Every few days or so, I get an email in my inbox from a search engine called Medscape. I subscribe to the search engine and have indicated that I am interested in any articles pertaining to childhood epilepsy and neurology. Generally, the articles forwarded are scientific in nature --quite dense -- and I read no further than the abstract. Lately, there's been quite a lot of buzz about SUDEP (sudden unexplained death in epilepsy patients) -- nothing like an acronym, right? Traditionally, this has not been a subject that neurologists are willing to discuss with their patients, and the reasons are diverse. However, with the advent of "patient-centered care" and more involved parents, there is a demand for information, complete information, and I've noticed that SUDEP is getting a lot more publicity.
So, today, in my mailbox I get this on the subject line:
High Rate of Death in Childhood-Onset Epilepsy
Do I go there? Do I become more informed? Or do I stick my hand in the sand and la di dah out? Those who know me can probably figure out what I do, but I'm wondering whether I should.
sigh... I don't know. I think I might be tempted to stick my head in the sand. If the article said, " Ways to Prevent High Rates of Death" then I would definitely read it. But so many articles just prepare for a worst case scenario that may or may not help us to face whatever may or may not come.
ReplyDeleteWhen my daughter was diagnosed with probable thyroid cancer at age 11 (which turned out to be multi-nodular goiter and ended with thyroidectomy for said nodule at age 15) I read everything I could get my hands on, until I just couldn't anymore. I just couldn't handle the "what-ifs" that were beyond my control. So I read what was necessary. I guess if you feel that this is necessary, then read.
Yes. But with temperance. I think information is a good thing to have, but along with knowledge comes discernment.
ReplyDeleteskim only.
ReplyDelete"Forearmed is forewarned",my mother gave me this little nugget when we were asked if we wanted to have an amnio to definitely diagnose,what we were already certain,was Zoey's extra chromosome.I chose the head in the sand alternative.Worked for me swimmingly but I know it is not the case for everyone.Knowledge is power,yada yada,but again, for me, 4 years later,I don't venture far unless necessary.So after my rambling,I am going to,for you,still go with the sand.After all we have ample supply of it here in California.
ReplyDeleteYou do whatever you need to do and reading it or not reading it won't make a rat's ass of difference in your world. That's what I think. I love you.
ReplyDeleteElizabeth, do you know my friend Karen (her blog is "From Paradise to Plan B")? She has some info on this topic, unfortunately from personal experience. If you decide to "go there," you might want to contact her. xoxoxo
ReplyDeletePersonal inside here: I also subscribe to Medscape but mostly for other subjects, so I skim at best most subjects. But I read and I think you should keep in mind what Dr. Wilner wrote:
ReplyDelete"Patient education on the increased mortality of epilepsy should be individualized according to the patient's risk and other factors, but this information should buttress arguments for improved medication adherence."
No one seems to know what the patient's risks are for certain or how to prevent it. I know you are going to go there because I think I know you well enough to say so, my only caveat is, "When going through Hell, just keep going".
You need to know because that is who you are but of what benefit that may be I cannot say. While knowledge is without question a powerful tool, fear can turn it into a powerful and paralyzing weapon. Not with you I am sure of that, but how about those who do not have your intellectual ability to digest and process information?
Those parents are the ones I truly wondered about after reading the article. I believe that if we are going to forewarn someone about an imminent danger, we must at least offer a route of escape. My two rupees and you know what that will buy you these days.
Read it to what end? The information would not be specific enough to prevent anything in your household, if it was you would read about it in the mainstream media. Any information you would get would just be troubling, no? I say hide.
ReplyDeleteI would, but of course it doesn't mean that you should.
ReplyDeleteYou've been immersed in this for fifteen years--- I doubt the article is going to tell you anything that will radically change your awareness.
ReplyDeleteSo read it if you want, and as Sandra says, apply discernment.
"Should" left the building once you became a parent. Your lizard brain takes over and you do what you do. I sometimes can even do both. Read it and then quickly duck into the sand and admire the lovely view. Hope you have your goggles on either way.
ReplyDeletePersonally I try to stay away from journals because according to everything I (used to) read, Maggie should be long gone.
ReplyDeleteFortunately, Maggie hasn't read any of them and she just takes a lickin and keeps on tickin.
And of course my cynical brain goes straight ot "there must be a pharm co that's about to get approval on a drug that MAY decrease the risk of SUDEP
ReplyDeleteI say read it, take what you like , and leave the rest.
You are an awesomely strong mama!
xoxoxo
I am a parent of a child with Neurofibromatosis. I have chosen not to "go there" with about 99% of articles. I focus on wellness as the other stuff just scares and depresses me. At the end of the day I find reading online articles are not likely describing my child. Our geneticist described it going into the deep end of the pool. We will go there when we have to, if we have to.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteFrom the article:
ReplyDelete"The observation that SUDEP tended to occur in older individuals raises critical questions about the essential nature of SUDEP. Is it the duration of seizures that predisposes to SUDEP? Does childhood have some protective effect, or conversely, are hormonal changes associated with puberty essential for the development of the syndrome? Does progressive autonomic dysfunction related to recurrent seizures ultimately result in lethal asystole or apnea? An understanding of the pathophysiology of SUDEP may lead to other preventive strategies besides the obvious one of seizure control. Recent research in mice has identified KCNQ1 potassium channel mutations that may play a role in SUDEP and sudden death from the long QT syndrome"
Not too bad right?, looking out for long QT in monitoring could be useful.
Elizabeth do you also get the mails form "epilepsia"?
Hey Elizabeth,
ReplyDeleteThanks for letting you know you were discussing this! My feeling? Know it exists and move on. Numbers are meaningless as it's all 50/50 anyway. Either she will or she won't. And you - we - won't get to know until after the fact.
Big hugs to you,
Jennifer
Oops - it's using my old blogger id! It's me, Jennifer, from Yes or NO :) And please forgive the dumb typo in the earlier message.
ReplyDeleteKnowledge is power.
ReplyDelete