Don't know what's gioing on with Doodles...

...but she's keeping us on our toes.

I took her to school this morning and let Mrs. Byrd know that we had increased her meds from 1.5 pills twice a day to two pills twice a day. I gave her the increased dose last night before bed. Then she got two pills this morning at about 6:45 am.

Well I got a call from the school at 9:00 saying Makily was acting different and was asleep. I thought the nurse was a little crazy because it didn't make much sense for her to be asleep but acting funny? I asked if she was breathing okay and she said yes and then asked me to come pick her up.

I got to the school at 9:30 and she was asleep in her chair. I didn't think anything was any different at first. Then the nurse held both Makily's eyelids open and she never flinched. She didn't pull away, her eyeballs never moved. The nurse shined a light in both eyes and Makily continued to just lay there. Her pupils were TINY but were slowly reacting to the light. She held her eyelids open for at least 20 seconds. Makily does not like ANYTHING on her head or face.......you can't even wipe her nose or change her bib without her getting agitated and kicked or whined at....even if she is asleep. So the fact that the nurse held her eyelids open and shined a light in there for that period of time with no reaction scared me. Her heart dipped down into the forties during this "episode".

I picked her up out of the chair and did everything I knew to wake her and she just laid there. I decided to stay at the school until she woke up. My fear was that she was about to have a seizure and I didn't want her to do it in the car while I was driving. Ten minutes later she sat up, opened her eyes wide, smiled at me then clapped her hands like nothing ever happened. She acted TOTALLY normal the rest of the day....happily, sweet and giggly.

VERY WEIRD.

She was in that state for nearly an hour. The nurse thinks it was a seizure. I immediately assumed it was from the medication increase. I called Neuro and spoke with the Nurse Practitioner. She blamed the med increase. I told her that the doctor told me yesterday that the increase would not cause any drowsiness or side effects which is why I was concerned. She told me that Makily's body had to adjust to the new dose and that she is going to be sleepy. I reiterated what the doctor told me the day before and she told me that if it made me more comfortable I could back off to 1.5 pills in the morning and two at night....then slowly wean her up from there. I again told her the doctor told me that Topomax will not cause those issues and she said to hold while she spoke with him.

sigh

She came back and told me that he does not think the increase in Topomax had anything to do with the episode this morning. That it does not cause drowsiness but that if I was more comfortable I could try the dosing the Nurse Practitioner had suggested.

So I kind of feel like they don't believe it was from the meds, they don't know what it was and so they are just offering me this solution.

I don't know what to think.

Tonight I gave her two pills and I will just do 1.5 in the morning and go from there. I kind of feel like they are leaving it up to Allen and I to decide what to do and I just don't know.

She's back on the apnea monitor again.

I'm too paranoid now.