Advocacy At It’s Finest

Medical moms know all about advocacy. We often have to take it to a whole new level where some days it feels like that’s all we do. It becomes very exhausting and can take such a toll on our mental health. I will say, this is one part of being a medical mom that I feel goes very misunderstood by people who haven’t been through it. The time, the strength, the energy, the brain capacity it takes to stand your ground and advocate for what your child needs can be extremely daunting at times. 

Recently we found ourselves having to advocate for Mason, and firmly stand our ground. For months, Brian and I had noticed that Mason was starting to decline. His behaviours were becoming hard to manage with hitting, and he was unable to sit still for long. He was having a very difficult time sleeping, which led to him being exhausted and off balance and obtaining repeated injuries. We spent well over 6 months noticing something was off with Mason but didn’t really know what, and that made things very challenging. 

Twice, I took Mason into the ER and told the ER doctor, “I’m not sure what’s wrong, but his behaviour tells me he is in pain and that something is wrong.” Both times they found ear infections and that was as far as those visits went. Mason went home on antibiotics, and while the pain seemed to improve, he was still not himself, both times.

Brian and I decided it was time to seek help from other specialists so we signed Mason into play therapy to see if they could help us work with Mason to communicate how he is feeling. We also signed him up for a block of occupational therapy. Unfortunately, both these therapies had to stop because Mason’s behaviour was so dysregulated that they were no longer beneficial. 

This is when I started to get really frustrated. I brought Mason to our family doctor and explained that I was feeling very unheard, but Mason’s behaviour was telling me something was wrong. I needed someone to do something. She agreed something seemed off and ordered a bunch of bloodwork, and sent a request to our pediatrician to consult. This all came back normal and our pediatrician at the time, wasn’t sure how she could help because things seemed okay. 

After not sleeping for days, I got really fed up with no one seeming to listen or understand that some investigation was going to be needed for Mason. I called our pediatricians office back and vented, in tears, how I needed someone to listen that something was being missed. I sent many photos and videos of his copious amounts of injuries, him sleeping, him awake very clearly exhausted, and most importantly, his schoolwork from the beginning of the year to near the end. His schoolwork was where everyone had a hard time looking away as it was pretty obvious there was a shift in how he was doing. Finally, our pediatrician came up with a theory: Mason might be having seizures in his sleep.

This was a devastating thought, but also made a lot of sense when thinking about the shift in Mason. From here, things were still a bit of a battle. The first step was a sleep-deprived EEG in Kelowna. I booked a hotel for Mason and I as it was scheduled for 08:00 in the morning and I had to keep him awake until midnight and then wake him up at 05:00am and keep him awake. This was fun for nobody. It also didn’t show anything as it was only 35 minutes starting at 08:00 in the morning. A referral was then sent to neurology at BC Children’s Hospital asking for a consult. The following two weeks I phoned repeatedly to get Mason in as we slowly watched him continually declining. I was getting nowhere and being told he was triaged but not urgent so it would be weeks before he got in. 

After another few days of not sleeping and getting some pretty big injuries, I took Mason for a drive to try and help him sleep a bit. I was so tired and beginning to have a meltdown in the car while Mason slept because I still felt like no one was hearing me that something was really wrong. Then an idea came to me. Now that Mason was doing significantly worse than the last two times I brought him to the ER, I could bring him again, knowing that these “seizures” are happening in his sleep and they could be witnessed if he’s there. I phoned Brian and told him of my plan and that I was done not being listened to. At the very least, the ER doctor could phone neurology and hopefully push things forward. 

So off to the ER we went. While sitting in the waiting room, I watched Mason (and everyone else who was watching Mason) while he was bouncing off the wall and enjoying playing with the sliding door. Then I started to notice his shift and knew I needed to make sure the next bit of time with Mason was being watched. Mason went from hysterically laughing, full of energy running around the waiting room, to being unable to keep his eyes open and in my arms. I immediately looked at the volunteer desk and said “Get the triage nurse now please!” Next thing I knew we were in the trauma room. Mason’s body twitching was now being noticed by the trauma room team. An IV went in, bloodwork drawn and Mason fell asleep calmly so everyone except one nurse left to be with other patients. I went to go stand up, and Mason’s whole body jerked up off the bed hitting the rails, and the nurse yelled “he’s seizing!”. The room was full of people again, Mason was given medication and he was back asleep. The on-call pediatrician came in to see him and we got a consult with neurology right away in the ER and the full consult was being expedited to be within the next few days. Unfortunately, the on-call neurology team wasn’t convinced these were seizures so no medication was started. I was told this may be an emotional response to me being away for 6 months with Dylan for his transplant. In my heart, I knew this wasn’t true because Brian and I did everything to make sure that didn’t happen, but it still wasn’t nice to hear, and I was still standing my ground to figure out what was going on with Mason.

A few days later we had our consult with neurology via zoom, and had a thorough conversation about Mason. Again, I was met with different scenarios of it potentially being because Mason’s iron was a bit low, or an emotional response, or that he just needs behavioural therapy or because he seemed to be sleeping all the time it would lead to sleep issues. My frustration built but then the neurologist agreed the only way to know would be to bring Mason down to BC Children’s Hospital and do a longer EEG and brain MRI. She asked if we could bring him down in the next week or two for this, to which I responded with “We will be there tomorrow. I’m not waiting on this anymore”. 

We spent 4 days at Children’s Hospital for testing and Mason now has a diagnosis of non-epileptic myoclonus. Finally a diagnosis! Mason was put on medication, and boy was this a night and day difference! It’s been almost two months of medication now and we feel like we have our boy back! Mason had a big jump in development after we started treatment and it has been amazing to see. It was such a long journey to get this diagnosis for him, but such a significant one. I’ve never been so happy and proud about us standing our ground and continually pushing for what we felt was right. Even though we didn’t know what was wrong, we knew something was, and Mason has been doing great since!