On Friday, Ryan had a 24 hour EEG (Electroencephalography is an electrophysiological monitoring method to record electrical activity of the brain.) Ryan’s doctor, Dr. Rossignol, suggested that he have a 24 hr EEG to determine if he was having absence seizures that might be interfering with his ability to speak. Ryan was seen by Dr. Rossignol in February while we were in the Orlando area. Ryan really respects Dr. Rossignol and has said DR. ROSSIGNOL IS ALWAYS KIND TO ME. He has been Ryan’s doctor for 6 years now and has helped Ryan through major stomach issues (duodenal ulcers when he was 6 years old) and 3 seizures (2 at home and one while in school, the last one at 6 years old). Ryan mentioned that he wanted to do this while we were at the appointment. I assumed that we would have to travel to California to do this. If I am being honest, this was not really a priority for me nor was it on my radar. Ryan has not had a seizure (that I have been aware of) since April of 2013 and we have tried anti seizure medications in the past and they have some pretty awful side effects (and this was before Ryan could communicate, so we really did not know how they affected him).
We found out that the company that Dr. Rossignol recommends, EEG to Go, was coming to the Dallas area in March, so I managed to get Ryan a slot. Ryan was happy about this, but I was slightly concerned as I knew that this was going to be difficult. We got to the hotel where Brad and Zulem from EEG to Go were hooking up the kids. When we got there, Ryan spelled GOOD TO SAY, HAPPY TO BE HERE. DR ROSSIGNOL SUGGESTED THAT AN EEG MIGHT BE HELPFUL TO FIGURE OUT WHY I CANT TALK.
I was almost in tears and I think that Brad and Zulem were on the verge too. I know what Ryan is capable of and his statement still caught me off guard! I then asked him if he had anything else to say before we started hooking him up or if he had any questions and he spelled THE AIR CONDITIONING IS TOO LOUD. The AC was on full blast and it was a unit near the window and rather loud. Again, he caught everyone off guard.
Brad mentioned to Ryan that he needed to choose a backpack for the recorder to go in. He would need to wear this backpack to keep the recorder close. There were a lot of choices including Batman, SpongeBob, and a few other cartoons. Ryan spelled WOULD I BE ABLE TO USE MY OWN BACKPACK? (This comment did not catch me off guard as I knew that he would think that the backpacks were too babyish). We did have a Texas Rangers one in the car that I mentioned to Brad, but both Randy and I did not want to head back down to get it as we were about to get started. Our plan was to carry down the recorder and use his backpack. That plan changed though.
Zulem started putting the electrodes on this head and Ryan began flinching right away. I know that he knew what to expect, but that his body had a different idea. It was a bit of a struggle to keep him engaged and distracted so that Zulem could do her job.
The process from the time we got there until we left was just under an hour. We left with a Sponge Bob backpack because it was a struggle to keep Ryan from touching anything so we went with it. Ryan did say that he was LOOKING FORWARD TO FAMILY DAY. We had some things planned to keep him distracted.
I sat in the backseat with Ryan the whole way (about 40 minutes) and then we got home. Ryan immediately went to his room like he normally does when he gets home and started to try and pull off the electrodes near his face. Hover mom went into full effect and I followed him all around the house.
We read for a bit in our newest series, The Heroes of Olympus, and then Randy and Grace set up Scrabble for us to play. It was the kids first time playing it. Ryan was still having a hard time, but he sat and was my teammate for the game.
We took a break after about an hour and Ryan and I took Freckles for a short walk (which was allowed with the EEG but we had to return home for the video monitor directly after it). We then did an RPM lesson the history of St. Patrick (it was St. Patrick’s Day when this took place) and that was a good distraction and lasted about 45 minutes.
We went back to Scrabble and played some more. This was still hard for Ryan. After another break, we went back to the classroom table to talk about the feedback that we received after Ryan’s piece that appeared in the National Autism Association of North Texas Winter Newsletter and to work on some business cards about the blog for us to hand out while we are in public. Shortly after we sat down, Ryan fell asleep at the table.
It was very strange and unlike him. I figured that since it was an EEG and we were looking to capture some sleep with it, I would let him sleep for a bit. It was late in the day, around 5:40 pm, so I was concerned about it interfering with his night time sleep. Around 6:10 pm, I tried to wake him, but he wasn’t having it. Each time I would wake him, he would just find a different spot to sleep in.
This went on until 7pm. Once he was finally up, he was miserable. I reached out to another parent who is a veteran at out patient 24 hr EEGs and she mentioned that her son does something similar any time he is tasked with trying as hard as he can to control his impulses. It completely wears him out. I think that this was very similar for Ryan as he almost never sleeps during the day, even when he wakes up for the day at 3am.
Earlier in the day, he mentioned that he wanted pizza for dinner. We rarely ever order delivery pizza, but we did that night. Ryan ate a bit, but was still dejected and rather mopey. He was trying to lay down again.
By 9pm, we decided to let him call it a night and he went to sleep. I slept in his room in a recliner so that I could keep an eye on him. He woke up around midnight and sat up, but I coaxed him back to sleep (which is crazy, because usually when he wakes up in the middle of the night, he is up for the day.) He actually slept until just after 8 am.
After being up for about 20 minutes, I cut the EEG wires and took off the cap of tape and began removing the electrodes (this is part of EEG to Go’s process as these are disposable). This was the only time that he began crying during the whole process. He had had enough and was over it. I got everything off and his demeanor immediately changed. He actually smiled. He had not smiled since we started the process the day before. He was back to himself.
He asked me CAN WE GET A CAKE TO CELEBRATE? I HAVE A NEW LOVE FOR CHOCOLATE FROSTING.
So we did. Randy picked one up at the store and unfortunately, there was no one available in the bakery to write on it. I asked him to pick up some icing for me to do it at home. Well Randy got icing, but that kind required a tip, so I improvised. It was not my best work but I think that Ryan appreciated it!
We sat down that night to make sure that we captured his thoughts about the process while it was fresh in his head. Here is what he had to say:
LIKE TO THINK WAVERING IN SUPPORT OF DOING IT.
I asked him why.
IT HAS TO BE THE HARDEST THING I’VE EVER DONE. UNDERSTAND I TREATED IT LIKE IT WAS MEDICALLY NECESSARY AND THAT HELPED.
I asked him, “Can you explain why it was so hard?”
CAUSING AWFUL PAIN TO MY CALLING IT UNCOOPERATIVE BODY MADE MY TOO MUCH CRAZINESS IN MY MIND CONSUME ME.
He then continued.
CARING TO SAY YOU GUYS WERE AMAZING. LIKE APPRECIATED ALL OF THE FUN THINGS. HARD TO PUT INTO WORDS. CARING TO ALWAYS THANK YOU. LIKE TOO USING IT AS A LEARNING EXPERIENCE. ARE YOU MAD CAUSE YOU GOT NO SLEEP?
I replied that of course that I wasn’t. I told him that I would do anything for him and I wished that I could have worn the electrodes and cap for him.
HARD TO SAY I DON’T WANT TO DO IT EVER AGAIN.
I told him that I understood and that we did not need to think about that right now and that hopefully we would get helpful results from this experience. I then asked him about why he thought that he was so tired.
SO MOM CARING TO THINK I WAS WORN OUT.
I told Ryan that once we got the results, that we would talk about what would be the best course of treatment. I told him that ultimately Dad and I are the parents and we will try to make the best decision for him and that we wanted him to be able to weigh in. If it comes back that there is some seizure activity, we need to decide if the side effects of anti seizure medications are worth the risk.
PLEASE KNOW THAT I AM LOVING BEING PART OF DECISIONS.
We should have the results in two weeks. I really wanted to be sure to write this post so that we could help other parents and children, especially those not able to communicate so much yet, so that families have a perspective of what the experience might be like. This was hard, but Randy and I are extremely proud of how well Ryan did.