I have had my fair share of medical nightmares. It would be one thing if they were MY health issues, but they were not. When it’s your baby who is having unexplained and horrifying things go wrong, it is a WHOLE new ballgame. Here is the best advice I can give.
I think the biggest thing I have learned on the road to a diagnosis is this-
ALWAYS be the ADVOCATE for your child.
Push further. Question things. Demand answers. Demand second opinions. Don’t. Stop. Fighting.
For 2 1/2 years my husband and I watched our son struggle and deteriorate. We watched intense regressions to where he could no longer sit without support at 2 years old. We saw so many terrifying and alarming symptoms, all of which doctors had no answers for.
We had eight hundred million lab tests done. He has literally had so many EEGs and MRIs of his brain that I couldn’t even tell you the exact number. So many hospital admissions that I completely lost count. He’s had two rounds of genetic testing, spinal taps, urine cultures, you name it- the works. Every single test was met with “Everything came back normal.” The doctors were telling us our son was normal, yet he was SO far from that.
It is NOT normal for a two year old who can usually run to randomly fall over and be unable to walk for hours.
It is NOT normal to have random seizures with zero cause, zero abnormal EEG findings, zero abnormal MRI results.
It is NOT normal to have a whole slew of completely random symptoms that do not make any sense whatsoever.
All of this was NOT normal, so how were we supposed to settle and be told it was?
How was it that we watched a little boy grow and develop perfectly as he should…. then one day be slammed with looking up orthopedic leg braces and pediatric walkers?!? How did we go from one extreme to another, yet NO doctor could explain why??
That is NOT what mothers settle for. We do NOT back down and we do NOT take this as an answer.
We demand. We fight. We are relentless.
When it comes to our babies, we will do anything and everything in our power to help them. That is our sole purpose in life- to be able to comfort them and help them grow.
I remember getting to this point of no return. Suddenly, all of the despair and emotional turmoil I had been harboring disappeared. Instead, my emotions turned to RAGE. They turned to ANGER. There was NO WAY that I was NOT going to get an answer for my baby. Hell no. He deserved way more than us just blindly accepting the fate that was being laid in front of us. The future that made absolutely no sense at all and had no explanation as to how we got to it.
So I took to the power of social media. I posted every video I could that I believed truly captured our son’s “abnormal” movements and attacks. I gave a run down of his symptoms and his extensive medical history. I laid everything out on the table for everyone to look at. Was it pretty? Not at all. It was real and it was raw and it was our life. And I NEEDED every single person in the world to see it.
I begged. From the bottom of my heart, I desperately pleaded with everyone I knew to share his story. Get it seen by as many eyes as possible. SOMEBODY, somewhere, HAD to have seen this before. I knew he didn’t fit the classic “mold” of ANY disease or syndrome, but somewhere, I knew that there had to be a person who could help us. I was hell bent on solving this myself. If doctors couldn’t help him, then I would. I would never give up and would spend my entire life, up until my last breath, searching for him.
It was my blind faith that got me to be brave enough to post such a vulnerable, raw clip of our lives. It was a divine force, however, that did the rest.
Somehow, our prayers were answered. A friend of a friend of a friend saw my post. They reached out to their friend of a friend, who had seen something similar. The stars aligned, I had a possible, tangible answer. He did not fit it 100%, and it was a pretty rough diagnosis to stomach if it DID end up being that, but it was a serious possibility and it was a brand new avenue to travel down.
As luck and fate would have it, the expert that was recommended to us just so happened to be located in the same hospital that our son has always gone to. An email was sent with a quick recap of his history and symptoms, along with a mother’s absolutely desperate plea to please help us. I begged this doctor, who was a complete stranger to us, to please see him. He may not fit all of the categories, but it was worth looking into.
I still remember the doubt in his neurologist’s voice. He was on board 100% to explore this possibility, but he was very vocal on the fact that it was highly unlikely we had found our answer.
Thank GOD for doctors willing to listen. Thank GOD for doctors like Susan Cohn, who could have very easily shooed us away with a reassuring “this isn’t the answer” and a “goodbye.” She knew it wasn’t standard, but she agreed to take him on. Meeting with a pediatric oncologist was the last place I ever expected to find myself, but there we were.
As the biggest slap in the face and shock of our lives would have it, the CT scan that everyone expected to be normal, was actually… Not.
Oh my god.
This brought a whole new level of chaos to our lives. Fast forward months later, a tumor found, a tumor successfully surgically removed, and months of treatment…
Our son has found his answer.
Our son is being healed.
Our son will live a normal life without wheelchairs or handicapped stickers.
Our son is being cured.
And it’s all due to the exhaustion, anger, and passion behind a very fed up Mama bear…
and because of a doctor willing to take a chance.
I am forever, and ever, and ever grateful for both of these things. For whatever strength was placed inside of me. For however that voice got inside my head and my heart, telling me to KEEP FIGHTING. KEEP SEARCHING.
DO. NOT. STOP.
That is the biggest and greatest message I could ever send to any other mother going through a medical nightmare with their child. You do NOT settle. You do not take “no” for an answer. You push and you demand, and when they say they’ve done all they can do… you demand MORE.
These doctors are wonderful, amazing, ridiculously smart human beings who dedicate their entire life to healing kids. They do not, however, see that child suffering day after day. They do not feel the immense heartbreak that comes with watching your child go through something you CANNOT take away or make better. They do not stay up until 2:00 AM, sobbing over their child, begging God for an answer, researching and logging into case studies and taking notes and SCREAMING into pillows. They do not watch their entire life fall apart and crumble around them because no one can help them.
Mamas though? Oh, they do. And it’s the mamas that will never, ever stop fighting for their babies.
Hell hath no fury like a fed up mother.
Diagnosis: Opsoclonus Myoclonus Syndrome
Inflammatory Myofibroblastic Tumor
Age of Onset: 3.5 months old
Age of Diagnosis: 2 years and 11 months old
Previous (wrong) Diagnoses:
- Unclassified Ataxia
- Focal Epilepsy
- Generalized Seizure Disorder
- Undiagnosed genetic disorder
I will ALWAYS fight for you. ♥️