Just thought I’d share a little. Maybe some parents can relate. To set the stage my 5 year old daughter is very bright and intuitive. She has always insisted on the knowing the “why” of things and can often put concepts together that I thing are above her age level. So you can image how this leads to some very interesting conversations at times. We have always been honest with her and offered age appropriate explanations. You don’t spring anything on this girl. :)
So in the course of trying to figure out the cause of her headaches we had scheduled an MRI. We googled pictures of the MRI machines. Speculated which one they would have for her…the donut or the tube…to take pictures of her BRAIN. Big deal to a kid to see your own brain! Talked about what would happen and the music we would bring for her to listen to. We lookeded at MRI pictures of brains. All the while she was asking what is this, what is that. Here is the brain, this is their tongue, neck etc. A few laughs over the way people noses look etc. “My noses is not going to be the big!”.
So when we got her images back, she was all excited to see them. We reviewed them and explained that we will be going to another doctor so they can look at her pictures. Her comment; “A girl doctor or boy doctor” Me: boy, “ah, I like girl doctors better”. (Again important stuff to a 5 year old)
She has a 17mm inferior cerebellar ectopia, so it is very obvious on the MRI image. So in the course of answering the why are we seeing another doctor, I point out on the picture. So you see this part (ectopia), it is suppose to be up here (in the cranium). Then she says, all matter of factly, “oh, how do they fix that? Drill a hole in the top of your head and pull it up?” Me: “….umm let’s see what the doctor has to say….” Mind you we had never discussed any surgery and are very careful not to do or say things that might make her scared of doctors or dr visits. Yeah, I punted on that one.
We are often trying to get information about her symptoms (without planting ideas that conveniently show up when she has to do something she doesn’t like). I’m going to call it interrogation because I have to kind of sneak it in, when she is ready to share or you get nothing. Ever try asking neurological question of a kid? I have a perfected the kid friendly questions that gain you information in my field, but neuro is not it. When your head hurts do you ever feel funny? See anything funny? Feel dizzy? Tingling in your hands or feets? “Mom, what does tingling mean?” Yeah that one is tough to explain. Months later she told me her hands felt funny. “Like little shocks” So maybe for you parents out there, little shocks might be a kid friendly term or tickles.
I once asked her while in the bathroom does your head hurt when you go poop or just your bottom? (she often suffers from constipation). I get the look like my head is on backwards…”you already asked me that?” OK got it, stop hovering.
Me: “Does your head hurt when you hang upside down?” Her: “Why are you asking me that” Me: “Well some people, that have brains like yours, head’s hurt when they do certain things.” She never answered the question but replied that “when people hang upside down their face turns red, then turns white and then you puke” So there you have it… BTW this is her interpretation, she has never puked after hanging upside and spend most of last summer up down on the swing set. I guess I’ll take that as a no.
It will be an interesting road as we navigate through the upcoming appointments with the neurosurgeons. Can’t wait to hear what she’ll ask them…haha.