“I don’t see anything that looks like spasms,” Dr. Thio said to me with excitement. Randomly, I ran into June’s neurologist on my way to the restroom during June’s EEG appointment. I told him June was in the EEG room if he wanted to say hi. In the back of my head I was hoping he would take a peek at her EEG and give us a real-time reading. And he did. He said he needed to take a look at the whole report, but from what he saw on the screen, June’s EEG looked good. Thank God I ran into him, I thought. I wouldn’t want to wait to hear that fabulous news!
After further review of that EEG and an additional 24-hour EEG study, Dr. Thio has confirmed that June is no longer having infantile spasms or any other seizure activity. I’ve dreamed of writing those words for the last year, and I am never going to stop cherishing them. It is a miracle we found a medication that worked after so many others had failed. So what did it, you ask? We think our miracle drug was Topamax, a seizure medication also used to treat migraines in adults, but it could have been a combination of treatments. Here is a little bit of the back-story.
My last post was right before June started ACTH. I didn’t write while she was on it because there wasn’t much to report besides all of the nasty side effects of ACTH. I also wanted to see how it all unfolded before writing an update. Things seemed to change on a daily basis, so I didn’t want to write one update then write something completely opposite the next week. That confuses me and makes me realize how up and down our lives are. Needless to say, it was a bit of a roller coaster ride and sometimes you only have energy to sit back and just go with it. Only when you get away from it, can you understand what you’ve been through.
On ACTH, June gained 6 lbs. in a month, which was a third of her bodyweight. It was like living with the Very Hungry Caterpillar. The drug also made her irritable and uncomfortable. Towards the end of the treatment, she slept most of the day and night because it was difficult for her to do anything else. Even her breathing became labored while resting. It was not fun, and it was difficult to watch, but it wasn’t as bad as I had anticipated. When I look back at it though, I wonder how we got through it, but we did. Thankfully, we had a lot of help from family and friends, and we also had home health nurses to check on June a few times a week. Other side effects of ACTH include high blood pressure and suppression of the immune system, so the nurses kept an eye on those issues as well as June’s overall health.
After two weeks of the ACTH treatment, June had an EEG, and it showed she was still having spasms. I was not surprised because we were still seeing seizures, but there was a dramatic reduction in the amount she had daily. I knew that didn’t mean much though. As I’ve mentioned in other posts, with IS you have to stop the spasms completely; it’s not about reducing seizures. Most of my life I’ve struggled to combat all or nothing thinking, and now I’m dealing with an illness that is really all or nothing. There are no “shades of gray” with IS, how is that for irony?
When the spasms hadn’t stopped, we decided to keep June on the high dose of ACTH for another two weeks to make sure we gave the drug enough time to work. Two weeks later, the EEG still showed spasms. This time I was really disappointed. We stopped seeing seizures at this point, and I was sure that ACTH had worked. But all that matters is what the EEG says, and spasms can be so brief that it is difficult to see them. It was time to move on to something else. The ACTH wean would take a little over a month, so we decided to start Topamax concurrently.
When I left the hospital that day, I felt defeated. June had already tried 8 medications, and we were now moving toward medications that statistically weren’t as successful as the ones we had already tried. I was happy that there were still options, and I was hopeful it would work, but realistically I didn’t think it would. “Stay optimistic,” I said to myself, “but it’s time to accept that June will likely have seizures for the rest of her life.”
About a week later, we still didn’t see seizures. We thought she was still having them, but we were unable to notice them like Dr. Thio had explained. Something different started to happen though. June was alert, responding to noise consistently, and she was really looking at us. We could calm her by holding her when she was upset, which was totally new for us. She just seemed like she was seeing the world for the first time. I’ve talked about her big personality fighting to come out of her small body, and it really was. Whereas before we saw bits and pieces of her come out for short periods of time, now we see her all day long. I imagine her saying, “Mommy, I know it’s been you all this time. I know you’ve been reading, singing, and talking to me. Even though it seemed like I didn’t realize it, I did. I knew your mommy hugs and daddy’s kisses. I knew.”
So a month after starting Topamax, we had another EEG and that’s when we got the good news that June wasn’t having spasms. I didn’t cry tears of joy when the doctor told me. One would think that I would, but I didn’t. I do cry when I see June do new things though. When she started opening her hands and hitting the toys in her gym, I cried. When I went to Target and first bought her a toy at 14 months that I knew she could play with, I cried. When she gives me a smile that I now know is meant just for me, I cry. When I reflect on all we’ve been through this last year, I cry. When I think of the babies and families I’ve met through support groups or in the halls of Children’s Hospital, I cry. Most importantly, when I think about the outpouring of support from family, friends, therapists, doctors, nurses, EEG technicians, and people we’ve never even met, I cry. Those things mean so much more to me than what the EEG says.
I do realize the clean EEG is the reason June is making big strides, but I’m deciding to not let the EEG run our life. I also know it is easier for me to make that comment on this side of things. If someone had said that to me a few months ago I would be saying all sorts of curse words about him or her in my head :). But, it is an important concept for me to emulate because the spasms could come back, and June is at risk of developing other seizure types. I can’t live my life scared of the next EEG. And believe me, if left to my own devices, I could wrack my brain with fears and anxieties that would debilitate most moms. So I don’t. I choose to let it go, and the funny thing is, I actually do. The person I was before June would never have been able to let things go like I do now. I stop as soon as I spiral. I tell myself to enjoy these moments and if June’s seizures come back, we’ll handle it. I’ve already been through something I never thought I’d be able to do. Anything else from here on out, I can handle.
What an amazing teacher June has been to us all. In closing, I want to share a poem that another mother shared with me. I think it sums up June and our journey over the last year.
I believe that God sent you into my life
to give me something to fight for,
to show me there is love in this world,
to give me hope and to bring me joy,
all the proof in God I need is in you,
you are a gift from the heavens.
We know we are not in the clear, and we still have a long road ahead of us, but we took a huge step in the right direction. Thank you so much for your continued prayers and support.