dopamax

Subsequent to becoming aware of Juniper's condition, I immediately turned my attention to helping her and Laurel get the best resources possible.

I asked Dr. Luke as many questions about how to do the best possible things for Juniper as the physicians, nurses and admissions staff had asked me about Juniper’s background and identity.

Dr. Luke was laser focused on Juniper's seizures. She informed us that other intervention would come down the road. I didn't want to wait. I didn't understand why she didn't have a broader approach to addressing our needs. In hindsight, I will say that her focus paid off. Juniper has been seizure free for months now, she is off of phenobarbital and she is progressing well.

It took some trial and error to get here. First, the seizures were controlled by heavy doses of phenobarbital. Phenobarbital is a barbiturate. It's been around for quite a while. It's used to control seizures in infants in the developed world, and to control seizures in adults in developing countries where better, cleaner drugs aren't available.

This is the kind of drug I imagine John Nash being piped full of before his shock therapies.

It's a heavy tranquilizer and has some nasty side effects, including developmental delays, neurological damage and death due to respiratory failure.

As soon as possible, a few weeks after we left the hospital, Dr. Luke started Juniper on Keppra. I recall seeing "irritable mood" as a side effect of this drug and thinking that Keppra would be a bummer drug to land on long term. I'd later learn that Keppra is a gold mine. It has very few side effects overall and is considered one of the "cleanest" anti-seizure drugs on the market.

Coley and I also heard that it's important to use brand name Keppra - if your child has seizures, make sure you ask for that. Unfortunately, Keppra wasn't the drug for Juniper. She continued to have seizures, though they had been drastically reduced. She was around 3 months old and having just a few clusters a week at this point.

After a few more weeks of tweaking the levels of Phenobarbital and Keppra, Dr. Luke decided to onboard a third medication, called Topamax. As most of us do with new medications, I Googled it. I didn't like the side effect profile of this one. Even Dr. Luke said that this was more of a "dirty" medication.

Several parents online referred to the drug as "Dopamax" due to the sedating qualities it imposed on their children. After my careful Google research, I was convinced this was the wrong drug. I protested to Dr. Luke. She proved, once again, to be an excellent physician. She pacified me and kept on the course that was best for Juniper. To pacify me, she offered a compromise: we would ween June off of the Phenobarbital as we onboarded the Topamax. I accepted her offer and left it alone.

For the first few weeks on Topamax Juniper went seizure free, but she also turned into a tiny little zombie. She had been very vocal before the Topamax and when she started, she fell silent. She stopped smiling. She drooled and slept constantly. It felt that we had lost the little bit of her we had gained. For weeks, she lied there quietly like a lobotomy patient. I was terrified that she has regressed and we would never have her back. I was convinced it was due to the Dopamax.

But eventually Juniper did adjust to the medication. She started smiling again. And laughing. And recognizing us. And interacting with her environment. We had our little June Bug back, and she was seizure free.

Dr Luke, if you ever read this: Thank you. Thank you for saving my little girl’s life. 

I learned a lesson about our journey. Sometimes things have to get worse before they get better. I'd have to accept that about life. I'd have to learn to make more sacrifices, more compromises than ever before. I'd have to let go sometimes and let doctors and specialists do what they are trained to do.

I am just part of Juniper's journey. And I'm lucky to be a part of it.