh. It's hard having strangers in your house and trusting them with your most precious things, like your children. It takes me time to warm up to new people and feel comfortable with them. It's a lot of energy of which I'm not in abundance of lately.