Seizures and SPD: Be Prepared, Not Scared!

E’s First Seizure  

Take a look at this picture. What a flippin’ cutie. He just looks like a happy kid – and he was! This was taken before we knew about SPD and it’s connection to seizures.

But this was taken after one of the scariest days of our lives. He was 17 months old, on his first trip to Disneyland.

We were in line to get into Disneyland on the first day of our trip. E was a little crabby, but it was chilly out and drizzling. We were waiting and our anxiousness was playing off each other. He needed his bottle and to get into the Baby Care Center.

It started so fast

We got in and headed to the center. E was crying and felt a bit warm. My husband Adam, and E sat down so I could run to the restroom. Upon my return, E was no longer crying. Adam was holding him facing out, so he could not see his face. I asked when E had stopped crying, and it had been soon after I left the center. I looked at E. Something was wrong. I looked at his eyes – they were looking to the side and he was not responding to me. The world closed in. I don’t know if I was even breathing. I grabbed him, repeating his name. My husband didn’t know what was happening. I put E on the floor as an instinct and tried to rouse him. My husband, who is way more adept at handling scary situations than I, told me we needed to get him to First Aid. I picked him up, and we ran next door.

First Aid

The Cast Members asked what was wrong, and I said something about him being unresponsive. He had been in this state for at least 4 minutes by now. They asked me to lay him on the counter. I did so and backed up, hoping they could magically fix him. Quickly, he went into convulsions. I don’t know if I was screaming or crying, but they tried to calm me by having me sit and breathe. E was taken into a back room with paramedics and we followed. I don’t remember what they did, but I do recall them giving him some oxygen as his was low. The convulsions went on for about 4 and a half minutes.

I didn’t realize until later that because he was in that unresponsive tonic phase before convulsing, his seizure was actually at least 8 minutes long. After he stopped, he laid on me. We went on a stretcher together into an ambulance and headed to the closest Children’s Hospital. I remember them testing his blood glucose level and giving him some shot.

Heading to the Hospital

I calmed pretty quickly on the way to the hospital. E was being cared for. E was awake but tired. The paramedics were very kind. At the hospital, they checked his temp and saw that he had an ear infection. He’d had them a few times before, so it was nothing new. His temp was around 102 – nothing too terrible for a toddler. He needed a few rounds of meds before it came down. They explained that it was likely “just” a febrile seizure – and it didn’t necessarily mean he would have a seizure disorder. No EEGs or other testing was necessary. Hours later, a Disney van picked us up and took us back to our hotel. We got him antibiotics, had dinner delivered, and rested.

We discussed returning home, but decided that we would just be careful, watch his temp, and finish our vacation.

He had a great time. I watched him like a hawk.

We have returned to Disneyland twice since the “incident.” On the first visit back, I told my husband that we may have an issue returning to the baby care center. We happened to go near to it. I looked at the center and froze up. My heart started to race. I got tears in my eyes. I had to turn away and think about something else. We didn’t go near it the rest of the trip, nor the trip after.

My Knowledge Went Out the Window

I work in the field of developmental/intellectual disabilities. Seizures are not a new thing for me. But this was so incredibly different for two main reasons.

1- This was my own baby. This was my perfect little boy who was hurting.

2- I’d never dealt with a *first* seizure. I have worked with children with seizure disorders. I always knew the kids had them before I saw one. In the facility I currently work in, seizures are unfortunately commonplace. Usually, they really are a nuisance more than anything else. You track the time, get help depending on length and individual (some have more severe responses that require nurse intervention) and document. Mentally, I’m prepared for it. It’s never a fun thing, but emotionally it’s fine.

So, when it was E – all that knowledge went out the window. I knew it was a seizure. But, I knew it shouldn’t last that long, and my heart was screaming: “My baby is dying.”

Not Just Febrile

Thankfully, that first seizure was, by far, his longest and most intense.

After that day, we watched him closely. We noticed things we hadn’t noticed before – like the way he would go unresponsive for a few seconds. Eventually, he saw a neurologist who diagnosed him with “Seizure Disorder.” His MRI and EEGs were totally normal.

That first seizure was in March. During the summer, he had some of those “episodes.” We were in the pool one day, and my mom noticed he stopped responding. We got out and went straight to the shade. He recovered, but was tired.

His seizure disorder is pretty “minor” – he has only had one tonic clonic since then (formerly called grand mal). He has absence seizures and they never go past about 30 seconds. His trigger – temperature. Not fever type temperature, but environmental temperature. He appears to lessen responsiveness around 85 degrees. Thank God we live in the Midwest! We can deal. Originally I am from Arizona and we have a lot of family and friends out there. We just don’t visit during the hot months. We accommodate. I am thrilled to say that his last seizure was at the beginning of LAST summer!

He’s Fine!

A short aside – you know your child. If your gut is saying something is wrong, get it checked out. Don’t concern yourself with people thinking you are an overprotective or worrisome first-time parent.  You can get help for suspected SPD and seizures.

Seizures and SPD – Confusion and Being Prepared

Normal EEG. Normal MRI. Then what’s going on?

I learned about Sensory Processing Disorder about a year after the seizures started. Finally, everything clicked. I will explain more about the connection between seizures and SPD in a later post – but basically, in SPD, the brain just does not process incoming information properly. Regulation is a concern.

It makes logical sense (which is slowly getting support from research) that temperature is another thing that the sensory systems can have trouble regulating. Seizures and SPD are connected. It’s another thing that can be “too much” to handle – just like sudden loud sounds.

Back when all this was starting, I created a seizure log for E. I have included it below, and encourage you to use it if you are concerned your child may be having seizures – especially absence which can be misunderstood and misdiagnosed as “daydreaming.” Your child’s neurologist would like the data as well as videos if you can catch them!

Be Prepared, Not Scared! You’ve got this.

Download the Seizure Log

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