On Friday morning we went to the hospital to have Ryan set up for a 24 hour EEG. When we scheduled this test, Ryan was having 8-9 seizures each day, but then his Neurologist adjusted his meds and during the past few weeks he's only averaged 1-2 obvious seizures every few days. (I say obvious because it's always possible that he's having "subclinical" seizures, essentially meaning seizures with no outward symptoms.) I'm not sure that we'll get any information from the test, but we'll see.
It was wonderful to see that the technician who set up his EEG was a familiar face. Susan didn't immediately recognize us, but after I commented on remembering that she volunteered for the Leukemia and Lymphoma Society (LLS) she remembered me, mostly from my "soft, quiet voice." I remembered her because she does a lot of work with LLS, and that just makes my heart swell. They are the organization that sponsored my chemo, meaning they paid $5,000 towards the cost of chemo. It covered some of the costs that my insurance didn't cover. It was such a blessing!
Once we had Ryan's head all wired up, we were actually able to return home for the day. The entire day consisted of someone having to hold Ryan's hands. He seemed very bugged by the "Brain Monitor."
When I took Ryan home, Johnathon and Deborah were immediately concerned and interested. I always explain things in great detail to the kids, both in real medical terms, but then also in terms they can hopefully easily understand and grasp. I called it a Brain Monitor because I knew they could relate it to the heart monitor he had recently had. Then I explained that it was very important to make sure Ryan didn't detach any of the electrodes so that we could get a good "feeding." I meant to say "reading." Friday night when I was saying night prayers with Deborah, she prayed that Ryan's Brain Monitor would get a "good feeding and not be hungry." Nice.
We made it through Friday night and arrived back at the hospital on Saturday morning at 8.30 with only 2 of the electrodes detached. They checked to make sure the recording worked, but we were not given any information on whether or not the EEG recorded any seizure activity. I don't think I'll hear back on that until I talk to our Neurologist. Our next office appointment isn't scheduled until the end of the month.
So, then we went home. Shortly after we arrived home, the arm thrashing that Ryan had been doing all Friday night became more intense and his upper body became involved. It didn't take long to recognize that he was probably having some sort of neurological issue. From about 9-12, he cried nonstop. Nothing helped. He normally calms to a warm bath with Daddy. Nope, not this time. His legs were stiff as a board from just above the hips, and scissored. His upper body was fighting with super human strength.
And, my big mistake for the day ... checking to see if he was teething. I'm lucky I still have a finger tip. What was I thinking??? If you EVER even suspect seizure activity, DO NOT STICK YOUR FINGER IN THE PERSON'S MOUTH!! They really do have super human strength. Ouch! That hurt!
So, at noon, I called the doctor and he said to take him to the ER. I walked into the full Children's ER and they immediately walked us back to a room, with 3 nurses and a Doctor. They all immediately recognized it as seizure activity. How did I not know for certain that it was seizure activity? Why did I wait so long to know for sure?
The ER Doctor was also a familiar face. She has treated us before in the ER. She's a good doctor. We had to stabilize and calm Ryan first. His heart rate was staying above 150 and his oxygen rate was staying below the low 90's. Once stabilized, she ordered scans and x-rays to eliminate the possibility that the seizures were being set off by an infection or a fracture, etc. They gave Ryan a drug called Ativan, which also sedated him. Then they did full body x-rays, blood work, urine collection by catheter, and examined him quite thoroughly. They didn't find any infection or fractures.
As soon as the Ativan started to wear off, the same seizure activity immediately started again. It didn't have quite the same intensity, but it was close. Another dose of Ativan brought the same calming effects. A consult with a Pediatric Neurologist (unfortunately, not Ryan's usual Neurologist) brought a large dose of Keppra. Ryan took Keppra when he was much younger, but it was replaced with other seizure meds when his seizures changed characteristics.
So, they admitted Ryan overnight . He slept off and on through the night. He is awake today and his upper body is again thrashing, for lack of any other term. He doesn't seem to enjoy this. I hope they are able to figure out what is going on for him.
The Hospitalist is also a Doctor who has treated us before and recognized us, and impressively remembered a lot of details. He is trying to reach both Ryan's Neurologist and his Geneticist to see if they want to do an MRI. If we are doing an MRI, the Geneticist may want to order a muscle biopsy at the same time.
Keeping all things in perspective ... we are very blessed to be surrounded by talented people who have sacrificed much to be able to help us. We are very blessed to be cared for by so many people who do their jobs so willingly and so kindly. I am thankful to you for all of your prayers, and would once again ask for your prayers that the Doctors will be able to help Ryan.