The Joy of Conor
Every day with my buddy Conor is a joy because of who he is. Every day with Conor requires extra concern and attention to his well being because of the autism disorder that restricts his life and presents serious challenges to his ability to participate in it like others of his age. Today though autism was the least of Conor's, or my, worries. Today, shortly before 11 am I was upstairs and heard Conor downstairs making various noises ... as he often does. But there was something different about the sounds I heard. When Conor makes noises they may sound unusual at times but he is clearly making them, he is in control. What I heard today was different. Conor was making noises but they were not his usual kinds of utterances, he was not in control. I went downstairs to see what was happening.
When I saw Conor he was lying on his side on the living room floor. His body was shaking violently back and forth. He did not appear conscious and he was not responsive to any attempt to elicit a response. Thick green and yellow fluid had oozed out the side of his mouth. I tried to lift him and it was like trying to lift a pile of 190-195 pound bricks, there was no response. For a brief instant my mind flashed with the possibility that this might not end well. I called 911 and the terrific Emergency Measures Response team were soon at our door. With them to offer direction, and with Conor's big brother providing help, I sat Conor up and then changed him. We were soon on the way to the Dr. Everett Chalmers Hospital where the wonderful staff of the DECH hospital took great care of our Conor with me and Mom beside him. Right now Conor is sleeping on one of our living room couches, with lots of blankets and comfy pillows. Mom is spending the night on the other couch.
Autism is not responsible for today's emergency. We don't know for sure if epilepsy or some other condition was involved. What we do know beyond any doubt is that Conor suffered a grand mal seizure as defined by the Mayo Clinic:
Grand mal seizure
Definition By Mayo Clinic staff
A grand mal seizure — also known as a tonic-clonic seizure — features a loss of consciousness and violent muscle contractions. It's the type of seizure most people picture when they think about seizures in general. Grand mal seizure is caused by abnormal electrical activity throughout the brain. In some cases, this type of seizure is triggered by other health problems, such as extremely low blood sugar or a stroke. However, most of the time grand mal seizure is caused by epilepsy. Many people who have a grand mal seizure will never have another one. However, some people need daily anti-seizure medications to control grand mal seizure.
Hopefully the connections between various disorders ... or groups of symptoms ... known as autism, intellectual disability and epilepsy .... will be studied thoroughly and more time will not be wasted by academics spending years trying to find the perfect, stream lined definitions of disorders which are heterogenous, varied, complex and dangerous to those who suffer from them.
For today I am thankful that my Conor is sleeping safe and sound in our living room. Today I say thank you to the wonderful emergency measures response personnel and the staff of the Dr. Everett Chalmer Hospital emergency trauma ward. Thank you very much.
HI, I am so sorry that all of you went through that and I am glad COnor is ok. I am curious though why you say it isn't about Autism? People with Autism are at higher risk of seizures, especially during puberty. My son is severely Autistic and he has abnormal EEG activity - not clearly defined seizures but we are always on the lookout. Also, I have an autustic student (high school) who is mainstreamed and just started having grand mal seizures in the last year. His are controlled by meds now but when I met with his parents they said their neurologist told them this happens more frequently with people on the spectrum.
ReplyDeleteBest of luck. I hope it is a one time thing and none of you ever have to experience that again.
Hi Emma. I didn't mean that there is no connection between autism and epilepsy. I do know about the high "co-morbidity" rate between autism and epilepsy. I just meant that autism itself was not on my mind yesterday. Seeing my son in the midst of a Grand Mal seizure I had to deal with the seizure period. We spent a good part of the day at the hospital having him examined and some preliminary tests taken. We don't yet know for sure that it was epilepsy induced but I understand that it likely was. Again, thank you for your comments.
ReplyDeleteIs this the first time Conor had a seizure? Regardless of whether it is or isn't, I'm sorry you all had to go through that. It sounds very scary. I'm glad you received good treatment at the hospital.
ReplyDeleteAnonmyous 2:54
ReplyDeleteYesterday was the first time Conor suffered a Grand Mal seizure. We have seen what we thought were seizure activities, Petit Mals,but we were not sure.
Russ had a febrile when an infant - high fever - and the teacher thought he had an absent one earlier this year not just his regular "ignore the world" thing he can do.
ReplyDeleteNow you have me worried and I'm going to be watching as we go through puberty shortly. Anything is possible. My eldest lost all ability to concentrate (started at Xmas, and was put on Adderall in Feb) and this past summer (June to Aug) went into an major fight/flight/anxiety/sensory overdrive (was amazing and unbelievable all at the same time) that lasted until we started Strattera (the Adderall is at 5mg since it caused some really funky side effects but even after 2mths during the summer without it things just went downhill fast) at the end of August. Thankfully, he's regained the upper hand once more on his thoughts.
Hopefully, for Connor it was nothing more than an "oops" and he's feeling much better. Will be thinking of you and yours and hoping all is well.
We feel for you and Conner, epilepsy is a frightening disease. (I have always kept one eye open for signs in Ben, but nothing so far.)
ReplyDeleteAh, more stuff to learn about, eh? Wulf started seizures after Risperdal - he was part of the pediatric protocols; a statistically significant tie to seizure activity was found. Is that the autism, the risperdal, or what? I guess I'll never know. After Wulf burned our house down and ended up (briefly) in a residential school I found he was doped to the gills, presumably to treat the seizures (grand mal, absence) but in actuality to make life easier for staff. Keep an eye on Connor, and do your reading. Oh, and get a dog, if you can - our dog is an early warning system for seizures.
ReplyDeleteI'm so sorry to hear this. I hope Connor is doing well. Is this the first one he's ever had? If so, often a full blown tonic clonic seizure is a clue that Connor may have been having undetected sub-clinical seizure activity for a long time. Is he on any new meds that may have brought the seizure on? Is he sick? Did they do a cat scan or EEG?
ReplyDeleteHi Kim, Conor has been back in full "Conor mode" since the day after the seizure. At the emergency ward of the hospital they took blood and urine samples and we are working now to get an MRI and EEG scheduled.
ReplyDeleteWe had observed what we thought might be Petit Mal seizures, eyes rolling back and Conor "absent" from the world for brief instances in the past. We did inform the developmental pediatrician but it was decided not to do any invasive examination since he was not falling or anything else remotely like last week. We are on full alert now and I strongly suspect epilepsy given the high autism co-morbidity but I guess the further examinations will tell the tale. Thanks for your concern. Hope all is well with you and your family.
FW2 and UseTheBrains, thank you for your thoughts and conerns. Conor is doing well now. We wait further scheduled exams .. MRI and EEG to confirm epilepsy or any other possible condition.
ReplyDeleteSo sorry to hear this Harold. A similar thing happened to our child last spring. It was terrifying to watch as this had never happened before either. Through many doctors visits we have discovered Dysautonomia issues and viruses trigger these problems. The MRI and EEG will be helpful. (I am assuming they did a CT at the ER right afterwards).
ReplyDeleteSo sorry to hear about this! Very frightening!
ReplyDeleteHoping all is well.
Heather