A regular EEG is never fun – but how about a long-term EEG where your almost 4 year old is hooked up to cords all over his head for 2 weeks!? That was beyond ‘never fun’! But in order to either rule out brain surgery or figure out where in the part of Ryan’s brain they would do the surgery, it had to be done. We just never thought it would last 2 weeks.
Not knowing what to expect for this long term EEG, I packed up a basket full of Ryan’s toys, his favorite blanket, extra set of clothes for him, and a bag for me with clothes and things I would need for a week. I set everything up for Britney for 7-days to spend with family members and a friend of hers during the weekend. Because the kids had just gotten back from staying with their dads family, I had one or two days with them before the scheduled long-term EEG. The night before our hospital visit, Britney started to get anxious and it all hit that should wouldn’t see me for at least a few days. It was sad that my tough cookie and pre-teen was admitting for the first time in months that she was going to miss me. Reassuring Britney that she was going to be able to come and visit when she’s with my sisters made her feel better about her anxiety.
We had an appointment with Ryan’s Eptilepologist in order to be admitted to the hospital. Once there, we met with the doc’s nurse and told her Ryan’s history with seizures, his medications, and all of the details. The purpose of this long-term EEG was to have Ryan seize so the doctor could see where exactly the seizures are coming from. Once they knew where the seizures were happening in his brain, they would be able to have a better idea of where they could do surgery, if that was an option after the monitoring was complete.
As soon as they had a room ready on the EMU, we headed to our room there. Ryan was all hooked up to the EEG on his head, then went to a box which we put in a backpack. That box had a thicker cord coming out of it and was long enough that Ryan could roam around the room. The cord was plugged into the wall where the techs could read the EEG results as they were happening. The room was audio and visual recorded so they could watch Ryan if he was to have a seizure while we were there. They placed an IV in order to have a place to inject anti-seizure medication while a seizure was happening if they needed it.
For the first couple of days, there were thousands of discharges but no actual seizures. They decided to knock one of three of his anti seizure medications to half to see if that would push the seizures out. With no luck after 2 days, they knocked another medication in half. Again, thousands of discharges but no seizures, they knocked the last medication to half and then took him off of one medication totally. Eventually, he wasn’t on any anti-seizure medication at all. Ryan was acting totally different then he had when he was on all three medications. He was a happy little guy who loved playing, reading, dancing, and was becoming more independent and more verbal! When he looked at you, his eyes were clear, you could tell that he was really looking at you and wanting to interact a lot more! It was awesome to witness. I had my cuddle-bug back.
Every few days, the techs would have to come in and re-glue some of the leads on his head as they were falling off. Ryan did NOT like this. It got to a point where I would take a break and get out of the room during those times…and be the rescuer and “save him” from the techs when they were done. It was so bad that when he saw the techs come in, he would know exactly what was going to happen and start freaking out. If they hadn’t re-glued or moved the leads, though, he could possibly have irritations under the bandaging and the techs wouldn’t be able to see exactly what they need to.
After just over a week, Ryan had to have a new IV placed as he pulled the first one out of his foot one morning when he first woke up and I wasn’t awake yet. Normally for someone this wouldn’t be a problem right? Yeah. Think of this though – a child who is used to being poked (What child should be “used to being poked?) knew how to get rid of the needle in his arm, his veins are not only very tiny, but they roll as well. After the second IV was placed for a few days, it wasn’t working. When they tried to place another IV, it was too hard for them to find another good vein. So instead of putting Ryan through more of the pain and anxiety of getting another good IV, we stuck with some rectal medication if he was to have a seizure. I was familiar with this medication as we use it at home when Ryan seizes.
We planned on being in the hospital for 7-10 days but actually were discharged on day 14. This added a lot of stress and frustration upon other things. Britney was able to come see us when we were in the hospital and it was so nice! The day Brit was to be with her friend for a few nights, my mom brought Brit and her friend up to see Ryan and I. What fun for those girls! (REALLY!) Britney missed Ryan and I so much, and Ryan loved seeing and playing with the girls so much. Britney and her friend call each other sisters (but they get along too well to be sisters! Hah!) and her friend loves Ryan so much that seeing him smile and play and having fun, I think eased their minds even more. My mom kicked the girls and I out of the hospital…so I took advantage of it and the girls and I went to the mall!! (Hey. If you’re in a big city when you’re normally 40 minutes from ANY mall – I’m going to take advantage of taking my girl shopping…especially without the boy?! BONUS!)
We had such a great time! The girls each picked out a set of earrings from Claire’s, tried on funny glasses and hats, and since the Halloween stuff was out, they had a really good time with it. Hanging out with these girls walking around was a heck of a lot more fun than sitting in a hospital room any longer. It was a definite pick me up that I needed and to know my mom was back at the hospital making sure Ryan was comfortable (and napping) eased my mind tremendously!!
One night, my sisters came up and visited Ryan and I. We had been there longer than I thought we would be, and I had forgotten a razor to shave my legs. (TMI? Come on. This IS a mom’s blog!) My sister stopped by the store on her way and picked up a can of shaving cream and pack of razors. GOD BLESS HER! Let’s just say, Ryan used more shaving cream than I did!
Ryan went into the hospital taking 3 medications twice a day – Keppra, Lamictal, and Trileptal – and came out after 10 days on 1 medication three times a day – Felbamate/Felbatol. We decided after we saw him off of all of his medications as another little boy, to change his medications. The doctor helped us find one of the “big dogs” for medication and when we had Ryan on a good dose, and we all felt comfortable, we were FINALLY able to go home.
Once Ryan was on the new medications, it seemed we were able to see what the 3 medications did together. On the new medication, he was more clear. When you looked at him, you could really see him looking at you! It was like he could REALLY see you. I loved that! He was irritable and hyper active, but since he’s gotten used to his new medication and dose is where he should be, he’s doing amazing. He started walking a week before school started – on his own with NO assistance! He amazes me. He’s becoming more vocal, and although he’s not saying words, he’s more verbal. He’s more involved with whats going on because he WANTS to be. He’s more responsive and finally has that terrible-two look in his eyes when he’s trying to manipulate and get his way.
The end result of the long-term EEG – the doctors still see thousands, possibly millions and billions or trillions of spikes every day in Ryan’s brain. Because he didn’t seize when he was in the hospital and hooked up to the EEG, they were not able to see where his seizures are coming from. The doctor said some kids show a seizure the first time they’re hospitalized looking for where they’re seizures are coming from. Some kids don’t show the staff until the 2nd or 3rd hospitalization…he said, “The kids show it when THEY are ready.”
….I think the Big Guy upstairs has a say in this one more than Ryan does!