Prednisolone Pt. 2

Jordan was brought in for another long term monitoring (LTM) on Tuesday and we’re still here and will be staying another night.

Unfortunately, as suspected Jordans spasms have returned along with hypsarrhythmia. My husband and I knew he had spasms but the hypsarrhythmia shocked me. It was very disappointing to hear because that is what contributes to developmental delays. When Jordan had hypsarrhythmia last time I knew because I could see his regression clearly. However, he has been doing so good and making progress in his therapies. He is delayed but he isn’t stagnant or regressing.

For this reason his meds need to be changed so they can address the hypsarrhythmia ASAP. His neurologist decided to do another round of prednisolone and clonazepam. Jordan responded to prednisolone treatment quickly the first time so I am hopeful that he will have the same results that will last beyond the wean. However, his neurologist is concerned because his spasms returned during the wean before, he wasn’t even completely off it. He is thinking of a plan post steroids including the ketogenic diet or the medication Zonisamide. I need to meet with a dietitian today to talk about the details of the keto diet.

I was able to speak to endocrinology today as well about my dissatisfaction with their office. I immediately felt bad because this doctor was so nice and empathetic. She understood where I was coming from with the poor communication and coordination between offices to set up appropriate follow up visits and the stim testing. She provided me with education that because he is on the steroid he automatically has adrenal insufficiency and it's something they need to monitor. They will also need to continue to monitor his growth but they can coordinate with his pediatrician on that. Jordan hasn’t had his vaccines since he was two months old because of all his treatments. I was just going to get him back on schedule this September but, I’m not sure this will be possible because of the steroids.

The most frustrating part of this whole thing is we still don’t have a reason. His neurologist brought up today that Jordans spasms started very early around 2 months of age, maybe earlier by the time we noticed. He said infantile spasms are usually seen around 8 months and this just speaks to the significance of Jordans condition. A condition without any direct cause at this point. Its possible that there is a genetic component that wasn’t picked up by the epilepsy panel and we’re being referred to genetics about this. Or its still possible that Jordan has some type of focal epilepsy. While his spasms are bilateral its mostly on the left side of his brain. Jordan will have a repeat MRI in about a month or two, we need to give it time for the sabril effects to reverse.

Typing this all out has become therapeutic for me. Its a form of brain dumping so I can get all the minor details out of my head and feel like I don’t have to worry about them and I have a place to reference back. At the same time I’m hoping this helps other parents going through this, or with any medically complex child, feel less alone in their journey. Its tiring at times always wondering when the other shoe is going to drop, getting caught in the comparison trap with other children, and being disappointed when you see other babies moving farther along. Its all part of the human experience going through this. You can love your child and support them no matter where they are but also grieve that they will be different.