Silly Hats, Sing Alongs, and EEG's

This isnt one of those funny, upbeat blogs. It's actually one of the harder ones to write. But I believe Carmens story in all its highs and lows needs to be told.

As you all know she has been diagnosed with Absent Seizures, it was actually a little more than a year ago this saga began. Well on Monday we had an appointment to meet with our German Neurologist. Unfortunately, the doctor was unavailable (something to do with his family, I didnt get it all because of the language barrier). We were "told" that we would have to come back next week to meet with him. The receptionist got into it with another woman... than another. It seemed they were arguing about when we had to make the appointment, or if we needed one. I wasnt sure. As it ended up, one of the ladies arguing was a tech and she wanted to give Carmen an EEG. Now, this wasnt part of the original plan, and Im not sure if its routine to go about doing this. Either way, we got dragged into a back room for just that purpose.

Now let me take you back about a year ago and you might remember Carmen getting her first EEG, it was terribly difficult on her, she had a seizure while in the EEG process. She screamed, cried and well.. it was tramatic. We were told first off that she was going to be sleep deprived, than no, we will just put her under, then no, lets just go for it. What a mess that was.

Now you can imagine what I was invisioning in this office after I figured out what they were wanting to do. I was unprepared (as you can imagine) for this kind of procedure. I didnt have time to prep Carmen as I usually do when we start one of these things. And well, honestly, I was in shock myself that they were going to do this in-house. With a child. I tried to explain that we had just one done last year. They asked where... OHSU, Dornbeckers... USA. When I said the states she rolled her eyes and said we had to do another one. Ok, I get that Germans think they can do things better than Americans, but isnt an EEG, and EEG no matter what language its translated into?

So we start this, Carmen screams her head off right off the bat. I convince her that the lady is going to make a silly hat for her and that mommy is gonna take pictures so we can show daddy how silly it really is going to be! Yeah that worked for about 3 minutes. Long enough for me to get these tragic pictures and then she started to cry again.

The EEG itself lasted about 15 minutes,. Applying the cap, then the electrodes lasted about 20 minutes. You can imagine why it took so long.

When they had her hooked up and where monitoring her, I showed her the computer and all of the wavy lines, and told her that her brain was doing that. That it was talking to the computer. I asked her what she thought it was saying, and she told me that it was saying that she wanted to get ouf of the chair and go home. Oh and that it wanted Gelato (at this point I had bribed her with anything I could think of, and we were downtown Ansbach so that would be easy enough to get for her). I truly thought she was a trooper at that statement, only a kid can give that kind of answer!

I was concerned that she would indeed have another seizure during this screaming event, as it was around the time for her normal dose of medication, and she was stressed. If she has a seizure the clock for her recovery sets itself back to zero. But she did great no seizures, and all in all she is getting better with dealing with these stressful situations. She still screamed her head off and could be heard blocks away, but she sat for the whole thing (last time we had to restrain her), and she was able to be distracted for moments in time by what I had to say (last time she was in her own little screaming, crying world and nothing I did or said helped).

The pictures are tragic, I know. And she does look a little funny with the cap pulling her skin back, there was a chin strap too, so that didnt help. But the single tear down her cheek just kills me, hopefully one day this will all be a blur and she will understand what she had to be put through.




she was placing electrodes in these pictures

Carmen was actually trying to smile in this one, how sad does she look?