A person holding a large pen stands on a giant notebook with organizing tabs.

My Son's Epilepsy Diagnosis: Now What?

I can remember sitting in the neurologist's office hearing that my son, Matthew, has epilepsy. The day was October 31, 2008, 2 days away from his 6th birthday. It was one of the scariest and loneliest moments in my life.

The neurologist said we will start Matthew on Keppra and will see you in 4 months. What?! It will be 4 months until you see my child again?!

How it started...

When Matthew was just days away from his 6th birthday, he had started spacing out on us for short periods of time every so often. We initially thought he was just ignoring us, as kids do, but then it seemed different. During one episode of his ignoring us, we decided to poke him and pinch him slightly on his arm to see if we would get a reaction. But there was none. 

On the morning of October 28th, I decided to call his pediatrician just to see if she had any ideas as to what could be happening with him, as he was neurotypical and meeting all his milestones. 

Could this really be epilepsy?

I had gone out to breakfast with some girlfriends that same morning and told them about what had been happening with Matthew. One of them, Kelly, said it may be seizures, her niece experienced them like that. Kelly also said her niece was on medicine, and all was well. I thought for sure, it isn't seizures! If it was, I had it in my head that all would be okay. We would start him on some medicine and everything would just carry on as usual. 

Our doctor wasn't in that day so we made an appointment for the next day, no problem. Later that same day I received a phone call from Matthew's elementary school saying that one of the lunch workers thinks Matthew may have just had a seizure while in line for food. I was terrified. 

Receiving an epilepsy diagnosis

I called the pediatrician's office again and we went in that afternoon for a consult. To be on the safe side, the doctor ordered an EEG (electroencephalography) test at our local children's hospital to see if, in fact, it was epilepsy. 

My husband and I took Matthew to Children’s Hospital Orange County (CHOC) the next morning for the EEG where we learned he did indeed have epilepsy.  

Our world quickly turned upside down and went from bad to worse within 2 weeks of his initial diagnosis. Keppra wasn't working – his seizures were more often, longer, and changing from just staring to full-on tonic-clonic. Matthew's epilepsy had spun out of control. We were inpatient at CHOC for 4 weeks, including our first of many Thanksgivings at CHOC, trying multiple medications.

Trying treatments and modified Atkins diet

I am forever grateful for the doctors at CHOC for realizing that Matthew needed something that they couldn’t provide – at that time, CHOC did not have diet therapies as an option for their epilepsy patients. We were transferred to Barrow's Neurological Institute in Arizona where Matthew was able to start the modified Atkins diet (MAD) along with a medication, Felbatol. 

On the MAD Matthew was able to have 15g net carbs per day. It is a high-fat, low-carbohydrate diet that has shown to help with some with epilepsy. Thankfully, that treatment worked, and we were able to be discharged and home 3 days before Christmas.

Treatments, referrals, paperwork – organizing the chaos

After being discharged from Barrow's I felt relieved that we were getting a better handle on Matthew's epilepsy, but there was so much stuff! Paperwork from the hospitals, medications he tried and failed, insurance paperwork, OT, PT, and speech referrals – a lot of stuff! I was determined to get organized.

I am very old school, and granted this was 13 years ago, but I decided to go with a binder and divider tabs. Every piece of paperwork had a place and was in chronological order. Just by organizing all of this, I had some feeling of control – not over the epilepsy, but something that I could control – the paperwork! I knew where to look if anyone – school, doctor, therapist – needed any information.

For me, having some sort of order to the chaos that my life was becoming made me feel better. Organizing Matthew's epilepsy information brought me a sense of peace over an uncontrollable situation.

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