These days are hard

I’m currently laying next to Colleen, my hand draped lightly across her back, hoping it’s enough comfort for her to sleep. It is just enough in this moment to keep her peaceful, so I dare not move. Her sleep is barely tethered to the first stage it seems, and we are both exhausted.

Everyday is something different and it was my hope that by now, she’d be doing better. But, here we are, far past this being a “stage” and into unanswerable territory. Last Tuesday, desperate for answers, Colleen was brought to the local pediatric ER. I know it wasn’t an emergency at all, but I felt that if someone didn’t help, I was likely going to be the one in the ER. The anxiety has been terrible…

My fears of being judged for bringing her in quickly faded when they decided to admit her. I had suspicions about the root cause, but I needed answers. Because three weeks of this was far too much.

After regressing a lot in her areas, especially energy, her ability to walk and daily seizures and myoclonics, we were finally able to get neurology to add a new medication, a Onfi (clobazam). By day 4, it was clear this AED was controlling far more than her seizures. After a little back and forth and a trip back to Boston, we got the dosage down and side effects that were manageable. Not ideal, but still manageable.

It still proved to be too much, and her behavior steadily worsened. Colleen wasn’t Colleen. Which is why, after three weeks of violent tantrums consisting of throwing herself around, terrible sleep, insomnia, and biting herself or whoever she could get ahold of, she was brought to the Pediatric ER.

I don’t think a stone was left unturned. Blood work, MRI, new EEG…everything was normal. Which was a relief.

But it still left a big question mark as to why this was happening. Onfi side effects were quickly dismissed as not being possible that it was still in her system and capable of causing this.

Luckily, since there was such a huge team, a psychiatrist that saw her listened to our concerns and was able to find a couple of studies from the past that indicated that is was in fact a small percentage of the testing population that did experience these extreme side effects.

We are now currently going on a month of this and I’m still so tired. I am wondering if and when I will have Colleen back.

Throughout the day is so much better than before. We have been meeting her a pediatric doctor who specializes in behavior and have a plan. But, much of it is a waiting game.

I never would have imagined that something like this would have challenged me so much. I’ve felt so lost, hopeless and depressed. It’s one thing to be raising a disabled child and they’re doing well. It’s another thing completely to have her struggling so much, so sad, and to not be able to help her.

For the past few days, it’s been a few nights of okay (falling asleep by herself), then just waking up early, to just downright miserable. Inability to get comfortable, insomnia, smaller glimpses of her upset episodes.

I genuinely hope that by the next post, I can say this was a major hurdle we got through, but we got through it.

Boston

Hull, MA has been our go-to vacation spot for the past few years. It’s right by the ocean, the city and isn’t too terrible of a drive. This year, I decided that along with our vacation, I wanted to see if we could get Colleen in for a second opinion at Boston Children’s Hospital. This started with a phone call. I was actually surprised how relatively easy it was to get her seen there. We gave all of our info, sent her records (where they determined if we would see the Neurology department or the epilepsy department) then scheduled our appointment. 

I asked about an appointment during or scheduled vacation, and they were able to fit is in! 

I swear we pack half the house to take our vacation. We took Colleen’s bed since it’s portable and brought our inflatable mattrice. Learned the hard way last year that Colleen was too tall for her pack-and-play, and she got way too much enjoyment in jumping in the just barely taller loaner crib. After that, it was clothes and some toys for her. 

The drive down itself wasn’t too bad. The biggest issue last year was Colleen eating and drinking before and during the trip and not being able to burp, which meant a very angry baby. She was considerably better this year.

We left Monday. Our appointment with Boston was Tuesday. I had initially looked up to see if we could take the ferry from Hull to the hospital, but the hassle of lugging a stroller and everything required then trying or get on trains afterward just seemed like too much of a hassle, so we just drove.

The actual appointment itself went very well. With so much uncertainly around her progress and all that is happening with her increased amount of seizures, it was incredibly relieving to walk in to a place and have a solid plan. We have some small steps (bumping up her keppra) and possibly changing her med if that doesn’t do the trick. They had a cancelation on Thursday for an EEG, so we took that. The tech asked us if they always looked that way (the amount of spikes) and I said yes, unfortunately. I keep hoping they’ll decrease, but since she’s had so many breakthrough seizures in the past few months, I knew it was unlikely. 

For now, we have another trip planned in November. 

I think in terms of vacation, we’ll definitely have to stay longer. Between traveling to the city and just travel to and from home, we didn’t get to do as much as hoped. There was some beach time, but I really wanted to take Colleen to the hotel pool. It’s a tad warmer than the ocean! We did also get to take her to the aquarium, which she loved. Favorite spot for sure. 


We’ll definitely do more in the city in a future trip.