Most people who have followed LJ’s journey has at least googled what DIPG stands for or means I want to share some of the signs and symptoms LJ was experiencing for around three months prior to his diagnosis. We had just moved to Alaska so a lot of his symptoms my mind attributed to climate change or moving adjustments, even though in my mama heart I knew something was wrong.
LJ began sleeping like a newborn again. He would wake up about every two hours and just be awake. Sometimes crying, but most of the time happy and just wide awake. We were going crazy and I remember many nights googling “two-and-a-half-year-old sleep regression” and finding some answers and shrugging it all off as a phase he was going through. I remember wishing I had some of those golden hormones that help you get through those newborn weeks.
The next symptom was LJ’s new way of walking down the stairs. He mastered the stairs when we lived in Florida but in the new house, he started to slide the stairs on his belly or on his bottom. I hoped that this was because it was a different set of stairs but in my heart, I knew he should not have regressed like this.
One of his eyes would turn in, sometimes. It wasn’t consistent and honestly, I don’t remember if it was only his left eye. I do remember asking him to look at me and his eye would be turned in slightly. He also began turning his head a little to watch tv.
The next set of symptoms kind of went together because he would act and look like a drunk person. He began slurring his words and I found myself translating for my 2.5-year-old way more often than I should have. I was also walking behind him making sure he didn’t fall or run into any walls as if he was just learning how to walk. He would trip a lot, run into walls, and plain fall down. I was really hoping it was because he never wore boots before or any shoes for that matter, yea, it definitely wasn’t that.
One morning I filmed him peeling a banana, or attempting to at least. His hands were so shaky. He was missing the stem and just overall having a difficult time peeling it. That same morning, December 27th, 2017 he had an appointment at his pediatrician office to discuss all of his symptoms. LJ also had pink eye and when we went to the doctor, I told her that I knew he had pink eye and yes, we would treat that but these were also my concerns, I even showed her the video of LJ and the banana. She attributed all these symptoms to low blood sugar, stating that since they were happening mostly after he first woke up that must be the cause of all these issues. I knew this wasn’t right and after a full blood work panel there was absolutely no evidence of any blood sugar issue or any issue that blood work could show. Yet, this doctor called Joshua and still stood behind her conclusion of blood sugar issues.
In January I posted a video to Facebook of LJ trying to use a clothespin to play a color matching game. He couldn’t do it. The video showed just how shaky he could be and there were so many comments of concern, that he should be seen by a neurologist ASAP. The next morning, we took him back to the pediatrician office, saw a different doctor, and LJ was given a full physical exam and I left with a referral to a pediatric neurologist and MRI.
His MRI was scheduled for February 13th, 2018 and now all we had to do was wait, and YouTube and google every single symptom. I was fully prepared to hear a diagnosis of pediatric Parkinson’s and was prepared to spend a lot of my future time in therapy appointments for LJ with Emmaleigh by my side doing her schoolwork. We all know that wasn’t the case or God’s plan for our family. Our journey would be much more painful.
There is something to be said about “Mama-gut” feelings. I had them for close to three years while we waited on Emmaleigh to be diagnosed with Celiac and again with LJ. Mamas, you have to follow through and step up. If you feel like there is something wrong with your child or even yourself, use your voice and demand action and answers. There is a way to do this gracefully and it will be well received as a patient who cares about their health, most of the time. It can be scary but medical field personnel are just that, personnel. They are doing a job that you are paying them to do. Act as if you are receiving a service, if a waiter brought you Coke when you ordered a Sweet Tea, would you speak up?