I’ve been hesitant to write a blog post – our focus is always on Dax’s health and comfort, and writing about updates can wait. There are many emotions involved for Tyson and I. We have to process the new information first as a family and lately there has been a lot to digest. Along with updates about Dax, I try my best to utilize this space for purposeful information that may help another family… I’m going to try my best to sum everything up.
A quick update on Dax’s overnight EEG – we’ve concluded that not all of Dax’s “episodes” that we’ve been seeing are seizures – it’s more related to his abnormal muscle tone. So we have weaned off of a seizure medication and we’re trying a new one to help improve his dystonia. Dystonia is a state of abnormal muscle tone resulting in a muscular spasm and abnormal posture, typically due to a neurological disease. Dystonia, hypertonia, and spasticity are all a part of Dax’s disorder (this has all been explained in previous posts). Dax’s muscles can’t respond efficiently to change in position; sitting, lying down, or even being picked up to be held. His body can be triggered by the change of position as his muscles and body try to respond, and his body can get into a full on dystonic episode of extreme flexing/tremors. After meeting with our normal team of doctors, we were referred to the Comprehensive Movement Disorders and Spasticity Clinic. We are hoping that we have enough feedback from his EEG and enough experts on board that we can reduce these episodes and improve his tone so Dax can be more comfortable.
The last 3 to 4 months have been rough. Dax has been waking up in the middle of the night stiff as a board, arms flailing, and extremely agitated. His dystonia has been so off the charts that his body hasn’t been allowing him to sleep well. Most nights he’s been waking up around 1 AM and he’s awake until 4 or 5 in the morning and some nights he doesn’t go back to sleep at all. Unfortunately with Dax’s disorder – it is a lot of trial and error with medications/dosing and it requires A LOT of patience, brainstorming, and thinking outside of the box. We keep track of Dax’s symptoms, tone, mood, sleep, as well as the intensity/duration/and time of day of a dystonic episode on spreadsheets and communicate closely with doctors to see if a medication is “working” or not. Some medications can take up to 3 months to find the ideal dose.
I’m grateful for the patient advocates that have helped us create a sense of urgency when it comes to Dax’s needs. We initially had a 6 month wait to be seen at the spasticity clinic – we fortunately were able to find availability in July thanks to a patient advocate. It blows my mind that people think it’s acceptable for a child to wait 6 months when they are uncomfortable, agitated, nonverbal, and time isn’t on their side to begin with. And you’d think that going to this clinic would be at the top of the list – but sadly, the system doesn’t work that way… you have to absolutely exhaust all options before something like this is brought into the picture (once again – this all takes A LOT of time). It’s frustrating as a parent and even more frustrating for the child. Dax is so strong and patient, and still rarely complains after all that he has been through.
If you feel like your needs aren’t being entirely heard or met, don’t hesitate to reach out to a patient advocate – believe it or not, just about every hospital has them! Even though we are being the best advocates that we can be for Dax, sometimes even we need a little help. Along with advocating for Dax’s medical needs, we have also been doing a lot of research in our state for benefits that Dax is eligible for.
We now have a handicap placard for our vehicle when we take Dax out – it’s difficult finding a parking spot that is wide enough to get Dax out of the car and into his adaptive stroller safely. We also have Dax enrolled in the medical customer program with our energy company – if our power were to go out, there is a medical alert on our home since Dax has medical equipment. Also, if you do have a child with special needs/disability, search for waivers available in your state and look into community funding. Our system is so broken and these kind of things are not easy to find or readily advertised. Therapies are expensive, equipment is expensive, and you may be eligible for a financial break.
Dax seems to be responding well to the new medication. We’ve seen the spark in his eyes again and he is smiling. Some days are still difficult, but seeing his personality shine through brings me a little peace.
I’m not quite sure where to add this in on this update; but just throwing this out there from our experience: Just a friendly PSA… If you do see a family in public with a disabled child, don’t bombard the person or their family with questions. If you can’t figure out what to say, then maybe just stay quiet. The disabled child shouldn’t be treated like a spectacle of a human and put under a microscope whenever they leave their home. This is a simple reminder to be kind and it’s okay to be different. We had some awkward/uncomfortable situations earlier in the spring; I’m just going to blame it on people getting out of the house for the first time since winter and not really knowing how to behave! Ha-ha-ha..
Aside from the medical stuff, the rollercoaster that Dax has been on, and the people that say dumb things. Dax is still getting out and about! He absolutely loves the aquarium. We’ve enjoyed being outside in the warm weather, we’ve had play dates with friends, and have spent time with family. Dax has a great summer set-up thanks to Variety KC, so it makes it that much easier to leave home and be more mobile!
Dax recently helped celebrate his brother’s first birthday. This past weekend we were able to get together with family and friends. It always worries me that Dax may feel left out because he’s unable to run and play with other children. But all of the kids made their way over to Dax and talked to him throughout the afternoon and everyone made Dax feel far from excluded. As a parent you always want your child to feel accepted, and this past weekend made my heart so happy.
We hope everyone is enjoying the last bit of summer before school starts!
The Story of Dax Wilder 