To say that 2018 so far has been a roller coaster would be an understatement. We have all been pushed to our limits, then pushed a little farther, then either reeled back in by a loved one or pushed over the edge and caught by our amazing support network.
I'm going to give you a basic story, because I'm guessing there are people who are curious but don't want to "bother" us with questions. For the record, they're not a bother. I'm happy to answer your questions. And if I need a break from talking about it, I'll tell you that, too.
On January 5th, our five month old was diagnosed with Infantile Spasms, a seizure disorder. We started to notice some odd movements and a regression of his abilities about two weeks before. Following our parental instincts, we took him to the ER on a Tuesday evening. We were referred to a pediatric neurologist, got an appointment for that Friday, and saw a doctor who gave us the preliminary diagnosis within minutes. Then we were admitted to Children's Hospital for more tests.
Infantile spasms shows up in a very distinct way on an EEG. Someone who knows what they're looking at can tell right away if a baby has infantile spasms, even if they don't actually have any spasms while they're hooked up. He got hooked up shortly after we got checked in at Children's and received the official diagnosis shortly after. They continued the EEG with video monitoring overnight, but disconnected him in the morning for an MRI. Something about removing the metal electrodes from his head before sticking him in a giant magnet. You know.
The MRI looked good, which was a huge relief. While it would have been nice to know right away what caused this, it's always good to hear that there is nothing structurally wrong with your child's brain. It's likely genetic, but we won't know exactly until we get the results of those tests back.
We started a high dose steroid treatment the first night we were in the hospital. The nurses gave him the medication, which he then proceeded to throw up all over Dad. We came to the mutual agreement that it should probably be given in two doses, rather than all at once. Dad was a fan of that idea.
We were released from Children's after one night, so we went home on Saturday. We made it home and went about our lives, adjusting to the "new normal" and relying heavily on our fantastic network. In case you don't know how steroids can affect a person, I'll give you a little insight. For our baby, they made him constantly hungry and crabby. Constantly.
It was all worth it, though, because we saw immediate dramatic improvement. When we first went in, we were seeing clusters of spasms - 15 or more in a 5 minute span, 5 or 6 times a day. Before long, we were seeing 1 or 2 individual spasms over the course of the whole day. Our first follow up with the neurologist was a little over a week later, and he was very optimistic. He said things were progressing great and there was a chance we could be done with the steroids completely in a few weeks and never see this again.
We were still seeing some spasms the next week, so we called on Monday at the request of the neurologist and got an EEG scheduled for the next day. The results of the EEG were, again, promising. There was dramatic improvement and it appeared that the infantile spasms were resolving themselves. He noticed some movements still, but called it a myoclonic jerk and said that it was something we most likely would not need to worry about.
On Friday and Saturday, January 26th-27 th we noticed a dramatic increase in the spasms. Instead of two in a day, he went back to having one every hour or two. I was able to talk to the doctor on call who told us to hang tight until Monday and call the clinic then. But if he had more clusters of spasms, then we were told to take him to the ER. It was about 10:00 on Saturday night when we saw five spasms in as many minutes, so I packed a quick overnight bag and we headed off.
We got to Children's hospital shortly after 11 and were taken to a room in the ER. It took awhile for them to get in touch with the neurologist on call again so they could figure out what to do with us, but eventually, around 7:00 Sunday morning, we were admitted to the hospital to get another EEG. This one looked about the same as his previous EEG, so we were presented with two options: we could increase his steroid dose to reflect his weight gain (that's right - our kid got too chunky for his medicine), or we could scrap it and try our next treatment option. Knowing that the next option was an injection that was extremely expensive and would buy us a few more days in the hospital, we opted for the steroids.
We already had another EEG scheduled for the following Friday, February 2nd. We didn't notice much of an improvement this time, so we weren't overly optimistic. The EEG still showed improvement over his first one, but was about the same as his other two. The neurologist suggested that we move on to the next option. We were admitted to Children's again, and that's where we are now.
He started ACTH injections on Friday night and will continue with those twice a day for at least two weeks. This is a hormone treatment that can cause high blood pressure, so he's on medication to combat that. It can cause high glucose levels, so we are monitoring that. It suppresses his immune system, so he's on an antibiotic, we're washing our hands very frequently, and anyone who has been sick or exposed to sickness is being asked to keep their distance. It causes irritability, but Tylenol seems to help with that. A combination of his blood pressure medication, melatonin, and benadryl are being used to help him sleep. Basically, he's consuming a small pharmacy. And lots and lots of breast milk. You probably see "injections" and think "that must be awful - poor baby!" I won't lie and say he loves them, but he actually handles them better than his oral meds. We put some numbing cream on, and after a quick poke, he's done. He absolutely hates taking oral meds. It's to the point where we're not even thinking of trying a bottle or solid food because he's so wary of anything we try to put in his mouth. Dad actually had to plug his nose one time so he would open his mouth enough to get them in. How's that for awful?
Now baby and I are just hanging out at the hospital until we know the medication is on it's way to our house. I'm hoping we'll be out of here tomorrow, Tuesday, but I'm mentally preparing myself for longer.
I'm going to finish this very lengthy post with one last plea. Please please please make sure you and your children are up to date on your vaccines, including the flu vaccine. Even if it's only 10% effective, it will help 10 out of every 100 people. Our baby can't get vaccines while he's on these meds, so we're relying on everyone else to help us protect him. The flu that seems debilitating for a few days to a normally healthy child could be life threatening to someone like my son. So don't be offended if we don't want to hang out with you for awhile, even if you are up to date!