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Fighting for a Diagnosis

Updated: Mar 26

Connor in his hospital bed with a drawing of The Memory Bug
Book Cover

I’m so excited to share that the second book from Connor Books in the Grade School Adventure Series has been published!  Connor and the Memory Bug is so special to me.  While the story has elements of fun, wonder and adventure, it’s also a real look at the challenge having episodes that no one can seem to diagnose.  It’s a view from Connor’s perspective, but it’s also a view from his mother Louise.

Connor & The Memory Bug is a compelling story centered around Connor, a young boy living with Panayiotopoulos Syndrome – which is a form of epilepsy. Through Connor's journey, readers will explore the themes of resilience, trust, and communication as he navigates his way to diagnosis and thriving with his condition. An encouraging and heartwarming read, Connor & The Memory Bug is sure to captivate and move readers of all ages. – Book 2 in the Grade School Adventures Series

While we worked hard to convey our experience fighting for a diagnosis, there are so many nuances of patient advocacy, health equity and culturally competent care that are not explored in detail.  In this post, I’d like to talk about Patient Advocacy!  There is no greater fear for a parent than seeing your child sick and no one can seem to help you.  It was just infuriating being sent down so many paths of tests that didn’t yield any clarity of what was happening to my son.  Maybe it’s sleep related – so we did a sleep study that identified mild sleep apnea – so we had a tonsillectomy, but while he sleeps as quiet as a mouse, it didn’t clearly identify what was wrong and the episodes continued.  Maybe it’s gastrointestinal – so we watched and tweaked his diet – so we started taking fiber gummies and explored other supplements, but while he pooped better, the episodes continued.  Maybe it’s epilepsy – so we did an overnight EEG that showed some theta wave activity that may indicate some epileptogenic potential – so we did a MRI where no epileptogenic focus was identified, so we had inconclusive information, but the solution presented was committing to two+ years of seizure medicine.  The episodes were infrequent, maybe one every couple months.  While I consider myself relatively bright, I know I’m not a neurologist, but I know my child and I know what I saw.  He did not have a tonic clonic seizure, it was a blank stare accompanied by a chewing motion and he lost control of his bladder.  It wasn’t a typical seizure, yes more than an absence seizure, but this was different.  They couldn’t figure out exactly what was happening, but resorted to prescribing seizure medicine.  I tried to no avail to explain what I saw, but no one would listen to me.  In fact, I felt dismissed, talked down to, but I wasn’t going to be bullied into putting my son on seizure medicine unless it was clear that it was medically necessary. 

One of the themes of Connor and the Memory Bug is the fact that Connor is such a curious kid.  There is no question that he won’t research to find the answer.  His curiosity is what makes Connor such a fun character and it’s a special characteristic that I love about my child.  So, in the spirit of my curious child, we fought, we wouldn’t stop until we got a clear answer.  This meant I had to request the medical records from our initial visit at our suburban hospital and found out that despite telling me they didn’t give him any seizure medication, they gave him Keppra, which explained why he was so nauseous and made sense of why he became an evil little monster that I didn’t recognize and that’s what you want to put my son one for two years.  While I know this medicine works well for some, it didn’t for my son.  There is a reason a side effect of this medicine has its own name, Keppra Rage!  I also found that they documented his symptoms as tonic clonic, well no wonder the neurologists at the Children’s Hospital wanted to put him on seizure meds.  They didn’t care what I said, they didn’t care what my son described of his experience, so I started recording the episodes and had video evidence of what my son was experiencing.  I refused to give up and sent my share of Nasty-grams through MyChart and any other vehicle I could find to neurology leadership at our children’s hospital.  The department chair of Pediatric Neurology read my messages and called me, listened to me and almost immediately diagnosed him based on our descriptions of what my son experienced.  He even took my son on as a patient and confirmed the treatment plan didn’t require seizure medicine.  Patient advocacy is key!  This was the scariest, loneliest most frustrating year of my life.  My baby was sick and I couldn’t fix him.

I don’t want any parent to go through what I went through; I don’t want any child to be forced to go down so many different treatment paths because they can’t figure out what’s wrong.  Not only do I hope this book gives parents some validation and support in their experience, but I truly hope how Connor listened to his body and communicated his feelings which ultimately helped lead us to diagnosis is a beacon of hope for kids experiencing something similar.

In addition to the book, we are also launching two Connor Book Tools that are used in the book that might be helpful for kids experiencing something similar.  Connor’s Book of Wonderings is a journal used by Connor to write down, draw or journal about all of his questions.  As he learned more about his questions, he would document them in his Book of Wonderings.  Also, Connor’s curiosity leads him to want to understand all the big words uncovered during his diagnosis process.  The Book of Big Words provides a template to document the big word, spell it out, discover what it means and create a sentence using the new big word.  It took us a while to learn to spell Panayiotopoulos Syndrome. Get yours now in the Bookstore!

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