I was awake at 5:30 this morning, had some breakfast, and was enjoying a mug (not a cup, a mug) of coffee when I noticed that the time was 6:05 am. Startled I jumped up to see if everything was OK with my son Conor. Conor suffers from severe autism disorder and epileptic seizures, including half a dozen grand mal or tonic clonic seizures, since last Christmas. One feature of Conor's autism disorder is that he gets up at precisely 6:01 a.m. every morning. He often wakes up before 6:01 but stays in bed until that time and then gets up. Until this morning I can not recall the last time he might have slept in past 6:01. I was worried when he had not come out of his room by 6:05.
I worried because of the epileptic seizures from which he suffers. (My fear was brief; gone as soon as I ran into his room and saw him stirring) Some who suffer from such seizures have been known to die in their sleep with no clear explanation, a condition called SUDEP, sudden unexpected death in epilepsy. A special program called The Center for SUDEP Research which will be a "Center Without Walls for Collaborative Research in the Epilepsies" has been established in the US by the National Institute for Neurological Disorders and Stroke (NINDS) to tackle SUDEP.
A NINDS press release provides an overview of SUDEP and a brief description of the plan of action:
"While the causes of SUDEP are currently unclear, mounting evidence points to seizures that induce structural defects and/or brain circuit malfunction in areas that control cardiovascular and/or respiratory functions. Using a multidisciplinary approach, scientists and clinicians participating in the new center without walls hope to understand what causes SUDEP and how can it be prevented.
One team of researchers will identify genes, predisposition to neurochemical imbalances, and structural irregularities in the brain that may increase the risk of cardiac arrhythmias and respiratory disruptions in epilepsy. In parallel, another team will develop a sophisticated repository for storing and sharing genetic, tissue and clinical data samples collected from 400 study participants with epilepsy per year for three years at each of 10 clinical sites across the country. This team will also analyze the collected samples to identify risk factors for SUDEP."
Some may question why I would have been apprehensive about the possibility of SUDEP when my son did not come out of his room at 6:01 am. The primary reason is that his adherence to the 6:01 routine was until this morning almost without exception, a feature of his severe autism disorder. The second reason is that a good friend who was, and is, very active in autism advocacy in New Brunswick lost her adult son to SUDEP. In that case her son appeared to be sleeping in past his usual time just as my son did this morning ordinarily a blessing for both parent and son. Her son, like mine, suffered from both autism and seizures, and was not sleeping in, tragically he had passed in his sleep.
As the parent of a son with severe autism who suffers from epileptic seizures I can not take any break from routine for granted, even very thankfully as it turned out this morning, one resulting from a few minutes of extra sleep.
8 comments:
Thanks for the post Harold. I will be much more vigilant when my son sleeps in. He has only ever had 1 seizure but he is always an early riser. Recently he has slept in occasionally and
I have just been grateful for the extra sleep for myself(he is usually a horrible sleeper).
I never new this could happen so thanks for always providing such good information!
Mine too is up at 6am on the dot. He now sets his iPod just incase. Glad Conner was just sleeping in a few minutes longer.
We're off next week to the opthamologist. Seems that "somethings wrong but not certain what" is double vision but no lazy eye and he sees better out of both eyes separately/together than I do with my glasses on. It's a symptom, not "natural" like near and far vision. Always something.... maybe I'll finally get that MRI?????
SUDEP is always on my mind too. I highly recommend the audio/video baby monitors. I've had two different types so far, both were excellent. If you need to "look in" on your charge (my daughter's seizures begin silently), you can do so without disturbing them...and keep those extra minutes of sleep for yourself, knowing all is well. They can mount up on a wall, far from reach, can "see" in the dark and often come with two monitors so you can have one in your own bedroom and one in, say, the office or kitchen.
Hi Harold:
Have you had Conner tested for Dup15Q Syndrome? I did this just to at least rule out this out. It's good to have as much info. as possible since SUDEP is such a fear when you have a child with epilepsy.
Since April 2006 Dup15q Alliance learned of a number of sudden, unexpected deaths of young people with chromosome 15q11.2-13.1 duplication syndrome. These young people ranging from childhood to young adulthood were described by their parents, therapists, and doctors as lively, energetic and affected by the cognitive disability, autism and ADHD that are common with chromosome 15q11.2-13.1 duplication syndrome. Many of these individuals had epilepsy that appeared to be well controlled in some but poorly controlled in others.
Here's is what is really dangerous (and also infuriating)- the sheer ignorance that goes on at Diary of a Mom blog. These people are adamant that any medical condition (e.g. epilepsy) has nothing to do with the child's autism. These people are unbelievably uniformed. A high percentage of kids on the spectrum will go on to develop epilepsy by their teens, there is a very serious condition which affects about 17% of kids on the spectrum called Autism Related Catatonia (look it up people at Diary of a Mom!) directly related to GABA receptor problems in an autistic person, many people on the spectrum have GI issues directly related to damage in the GI/Neuro system related to their autism. Saying that any of these conditions have nothing to do with autism is maddening when parents are dealing with these serious issues every day. Harold, I would love to see you do a an entire post on the dangers of people minimizing co-morbid conditions in autism and claiming they would have had these conditions even if there were not autistic. That is simply NOT true, insulting to the people dealing with these conditions and so ignorant.
Comment from Diary of a Mom blog:
Karen Eggers says:
August 29, 2015 at 12:37 pm
"Until Autism Speaks leans to include people with autism in the discussion then there will be NO unity….Then again with all the damage they have done…Not sure I would unite with them no matter what they did…
My son is about to turn 18, he is considered to be moderate to severely autistic. He is able to express basic needs but is unable to have a conversation. He also lives with Epilepsy, ADHD, and Asthma, these don’t have anything to do with his autism. In fact both the Asthma and the ADHD precede his diagnosis."
my maternal aunt died of a seizure. this was in the nineties even though I was young I heard that she didn't take her medicine I think that's a load of nonsense as I'm guessing she may have died of a cardiac arrhythmia related to the epilepsy.maybe she did forget to take a medicine but that doesn't mean she died of that exact reason.I have to wonder could low blood sugar have something to do with people with autism and other DDs dying from cardiac arrhythmias and seizures I almost died of low blood sugar in 2014.I have autism and nf1.I had a second incident of this in Feb 2014. so suddenly I didn't know what's going on so suddenly I didn't know what's going on I thought a heart attack or stroke. I was on the bus when it happen. if you have a child with autism you should check for this issue of low blood sugar it might play a role and seizures and heart troubles.
@w ford-when my child has tonic clonic seizures blood sugar is checked every time either by the paramedics and/or the hospital. His blood sugar has been checked dozens and dozens of times and it is always normal. He's also had many urinalysis and that is always normal as well. It's usually standard but, you're right, it is important to always make sure it is checked.
For an adult with autism and epilepsy, who is at risk for SUDEP, a 1:1 24/hr or at least, in your case, a night respite nurse is justified. I hope you and your lovely wife can get this support so you can rest peacefully at night knowing someone there would hopefully be trained and ready to provide prompt medical care to your beautiful unique son.
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