Meet Tyler — Stroke at age 4 months

Aside from dramatically entering the world via emergency C-section, Tyler started out like most babies.  He hit his milestones and his growth was on track.  All of that changed when he turned 4 months old.  It was right after pictures with Santa when it happened – Tyler’s first cluster of seizures; except we didn’t know it was seizures, and assumed it was his bad reflux.  For the next few days Tyler was inconsolable and the “reflux” continued.  We started to worry so I searched the internet and came across “Infantile Spasms.”  The first words I read were “rare” and “catastrophic childhood epilepsy.”  I couldn’t stop crying.

An EEG would confirm what our hearts already knew.  Tyler was diagnosed with Infantile Spasms (cryptogenic).  The neurologist said if we had any shot at Tyler leading a “normal” life we had to stop the seizures quickly and ACTH was our best hope.  We were admitted to the hospital, warned of the horrible side effects, and started ACTH injections.  Our baby spent his first Christmas in the hospital, and after increasing his ACTH dosage, Tyler had his last seizure on Christmas Eve.  A few days later we were discharged from the hospital.

As warned, the side effects of ACTH were HORRIBLE.  We had no idea what was normal behavior and what was not.  It also didn’t help that we were new to living with IS, becoming nauseous and scared every time the baby moved.  Then, one morning, I just knew something was wrong.  Tyler always looked into my eyes while he drank his bottles.  That morning he did not.  He just stared off with his right fist clenched.  He did the same thing at lunchtime.  Something made me think “stroke,” but I decided I was ridiculous.  After all, only the elderly have strokes, right?  When it happened at dinner I panicked and told my husband.  He calmly packed a bag and took Tyler to the ER. He was initially diagnosed with focal seizures and given a dose of phenobarbital.   Once out of his drug daze it was confirmed Tyler did not have focal seizures, but he had gone blind and his right side was paralyzed.  He was rushed in for an MRI.   The brain scans showed significant white matter damage and multiple strokes.  A spine MRI and spinal tap were ordered to confirm that Tyler had a progressive brain disease.  I couldn’t breathe.  It was like my body mustered every emotion and unleashed it all at once.  Right at that moment a nurse came in for vitals.  She told me that Tyler’s blood pressure was high and I snapped.  Every nurse made the same comment at vitals check, but wrote it off saying babies are tough to read.  God definitely took over at that point because I don’t’ know why at that moment I demanded a real blood pressure reading.  The nurse went to the PICU to borrow a special machine.  Within minutes of the reading we were rushed to the PICU.  No explanation or introductions, it was a mad rush and I was asked to wait in a private room.  When I saw my baby again he had machines and cords attached to every limb.  Tyler’s blood pressure was at 240/120, hypertensive emergency levels caused by his ACTH injections.  When I told the doctor our story she said there was a chance Tyler did not have a brain disease and that his brain damage and strokes were caused by high blood pressure.  She said if this was the case, the brain damage would heal.  I still get emotional when I think of that moment because I needed those words of hope so very much.

The next 24 hours were so draining, but worth it.  Tyler’s spine MRI and spinal tap came back normal.  No brain disease, just fatally high blood pressure.  After 3 weeks in the PICU Tyler’s blood pressure was down, he had no organ damage, he was weaned off ACTH, he was one month seizure free, his sight returned, and he had regained movement on his right side.  It shakes me to my core to think how so wrong all of this could have gone.  We are unbelievably blessed, and even though the days are tough we are so grateful for Tyler’s recovery.

Today Tyler is 15 months seizure free and is not on any medications.  He is in a regular preschool with his brother.  He is in therapy 4 times per week, and is making tremendous progress…he even started walking 2 months ago.  We still face the possibility of Tyler’s seizures returning, but we live life one day at a time and give thanks for every day he is seizure-free.  Looking back I think the most amazing part is that our sweet little boy has never stopped smiling.  He has taught us what it is to truly have strength and grace.  It has been a long and scary journey for our family, but our warrior baby has taught us to NEVER GIVE UP HOPE.

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