Last Thursday, Emily saw the nutritionist. These visits are usually uneventful - she weighs and measures her and we chat for a bit and that is that. Not this time!
She normally puts the scale on the kitchen table. Of course, Emily is too long to fit on it, so her legs usually hang off. Well this time, Emily freaked out. She looks like she is afraid to fall - her arms go up and she is grabbing at anything she can get her hands on. And the scream...well, it is a scream unlike any other. The only way I can think to describe it is: sheer terror. They tried moving the scale to the floor. Emily still freaked out, but they managed to get a weight that time. Then she had to lay on the floor to be measured and she was not happy about that. Finally, she had her head measured while Mike was starting to get her dressed again. She was still crying a little bit when Mike put her in bed. She continued to cry for a while so I went in there. Held her on my lap and played Gloworm for her. She eventually calmed down (after about an hour of crying) and went to bed.
The nutritionist was shocked at Emily's reaction, since she had never done that before. She wondered if Emily was just throwing a "2 year old fit". I don't think so. The scream is really what sends up a red flag for me. We have seen Emily whine and cry when she has to do something that she doesn't want to do, but this was NOTHING like that. She almost looked like she was having a panic attack. Honestly, we aren't really sure what is going on. The scream and the motion look like seizures, but we really can't be sure. She has had a few strange "episodes" lately - where we wonder "are these seizures?".
By the way, here are Emily's stats:
Weight - 28 lbs 9 oz (she lost an ounce this month)
Height - 36 1/2 inches (she did not grow at all)
On Friday, she went to OT and had another "episode". The OT does some exercises on this mini trampoline on the floor. Emily usually loves this because she LOVES bouncing, but on Friday she freaked out when she was put on the trampoline. Mike said it was very much like the incident with the nutritionist. It didn't take as long for her to calm down that time, though. As a matter of fact, for the last 10 minutes of the session, she was the calmest the OT had ever seen her.
Sunday morning, she was in the nursery during the church service and she had another "episode" when she was put on the changing pad. She got really scared and cried. They eventually had to put her on the floor to change her diaper and then use Gloworm to calm her down (Gloworm is wonderful!).
Emily goes for a 23 hour EEG tomorrow and we hope to get some answers. She will be in a strange environment, strange bed, and we are hoping that will bring about some of this behavior so we can get a better idea of what is going on. We go in at 12:30 and will stay overnight. She will be hooked up to an EEG the entire time, and there will also be video and audio. We can write down any odd things in a diary. And there is a button to push if we think she is having a seizure. The docs can then check that part of the report later to see what was going on in her brain at the time. We would appreciate your prayers during this test. I have a feeling it is going to be stressful for all of us, but I hope that it will give us some clear answers.
On a separate note, Emily had a rough night Sunday night. She tends to struggle with constipation every once in a while. We play a balancing act with Miralax and prune juice. She gets some prune juice with one feeding every day. And she gets Miralax every night. Usually she gets 2 tablespoons of the mixture, but we have occassionally given her 3 or 4 to help move things along when she gets really constipated. Well, Sunday night, she woke up 3 different times crying in pain. We tried "venting" her tube twice, but that didn't seem to make a difference. The third time she was up, she finally let out some gas and I think that was enough to settle her stomach. She slept the rest of the night and made up for lost time on Monday (diaper-wise). : )
One other thing I forgot to mention, we are in the process of weaning Emily off Depakote. That could be contributing to the odd behavior, but we will be happy once this drug is out of her system. That may mean we need to increase her Keppra more, but we will see what the docs say about that. I think that catches you up on all that has been going on with Emily these days. Never dull! We will let you know how the tests go as soon as we know.