You are such a ray of sunshine, Sister Bear. Looking at recent pictures of you with your happy smile is especially poignant because we went through a few weeks that were pretty darn scary.
After our family reunion weekend, my aunt emailed to say she had noticed Hannah staring a few times – brief episodes, and she wasn’t responsive when Aunt Kris tried to get her attention. She thought it seemed like petit mal/absence seizure behavior, and suggested we check with our pediatrician.
Aunt Kris is well-versed in seizure activity due to my cousin’s special needs, so we researched petit mal seizures and paid careful attention to Hannah’s behavior. We saw several repetitions of what Aunt Kris mentioned, so I made an appointment with our doctor. The doctor agreed she should be tested and we made an appointment with a neurologist.
Petit mal/absence seizures are very brief (5-15 seconds) and easily mistaken for “staring into space.” A person may freeze in the middle of an activity and then a few seconds later carry on as if nothing happened. This is what happened with Hannah. She wasn’t simply staring – she was unresponsive to a hand waved in front of her face, blowing in her face or tapping her cheeks.
Shortly before the neurology appointment, we attended a birthday party at a gymnastics center. Hannah was running around having a great time. However, twice during the party she came up to me wanting to be held, I noticed the seizure-like behavior, and then she got down and went right back to playing. We had also noticed some increased stumbling/tripping, which we assumed was normal toddler behavior but figured it was worth mentioning.
I will never forget our first appointment with the neurologist because I’m fairly certain it’s impossible to forget the absolute fear felt at the end of the appointment. I saw the PNP and she was friendly and calm, but had a rather serious demeanor. It was obvious that she was concerned by the symptoms and examples I was sharing. She didn’t say anything reassuring and sugarcoated nothing. She simply explained next steps and stated matter-of-factly, “You will need to go to CHOA for an MRI to rule out a brain tumor.”
It took every ounce of willpower I had not to completely and totally lose it right then and there. I did see the doctor at the end of the appointment, and he was slightly more optimistic and reassuring than then PNP. But still.
As I was checking out, the PNP walked past me, patted me on the shoulder and said, “It will be all right, mom. Hang in there.” That did not help my mental state.
I got out to the car, buckled Hannah in, called Mike and promptly lost it. I mean lost it. Poor guy was in a loud restaurant for a work function trying to not only hear, but also to understand what his sobbing wife was saying.
While I knew the odds of her having a tumor were likely pretty low, “brain tumor” is near the top of the list of words a parent never, ever wants to hear associated with their child.
The next several weeks were kind of hell. Work was nuts, Mike was traveling and we had Hannah’s medical testing hanging over our heads. I was worried and very stressed out, which I “managed” by eating a whole lot of crap and breaking out in hives almost daily.
We were so blessed by the handful of friends and family who knew what was going on and who reached out repeatedly to ask about the testing status and let us know they were thinking about it.
There were four parts to Hannah’s seizure testing:
Part 1 – In-office EEG. Mike and I both went to this appointment. They stuck a bunch of electrodes on her head, wrapped her head like a mummy and monitored her for 20-30 minutes. The goal was for her to remain calm and still for part of it and take a nap for the other part. Ha! She managed the still part, and sat stoically in my lap and cried for the entire appointment. As you might imagine, the results were not actionable and so a follow-up 24-hr EEG was scheduled.
Part 2 – 24-Hour EEG. For this appointment, they do the electrode mummy wrap and then send you home for 24 hours. Hannah is almost two and never still. Mike and I about fell over laughing when they told us this plan. When we recovered, our next thought, “OMG we are so screwed!” There was no way our little spitfire was going to manage this for 24 hours. So we did what any sensible parents would do: we called in the big guns. Nana and Poppa arrived the night before the appointment, ready to help.
The next morning, Mike left for yet another trip and Nana, Poppa and I caravanned to the neurologist. The weather was crappy and traffic was just about the worst I’d ever seen it. Go figure. Poor Hannah made it about halfway before throwing up everywhere. Realizing what was happening, I pulled into the next neighborhood I saw, which just so happened to be a country club with million dollar homes. Here come the Clampetts!
I pulled over and jumped out of the car in the rain, hollering “Hannah’s throwing up!” at the direction of my parent’s car that was pulling up beside me. We wiped her down as best we could and put her in my parent’s car, not having a second to spare. (My parents have car seats for the kids, obv. Safety first.)
Finally arrive, a few minutes late, and check-in. My parents arrive moments later, my dad carrying Hannah wrapped in a white towel and looking a little worse for the wear. The Clampetts have arrived!
We were seen right away and Hannah was all trussed up for her big day. She got to pick out a tiny little backpack to hold the monitor. She was excited about that!
As we were leaving, everyone in the waiting room turned to look at Hannah and her mummy wrap. Note she was still wrapped in a towel.
I got in the car to head to work (pretty much right next door) and my parents loaded Hannah up to head for home. Fingers crossed!!
Well…drum roll…
Hannah did awesome!! She did amazing!!
(ahem…except for the fact she got carsick again twice on the way home…)
She ignored the wrap on her head and went about her usual activities. She refused to take the backpack off – even sleeping with it on. In fact, she cried the next morning when we had to take it off to send it back.
We were surprised, but so very proud of her.
(My mom took a bunch of pics, but I can’t find them at the moment…)
We had to re-wrap the gauze at one point, so here’s more details of the electrodes. They were stuck on with some type of paste.
Part 3 – MRI. Oh the MRI. Another experience I’d rather not relive. It was the morning after her 24-hr EEG, so my parents were still here to help. (Yes, they are amazing. No, I’m not sharing them.) Fortunately we were able to do it at the outpatient center near our house and didn’t have to travel all the way down to the hospital.
(“All the way down.” Bittersweet…we used to live 10 min from Scottish Rite.)
There was hardly anyone there, which was a stark contrast to the visits we’ve had at the bustling hospital and adjacent outpatient center! They had just gotten a fun new toy to distract the kids, so Hannah took a few spins in a blinged-out Mercedes. It was fairly awesome.
Still a bit wary of doctors and still hating the pulse ox – but overall the prep went fine. The nurse said the anesthetic would be propofol. It helps patients fall into a deeper sleep (important for how still you have to be for an MRI), but has fewer side effects than the typical anesthesia you get for outpatient procedures. She said Hannah would sleep for about 30 minutes and when she woke up, she should be her normal self very quickly.
I went back to the room with the MRI machine. It was a dim, not overly large room. Quite chilly. With an enormous MRI machine in the middle of the room. I was secretly glad I was not going to remain in the room for the procedure because claustrophobia x10.
Anyway, the doctor warned me twice what would happen with propofol. He said Hannah would go limp in my arms in about 10 seconds. This was normal and not a cause for alarm. He cautioned that it was scary to watch, but what was supposed to happen. Ok, I thought to myself. No problem. I’m not one of “those parents.”
Umm, it happened exactly like he described. And it was kind of freaky and unnerving.
We waited back in her little room for the procedure to end. They wheeled her back and she was already moving around. The nurse said when they moved her from the MRI table, she flipped herself over (she’s a stomach sleeper) and woke herself up. This was very unusual and she might be a little out of it for a few minutes.
She cried, screamed and thrashed about for a half hour. She occasionally wanted me, mostly wanted my dad. She was strong and when she arched and failed we could barely hold onto her. At one point when she was a little more aware, we tried to distract her with the Goldfish she pointed at. She threw the bag across the room, sending fish flying everywhere. It was so awful.
While it was happening, my dad and I were so focused on containing her that we just handled the situation. But my poor mom – who is the one with a bit of medical background and understood more what was going on – just had to watch the whole thing unfold.
The doctor came back out at one point and said that this reaction was highly unusual. If it continued much longer, they would have to give her another medication that was basically and antidote to the propofol. He suggested we try walking with her, so we did. The hallways made a square and around and around we went. And around some more. Finally after about 20 minutes of walking she started to calm down.
Eventually we got her calmed down enough to have some juice, get her IVs out and get dressed. We were discharged and after a bite to eat everyone took an afternoon nap!
Part 4 – Results/Final Test. All the news we’ve received so far is good news! Neither EEG test showed seizure activity and the MRI was clear. We feel very thankful!
Based on her symptoms, Hannah was put on a low dose of seizure medication after her initial appointment. The doctor and PNP seemed surprised that her EEG results came back negative, as her symptoms were “textbook” for petit mal/absence seizures. So as a final test, we are weaning her off of the medication to see if the symptoms recur. Fingers crossed they do not!
No comments:
Post a Comment