Tuesday, December 11, 2012

E to the E to the GEEE!

This weekend Simon had another EEG. It was our second one, though the last one was just a few months ago. Because of the results of that first EEG and the subsequent diagnosis of ESES; frequent, repeated EEGs and other fun tests (like MRIs, blood draws, and neuropsych evaluations) have become a regular part of our "new normal."

Simon wasn't at all happy about having his head filled with glue, tape, probes and wires but he tolerated it SO much better this time around. There were some significant things we did to prepare that I think helped.

1. We obtained a few of the leads in advance and using tiny hair clips we played with them and practiced wearing them for the past 2 weeks. Using them in this way took some of the "scary" out. We also visited the room the study is held in and just hung out for a little while under non-threatening circumstances. I think knowing where we were going and what was being used helped Simon feel more comfortable.

2. We started talking about the EEG days before it happened and I got Simon to help me prepare for it. The day of, we discussed the "Doctor Sleepover" and Simon helped pack his lovies and chose his PJ's and snacks.

3. We added in some fun distractions and rewards to focus on when the going got tough. I bought several tiny toys from the dollar bin to pull out when he got too stressed. I loaded his iPad with a few fun new apps to play during the procedure. Finally, I got a video with his very favorite characters (teletubbies!) to work for -- we played it as soon as he was all wrapped and ready to go.

Though they are a necessity, tests like this are very stressful for a little kid (heck, they sometimes drive this momma to drink...), so I've been actively seeking ways to make them less traumatic for Simon. Therefore, to help him cope, I've enlisted the help of a behavioral psychologist that specializes in kids with needs like ours. I've also applied my own creativity to the problem as best I can and am continuing to look for ways to make things better.

I'm pleased to say the effort has made an enormous difference. Our last EEG involved a lot of screaming, crying, and kicking (not to mention what Simon did!). Though, I can't say Simon enjoyed the process, this time around he was a LOT more comfortable and we were able to work through the rough patches without having to put anyone in a headlock. Now that's progress!

All wrapped up and ready to go! Simon enjoyed popcorn and a new teletubbies video as a reward for being as cooperative as possible while getting connected to the EEG.

Unfortunately, the results aren't quite what we had been hoping for. Though it is improved, his EEG is still very abnormal and filled with subclinical seizure activity -- looking for all the world like silly string streaming through his subconsciousness. I noticed it right away (I did a fair amount of peeking at the screen during the test, I am getting pretty good at this neurology stuff...) but his actual neuro confirmed my "diagnosis" today at our follow-up appointment.

For now, this means that the current medicines we have been trying aren't enough. Because surgery isn't an option, more medicines have to be tried. They have already increased the meds he is on (and which he isn't tolerating particularly well -- he is tired, irritable, and vomiting at least a couple times a day), and we will do another blood draw next week to see where he is with those. In the meantime, our quadrant of neurologists will confer to see what other medicines we should try next.

I'm worried about what more drugs will do to Simon (I am also worried about his resistance to the drugs since it is already an issue...), but I am also trying to focus on the positive. Since we have uncovered the ESES and have started to treat it we have seen global improvements in Simon's awareness -- especially his eye contact and use of language. Every day he does something that surprises me -- whether it is using a pronoun correctly, asking a new question, or building with duplo blocks (for the first time EVER!) and pretenting to be a giraffe -- our days are a mixture of worry and miracles. Though they make strange bedfellows, I am learning to adapt to it. It used to be that my go-to phrase where many things Simon were concerned was "It is what it is." Now, I find that "Carpe Diem" is a more frequent and fitting mantra.

I think I am going to need a new necklace...

Carpe Diem necklace on Etsy...xmas present to self?