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Monday, December 27, 2010

Safety and Stigma: my doctor's frustrating advice about school.

My doctor told me that I should tell "only people who need to know" about Van's epilepsy.   The reason he gave for this is that "a lot of people just don't understand" --the message being that we don't want to stigmatize him.  We don't want people to "be afraid of him."


So who needs to know?  Surely I don't plan to hang a sign around his neck that says "Kiss me, I have epilepsy,"  but really, how many of the people who care for him every day might find themselves in a scary situation if I hide it from them?  We are in a co-op nursery school where parents work in the classroom.  Does that mean we should tell the parents of every kid in his class?  The babysitter knows, but what about play dates?  The chances of a dramatic breakthrough seizure seem sort of low just now, but that, should it happen, might well devolve into a life threatening situation and quickly.  Do people still wear those medical alert bracelets anymore?  Do I need to get him one?

My dad told me a story once about a kid who worked for him (outdoors, out of the back of a truck, on a construction project) and who didn't tell him about a seizure disorder he had.  This guy had had a major traumatic head injury, and as a result had generalized seizures.  He had one on the job.

Picture this--you hire someone, take them out onto a job, and they "fall out" without warning.  What should you do?  Is this normal?  Is it life threatening?  What if you had sent the kid up a tree, or if he had been carrying a chainsaw?  Does he have an aura that would let him know to put the thing down?   Would you have hired him at all if you had known?

If these questions could have been addressed, a scary situation might easily have been normalized.  On the other hand, I'm sure he kept the information to himself, at least in part, out of fear that he might lose the job entirely.  Workplace exlusion is a real problem for people with epilepsy, and Pollyanna-ish ideas about "normalizing" it seem not to have made much of a dent in the problem.

I want to normalize epilepsy for Van, for me, and for everyone we know, but when doctors give advice like this, I wonder if the world is ready.  My own bias runs to desensitizing everyone by exposure, but Van is just one little guy.  Should I really throw my own son that hard against the brick wall of prejudice?  Is either of us that big?  Should it even be my decision to make?

I think about women who hide their pregnancies at work, and how much easier it is for everyone once the pregancy is announced.  Morning sickness is largely invisible, marginally controllable, predictable, and with a degree of understanding, pretty easy to handle in the workplace.  Sure, it's a challenge, but for the most part, nausea announces itself a few minutes before you toss your cookies on your keyboard, so as long as everyone understands why a colleague keeps running out of meetings, people can work around it.

The scenario looks much worse if the woman has to hide her condition. (and let's pretend we can't guess what's wrong with a 20-40 year old woman who feels rotten every morning and runs off the the restroom a couple of times each hour.)

Suzie suddenly disappears from meetings, shows up late for work, drops phone calls, looks green all day, what's going on?  Is she ill?  Addicted?  Crazy?  Eating disorder?  She's not pulling her weight.  She's suddenly unreliable.  She's pretending everything is ok, and praying no one finds her out--she might lose her job!  She might be stigmatized!

She fights her condition, ignores warning signs, and finally, barfs on the conference table.  This was completely preventable, right?  Humiliating, horrifying for co-workers, and now she's the talk of the office, and not in a good way.

The cutesy analogy breaks down though, with the very "normal" condition of pregnancy.  A pregnancy is something to celebrate.  Epilepsy is something to overcome.

So which is more dangerous, the secret or the truth?

Saturday, November 27, 2010

What do you know about SUDEP?

What I was told about SUDEP was that I should really try not to worry about it. The terms in which they discussed it with me were "Now I know you're going to read about all kinds of scary things online, and I want you to try not to be too worried. They are extremely rare."


In fact, yes, I did read all kinds of scary things, mostly things under the heading "SUDEP" Which, in short, is the tendency for people who have epilepsy to suddenly drop dead for no apparent reason. Boy, that is scary indeed. Also, it is just one of those things. But there are statistics that indicate circumstances under which SUDEP may be more likely or less likely, syndromes that produce more or fewer incidences of SUDEP, demographics which are most prone to SUDEP (young adult males), calling an infant death SUDEP vs. calling it SIDS, in short lots of useful information can be found to help you focus your dead panic when you read that your kid might drop dead, not from a seizure, but, essentially, for nothing. That empowering ability to focus your terror is pretty important for a parent.

This article, is a blood-boiling account of a physician withholding information about SUDEP from a patient's family. As a parent, I thought it sickening, and I can't imagine how this exchange must have affected the parents of the young man who died.

In summary, the doctor elected not to educate the parents of this young adult male, or even to educate the patient himself (remember--he is the textbook candidate!) about SUDEP, perhaps because it was hard for him to talk about. Maybe because the parents would be, essentially, powerless to do anything with this knowledge--though how true that is might be debated. Maybe he thought them overbearing, or approaching the limits of their capacity to deal with their son's condition.

When the bereaved parents confronted the doctor with the obvious question, "Why had we (his doctors) not told them or their son that this could occur?" This doctor answered them with another question, one that--in my dreams--would have precipitated the loss of several of his teeth.

"Would he have lived any differently if he had known?" "If we told every patient about this possibility, some might not dare to live independently, or might be burdened with anxiety..."

Jesus. Who knows why a neurologist would maintain such a gutless and patronizing position?

To me, the obvious reply is "Well, how the hell would you know what people are capable of doing with important information, if you consistently withhold it from them? Who died and made you God, anyhow?"  There are certainly known and, to a degree, controllable risk factors surrounding SUDEP(poor seizure control for one--can anyone imagine a young adult male, having just left the nest, being a little "noncompliant" about meds to control seizures?  Especially if they have unpleasant side effects or interact unfavorably with some other chemical he might want to use?).  While it may be true that SUDEP isn't entirely predictable, it seems reckless to just leave it out of the discussion.  If this person were blind, would you fail to educate him about his increased risk of getting hit by a moving car, out of fear that he might elect not to walk on busy streets alone?  Would your reason be that the behavior of motorists is unknowable and uncontrollable, so the increased risk cannot be mitigated?

The article ends with a piteous "To this day, I do not know if my answer was appropriate."

Oh, cry me a river. Your practice with regard to this patient was insufficient to prepare the patient and family for the possibility of his sudden death. That's the real pity.

Friday, November 26, 2010

Nocturnal Seizures and Ictal Vomiting

So, parents of kids with occipital epilepsy...

Did anyone tell you that you might, one evening, go in to check on your sleeping child and find him asleep in a puddle of vomit?

They didn't tell me that either. They still haven't. I had to look it up.

Apparently, there is a whole list of occipital epilepsies that occur in children, and they often (not always) involve the autonomic nervous system--so you get cyanosis (bluish skin from depressed breathing) or Ictal vomiting (throwing up as part of the seizure--often at the end).

When I reported this to the neurologist on call, he suggested that it might be his medication upsetting his stomach (??) But wouldn't I hear from him if he had a tummyache? He is out cold in a puddle of puke like some drunken rock star. I don't think this scenario is likely.

His doctor, upon hearing my report, said something along the lines of "Mm, hmm." That definitely sounds like something. Let's up his meds and go for a blood draw to check his levels." Sensible? Yes, but not terribly informative.

In fact, a person could read all about this here.

Monday, November 22, 2010

Things they didn't tell me in the NICU--Hypoglycemia "Rebound"

When a baby is born in a hospital, there is a way of doing things. My child was born with extreme hypoglycemia--not really a good way to start a life, but there are worse ways, I guess. A few, anyway.

Mothers have their own ideas about how things ought to go at a birth, and so do perinatal hospital personnel. These can be at odds, but I think that happens more often than is necessary, because childbirth exists in the same black box they keep epilepsy in. There are certainly some real mysteries, but fewer than you might think, it turns out.

A hypoglycemic term baby with a cord abnormality has to stay a little while in the NICU, and it has to down some formula immediately upon hitting the fresh air and having its APGAR recorded. These are not medical mysteries.

As I said, mothers have their own ideas about things. The baby looked fine. FINE!! I wanted to co-sleep, nurse, stare at those little fingers and toes and eyelashes day in and day out. NICU? What the hell!!! Why???

Well, there's a very good reason, as it turns out, but nobody told me what it was.

It seems that term babies with neonatal hypoglycemia (mine, textbook.) will often have a rebound period shortly after birth, during which they will appear fine. FINE!! Often, however, after about 12-24 hours, they will tank, and the effects of the insult will become apparent. This is why your perfectly fine hypoglycemic baby has to stay in the NICU, even over all your protesting. You are still, however, even over all THEIR protesting, free to make a complete pain in the ass of yourself by hanging around your baby day and night. This is what I did, and it was one of the best decisions I have ever made with respect to this child.

The neonatologist, about 11 hours into the game, came over, pronounced him sweet and perfect, and told me not to worry, that he looked perfectly fine (FINE!!), and that we would, in all likelihood be able to bust out of there in a couple of hours.

She must have forgotten about the whole hypoglycemia-rebound-tanking-baby thing because boy was she apparently surprised when he had a spectacular autonomic seizure cluster about an hour later. Two hours after that, he was on a vent, which everyone knows is bad, bad news. She felt horrible, and vowed never to make such a pronouncement to a NICU mom again.

She still didn't tell me about the hypoglycemia-rebound-occipital/autonomic seizure connection. I had to look it up. You can read about it here

What do I know from Epilepsy?

What I know about epilepsy, I know mostly from experience. I love a child who has symptomatic occipital epilepsy secondary to neonatal hypoglycemia. Nobody told me its name, I had to look it up. The most my doctor told me was that he has epilepsy. A neurologist once showed me an MRI scan, and pointed out a bright spider-web-y thing on his occipital lobes, which was pretty scary looking. That doctor asked if my son could see. As it turns out, he can.

I don't know much, but I know how to read. I read bulletins, support sites, studies and scholarly articles. I hope, in this blog, to share my experiences and my reading with...well...with anyone who will listen.

I know what my doctors would like me to know. They would like for me to know that my son has epilepsy. They would like me to know that he might outgrow it and he might not, that he should have his medications on time, and that his caregivers should know how to give him the diastat. They would like for me to know that a seizure that lasts longer than 5 minutes is dangerous, and that his anti-convulsant medication has a favorable side effects profile.

I know a few things they may not be comfortable with. For instance, when I asked my doctor "Is it true that nocturnal seizures with vomiting are characteristic of occipital epilepsy?", I think I heard a little hitch in her breathing. When I said "I also read that this type of epilepsy is sometimes hard to control with medication", she said "Where are you reading this stuff?"

When I told her I was reading academic journal articles, she told me I should read I do, and I recommend it, but it is not the whole story. Not by a long shot.