Sunday, December 6, 2009

an entirely hypothetical question for you...

and remember... entirely hypothetical. ;)

suppose, hypothetically, that there is a young child, say 3 years old. now, let's say this hypothetical child has a CHD, a severe CHD, let's say, for the purposes of this entirely hypothetical conversation, HLHS, with some quirks... let's say, stent material in his AV node (the cluster of nerves in the right atrium that controls the pace of the heartbeat). again, this is all hypothetical.

ok, this hypothetical child needs a name. so let's pick one out of the air... Asher.

remember, this is hypothetical. ;)

ok, so there is a 3-year-old boy named asher, with severe HLHS and stent material in his AV node. and hypothetically, that's a bad thing, since it's metal right in with electrical wiring, and one doesn't need to be an electrophysiologist to know that that's not the best combination.

now, this hypothetical child has developed a lovely (ugh) habit of getting sick every few months, and spiking fevers... hypothetically. and when he does this, suppose he seizes. long seizures, lasting 20 to 30 minutes each, until the tylenol kicks in. and once the tylenol wears off, the seizures start again, until the next dose kicks in. hypothetically.

and these (hypothetical) seizures, at one point, ticked off the stent in the AV node, and the (hypothetical) child now has a tachyarrhythmia (heart rate speeds up for no apparent reason). he is on meds for the arrhythmia, so it's under control for the time being.

so here's the question: given the limited cardiac reserve of this particular hypothetical child, is this situation a problem? should this hypothetical child be refered for a neurology consult? should this tendency to seize be checked out, monitored, and treated, if necessary?

i posed this (entirely hypothetical) question to a cardiologist, but her specialty isn't electrophysiology, so i'm not entirely convinced i believe her answer. so i'm asking you, gentle reader, for some thoughts. should i email an electrophysiologist i know and ask him (he wasn't asher's doc, but we saw him all the time... and now he's in winnipeg)? should i ask asher's new cardio in london about her opinion? should i leave well enough alone, and not tempt fate? or should i go with my gut and ask for a neuro consult anyway?

febrile seizures are not a huge neuro issue. in fact, they're pretty benign. they don't really damage the brain. but really, it's not the brain i'm worried about. it's the heart (shocking, i know). can his heart withstand repeated episodes of seizures? this happens every few months, in conjunction with mystery illnesses that i believe are migraines. i'm just looking for some input here. maybe i'm paranoid. this is a distinct possibility. but maybe not. and maybe i have to be paranoid with asher. who knows. but i just don't know how comfortable i am just leaving this situation alone. i almost think it requires some sort of investigation. but i don't know. if you have any thoughts, please post a comment here. thanks. :)


ChristophersHeart said...

Heather - as I read this I was thinking "hmmm, this definetly needs more investigation, some answers" So my personal thoughts would be to tell you to listen to your gut, and from the post, I gather it's telling you to look into it. You know so much about Asher's heart/physiology, and this (to me) sounds like it could very well play a role whether it's now or later. I would be asking his new cardio, and the docs at HSC and I'm curious what the doc out in Winnipeg has to say (forget his name). If I posed this question/scenerio to you regarding Chris, I would guess you would tell me to push for answers, so I'm telling you the same thing. If it turns out NOT to be something to worry about, great, but won't you feel better having asked the questions and finding out some answers? Also - I assume this is something they are very aware of before going in for the arch rebuild and Fontan?

Mom said...

Go with your gut and talk to his new cardiologist, Dr. B., Dr. R. and whoever else will listen and give you some answers. You know Asher better than anyone.

Jenaia said...

I would ask for the consult. I always have to push for them to check things out with Dominic because he looks so good and no one can see how he struggles like I can. If you have a gut feeling....go with it!