Puzzle Pieces

We arrived at the hospital with Rhythm, ready to have the full picture of Rhythm's condition come into focus.  We had so many questions.  Was she still having seizures?  Was the Infantile Spasms gone?  What damage had been done?  We wanted to walk out of there knowing that the Haleigh's Hope Cannabis Oil supplement had been the magic treatment that it had appeared to be.  It got rid of those awful seizures she was experiencing before.  But about those startles she was having.....what were they?

Rhythm was in a better mood arriving at the hospital than any kid had a right to be.  This picture below was us in the waiting room before being called in for her MRI.

The MRI was stressful.  Rhythm was to be sedated, and there is always a risk that someone will not react well to sedation.  The MRI was going to give us a picture of Rhythm's brain and show us what, if any, damage existed.  They started the sedation, Rhythm was out, and then the process began.  Not as stressful as the wait.  The procedure was over in about 30 minutes, and we waited for Rhythm to come to.

We would not learn anything about the MRI for another 24 hours, so it was on to the EEG.  We were moved to the room we'd be in for the 48 hours, and waited anxiously for the EEG Tech to come in and hook up the electrodes to Rhythm's head.  Personally, I couldn't wait to see her brain waves.  What I did not want to see was something called Hypsarrhythmia, which were the abnormal brain waves indicative of epilepsy and Infantile Spasms.

Initially, Rhythm didn't mind the electrodes and the head covering put on to keep them in place.  I watched in fascination as all were put in place and the brain waves began to appear on the TV monitor, and Rhythm was all smiles.

That didn't last long.  Rhythm grew to hate everything about those electrodes, the head covering, and how ITCHY it was making her head.

We sat and watched the EEG monitor.  I knew what normal brain waves looked like.  Rhythm's brain waves did not look like them.  They had their calm readings, but a larger percentage of the brain waves showed signs of Hypsarrhythmia.  Dammit.  We sat and watched, hoping to see it calm down.  They got worse when she slept.  A definite sign of Infantile Spasms still being present.  We knew somebody was monitoring the readings, and anxiously awaited some sort of update.

We finally had our visit by the Neurologist on staff there at the hospital.  The moment of truth had arrived.  She confirmed what we were looking at was still Infantile Spasms, and those "startles" were actually Myoclonic Seizures.  The way we were made to understand it is that the Haleigh's Hope had gotten rid of most of the Infantile Spasms, but not all of it.  The Neurologist was anxious to get her on Sabril, a pharmaceutical, to attack the rest of the spasms.

Side effects of Sabril: Peripheral vision loss.  That's the only one that stuck.  There were others.  I couldn't get past this one.  Here we were again with the damn pharmaceuticals.  They had failed miserably in the Philippines.  But, getting rid of the spasms was of paramount importance.  We really had no choice but to give it a try and hope for the best.  With me personally, the leash on this medication would be short.

We asked about the MRI, but no results to report as of yet.  It turned out we would have a few extra days in the hospital so they could monitor Rhythm's progress on both the Haleigh's Hope and Sabril.

We got settled into a routine of nurse visits, watching her EEG, watching Rhythm rip the electrodes out of her head and then Rhythm screaming as the Tech put the electrodes back on.  On our third day there, the neurologist gave us an answer to a question that changed everything.  It was stated in such an offhanded way, we were taken aback.

"What can you tell us about the MRI results?"

"Oh, she has PVL.  That would explain why she can't walk and her motor skills are affected."

Wait, what??  What is PVL???  Shouldn't this have been explained a little more clearly?  She left without much clarification, as we were too stunned to know what to ask.  This was a HUGE piece to our puzzle of Rhythm's development.

PVL stands for Petriventricular Leukomalacia.  It occurs when brain cells around the lateral ventricles of the brain die, usually due to a traumatic brain injury.  Lack of oxygen to the brain at birth can cause this.  Having this diagnosis is a very strong indicator that motor skills will be affected and that Cerebral Palsy will also be a condition.

We were not taking that exchange well at all.  We spent hours researching PVL.  The spectrum was wide as to the impact of the PVL injury.  Rhythm fell right in the middle based on her current development.  While not the worst case, certainly not the best case either.  We asked a lot of clarifying questions the next day, and started to understand a little more than we did the day before in terms of detail.  It was frustrating.  Infantile Spasms was still present, she was back on a pharmaceutical and now the PVL diagnosis.

Our initial excitement of getting the whole picture about Rhythm was replaced by the reality of her uphill climb.  PVL is an injury that never heals.  The brain can rewire around it if you are young enough, but it can be catastrophic in adults.  In many cases, Rhythm's body was going to have to teach Rhythm's brain how to do things, instead of the other way around.

After 5 days in the hospital, we headed home.  Unsure of what impact Sabril may have on Rhythm and whether it was going to negate the positive effects of Haleigh's Hope.  We made new medical appointments with our neurologist and another appointment with a team that would assess Rhythm for physical issues.

The puzzle pieces had been put together.  Rhythm's traumatic premature birth had caused a brain injury called Petriventricular Leukomalacia, which directly led to her epilepsy and Infantile Spasms.  The delayed development in addition to the delayed crawling and walking all could now be explained medically.  While the diagnosis was certain, the path forward was not.  It was going to be a long road ahead.


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