Most important of all-he's fine! Everybody's fine.
In the middle of an absolutely ordinary afternoon at home yesterday, Jack's body decided it was seizure time. I was at home but downstairs in my office. Melissa handled everything great, got him on his side, and noted the time and yelled for me who came running up the stairs to see my child blue and seizing. It was over quick and the post-ictal period didn't last long either. Having now experienced 2 breakthrough seizures with Jack, I recognize that a breakthrough grand mal seizure while scary is not nearly as dramatic as his unmedicated didn't know he had epilepsy seizures.
Did it scare me? Of course, it did! Was I overly concerned? No, I was *trying* to be chill. I called our family doctor during the event for reassurance (he's the best) that we were doing all the right things and then left a message for our neurology team on the voicemail I reached at the office at about 215 pm. I also sent a non-urgent message through the portal since there isn't an urgent message option.
I told family doctor that I didn't think I would hear back from neurology since it was late on a Friday and Jack's neurologist is on maternity leave. So we had a plan, he was going to call in an increase in seizure medications to the pharmacy in case we didn't hear back and said that we would just allow neurology to adjust as they saw fit whenever we heard from them. For anybody keeping score, it took me several days to get a call after Jack's second grand mal seizure which gave him the grand title of an epileptic.
At almost 5 pm, I received a call from the very nice neurologist covering for Dr. Gantz who gently chided me that a breakthrough seizure is an urgent matter and I should call the office or the doctor on call not send a message through the portal. I advised that I did also leave a message at the office before closing hours. Once we got through that, she says okay, it's been a couple hours so have you already gone to get his shunt checked? Um, no, ma'am. Another gentle lecture....as long as he has the shunt, he needs to have the shunt checked every time he has a seizure unless there was a known reason for seizure like missed medications or sleep deprivation. It is, in fact, a medical emergency and I should already have him at the hospital.
So, I tried to remain calm, told Jack we had to go, and packed up the favorites as well as chargers. Off to the ER, we go where the front desk nurses nonchalantly (kind of like me) say but it was a short seizure, you didn't use rescue medications, why are you here? Because the neurologist told me I had to bring him in to get his shunt checked. Well, okay and they check us in.
It was Friday, the 13th, y'all. Friday the 13th in the ER. A few traumas came in and a child started screaming. Jack has recently developed a severe aversion to children cry-screaming and ran back out past security. The sweet security staff secured us some headphones (🤦🏻♀️ forgot those at home) so I could Jack back into the waiting room.
The sweet nurses got us triaged and realized that Jack would not do well back out in the big waiting room so they let us wait in a smaller waiting room in the back until a room was ready for him.
Finally got to the room and received the lecture about the shunt again from both the resident and attending ER doctors. 99% of the time it's not the shunt but that 1% is an emergency and I should always always always bring him to the ER if he has a seizure. Shunt series and CT scan and a corrected miscommunication and a few hours later, an agitated Jack was discharged with an increase in seizure medications.
I am so happy he's fine. I am so proud of myself for not freaking out. BUT I am annoyed. If you know me, you know I take care of Jack and I follow the rules. [Hopefully you also know that I firmly believe that God loves you and wants to be in relationship with you, too but that's a different post].
I AM A NURSE. I AM JACK'S MOM. I have taken him to the ER on numerous occasions because I either knew we had an emergency on our hands or we couldn't rule out an emergency without getting checked out. No one has ever told me that he has to get his shunt checked every time he has a seizure. He's been diagnosed with epilepsy for 3 years and the seizure that earned him the diagnosis didn't get a trip to the ER or the shunt checked. If you Google, when is a seizure a medical emergency, shunt doesn't come up 🤷🏻♀️
The American College of Emergency Physicians says, "Call 911 or the local emergency number immediately if:
The seizure lasts five minutes or longer or is repeated.
Injuries have resulted from the seizure.
The person experiences persistent breathing difficulty.
The person having the seizure also has a fever.
The person experiences persistent confusion or remains unconscious.
The person is pregnant, is a diabetic, is injured or appears to have life-threatening conditions.
This is the first time the person has had a seizure, or, in the case of an established epileptic, the seizure represents a marked change from the type or duration of seizure typically experienced." (https://www.emergencyphysicians.org/article/know-when-to-go/seizures#:~:text=Call%20911%20or%20the%20local%20emergency%20number%20immediately%20if%3A,seizure%20also%20has%20a%20fever)
When was this new rule made? Our family doctor wasn't even aware of this rule. If my well-educated self doesn't know it and my very trusted very well-educated family doctor doesn't know it, I bet you didn't know it either and maybe you are the caregiver for someone who has seizures and a shunt so here's my PSA-any seizure in the presence of a ventriculoperitoneal shunt is a medical emergency and the person should be taken to the ER to have the shunt checked.
Now, I know and I hope to never need this information again and I hope none of you do either.
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