Vinnie’s Story

As told by his Mom, Rachel.

Initially I didn’t feel ready to share Vinnies story. Despite wanting to yell from the roof tops the different ways epilepsy can look and raise awareness, his story isnt over. It doesn’t YET have a happy ending, of seizure control.

However, his story tells the resilience of a funny amazing boy, who uses humor and charm to tackle his setbacks. It shares the brutal reality, that is not linear. After reflecting I think this unfinished version is still worth sharing. After all, most of us are living in the not yet solved parts of our stories. These messy parts seem just as deserving to be told as the polished up finished versions.

Vinnies first known seizure happened when he was 4 years old. He suddenly woke from his sleep, screamed out, and was unable to move his legs, this was followed by his legs shaking. Our parenting gut was that our son had experienced a seizure. I had grown up with a younger sister with epilepsy, and our daughter had febrile convulsions; this seemed very similar, but because he was aware during the incident, the ER doctor put this down to rigors and over anxious parents. These seizures kept happening, maybe once a month. Vinnie also started experience chronic pain in his legs, and he would often wake from his sleep screaming in fear. A second and third opinion all ‘reasured’ us our son was a perfectly healthy boy, experiencing growing pains and restless legs, but, my gut was screaming different.

He then had a period of time where he just kept suddenly falling over. This time his Dr said Vinnie was falling over for attention. I knew to my core this was not the case but I felt helpless, paranoid I was wrong, and like I was failing my boy in a big way.

Luckily we are a military family and we soon moved from this area. The overseas move made Vinnies symptoms worse, he was having almost nightly seizures during this transition, but thankfully his new pediatrician listened and took us seriously. They reffered Vinnie to his first neurologist. That appointment felt like the weight of the world had been lifted. I could have cried, we were being believed and listened too.

His diagnosis would still take another year of tests, genetic pannels, eegs, MRIs, he even had needles placed in his legs with small electric currents to check for dystonia and other muscular disorders. His EEGs were all abnormal, but not conclusive. He also gained new seizure types, myoclinic (like tics) and he would have periods of temporary paralysis. His Neurologists described our son as a puzzle, not yet solved.

It was when we were finally reffered to his 3rd neurologist, who specialised in pediatric rare types of Epilepsy that we got some answers. This time, he knew right away, from the eegs and videos we caught on petcams, that vinnie had focal epilepsy. Vinnies first tonic clonic seizure during an in hospital eeg confirmed this. We were also told vinnies sleep was showing 50-85% abnormal seizure activity.

Over the next few months we realised how much vinnie had been regressing slowly over time, his motor skills were significantly behind where they should be for his age, he was finding learning to write and other fine motor tasks hard, he was also falling behind academically in areas he had previously excelled in. Vinnies mental health was also becoming increasingly concerning.

We continue to go through cycles where his medication controls his seizures and he leaps in development, then come the side effects, or the seizures return, and he seems to regress again in some way. Medications are then upped or changed and the cycle begins again. His epilepsy is now classed as intractable, meaning not consistantly controlled by medication.

In March of this year Vinnies was given an SEEG, which is like an eeg, only the probes are inserted into the brain by a very clever robot and surgeon. This was done to help find the exact spot his seizures are coming from with the hope of removing, or lazering that part of the brain. From these surgeries/ probes we found out some brilliant information, but sadly not enough to go ahead with lazering or removal, this time. We did discover Vinnies ‘tics’ were also seizures, coming from much deeper in the brain. We also learned a ton on how Vinnies brain works and how we can support him better. We discovered he also has ADHD and Sensory Modulation Dysfunction; this has been helpful as managing his Sensory input seems to be reducing seizures to a degree.

Despite being devestated that Vinnie didn’t get the surgery we were hoping for, with each new revelation, we can help Vinnie more. For example after we discovered the regression he was reffered to Physio and Occupational therapy, which is incredible for Vinnie and continues to help him reach his potential. His improvement is inspiring, he may never get an award for 100% attendance, but in resilience and determination this boy is outstanding. He gained an IEP that makes school easier and provides him with extra tutoring for time missed. He has some amazing professionals in his life that give us so much hope, I will forever be greatful. Most importantly he understands himself better and is learning invaluable coping strategies.

Vinnies ability to bounce back with every test, surgery and seizure is incredible. While in hospital he entertained staff, even putting on an inVINcible magic show on the hospital TV, for other children to watch. During his brain mapping, a procedure we were warned can be distressing, Vinnie had the team in fits of laughter. The neurologist told me it was her favorite in 10 years of doing them – he even got the whole medical team to end with a dance party.

The biggest lesson I have learned is to listen to your gut. You know your own child/self, believe in yourself. If your not feeling like the answers are right, it’s OK to insist on more exploration.

I do hope that one day more people understand how many different types of seizures there are. The brain is very complex and seizures will look many different ways depending on where in the brain they are happening, not all seizures are like the ones shown on TV and dramatic, but they are all Valid. This is still not well known, even within the epilepsy community or even among medical professionals.

Vinnies story is one to be continued, we are currently starting the process again for another SEEG, with the hopes of finding the esact spot his seizures are comming from. We are so close! His team is confident this time will result in knowing if lazering or removal is possible or not. Either way we are SO thankful that with persistence, at times pure stubbornness, and luck, we found a group of professionals that are as invested as we are in giving Vinnie the best future possible!

Kind words you would like to share with a parent or someone newly diagnosed:
Trust your gut and never be too afraid to ask for further investigation, knowledge is the key to support At times it may feel heartbreaking and overwhelming, but there will be wins too, try and make time to feel both.

Connect with Vinnie’s Mom, Rachel:
Instagram: @rachel.lighfoot.395