Through the eyes of a five year old

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.

Thank you SO MUCH for Sharing !!!

Great post. I like the shocks concept

This makes me realize that I’m lucky I was able to have a normal childhood without these debilitating headaches. Bless you and your precious daughter

Wow....this really reminds me of stuff. I wasn't diagnosed until they starting using MRI's with my chiari malformation, yet suffered from symptoms since birth which they diagnosed as something else. I remember thinking when I was a kid that if my head hurt as much as it did when I had a bowel movement, then there was no way I"d ever be able to have babies. Also, I often wondered why no one else commented when they had a cold how much it would hurt their head when they coughed. Hope your daughter does O.K.

Kids have a wonderful innocence about them. They are brave while we are terrified for them. It is funny how they are comforting us through all the hard stuff. I remember when my youngest has brain tumor surgery, I was holding back the tears and panic. He looked at me and said " I'll be fine mom." It was a good thing the staff wheeled him into surgery at that time because I lost the pool of tears! Bless you and your family.

-M

My daughter was a very verbal 3 year old when diagnosed (she is now 5). We did SO many things similar to you, because I just knew her questions would come. In fact, we saw 5 different neurosurgeons that first year, and almost all would ask me to describe her symptoms. When I said "she says her head hurts, and her eyes are blurry. Her neck hurts when she turns certain ways, and she gets dizzy sometimes", and they all looked at me odd, then looked at this little 3 year old and looked back at me doubtfully and said "How do you know?" Hahaha, um...she told me? She says "My head hurts here, my eyes look fuzzy and there are two of you, I can't turn my neck without hurting, and the world looks and feels shaky sometimes" Pretty darn clear to me! :) I knew the surgeon for us was the one that wouldn't let me answer, and only talked to her for awhile. He understood. She was sedated for her MRI's though, even her most recent one a few weeks ago. Was your daughter sedated at age 5?

Oh, and I'm constantly asking her about her body feelings, headaches, and other "funny" feelings. I get the word funny a lot. She also has EDS, so she has lots of "funny feelings" under her armpits and behind her knees (big joints). We still are working on the vocabulary to describe different feelings.

Best of luck :)

She wan't sedated for the MRI. She did great. The techs were also very good. We live on a farm so the tech compared what would happen to riding in the tractor. There are lots of loud noises and its kind of bumpy. I think they had to take some series over because she was "wiggling" but I think the images turned out good. I stood next to her and held her hand..when she wanted me to...haha.. They adjusted the piece that goes over her face so that she could see me in the mirror. The techs would do a series and then let her wiggle. Not too much but adjust her legs or arms. I don't think that is was too big of a deal for her, except it was "Boring". so I think she'll do the next scans also without sedation. She's a pretty cooperative kid so I was glas we could do it unsedated.



Giovanna said:

My daughter was a very verbal 3 year old when diagnosed (she is now 5). We did SO many things similar to you, because I just knew her questions would come. In fact, we saw 5 different neurosurgeons that first year, and almost all would ask me to describe her symptoms. When I said "she says her head hurts, and her eyes are blurry. Her neck hurts when she turns certain ways, and she gets dizzy sometimes", and they all looked at me odd, then looked at this little 3 year old and looked back at me doubtfully and said "How do you know?" Hahaha, um...she told me? She says "My head hurts here, my eyes look fuzzy and there are two of you, I can't turn my neck without hurting, and the world looks and feels shaky sometimes" Pretty darn clear to me! :) I knew the surgeon for us was the one that wouldn't let me answer, and only talked to her for awhile. He understood. She was sedated for her MRI's though, even her most recent one a few weeks ago. Was your daughter sedated at age 5?

Oh, and I'm constantly asking her about her body feelings, headaches, and other "funny" feelings. I get the word funny a lot. She also has EDS, so she has lots of "funny feelings" under her armpits and behind her knees (big joints). We still are working on the vocabulary to describe different feelings.

Best of luck :)

I could tell my daugher wan't feeling good at the end of one of our Christmas dinners. You could tell from her face. We were trying to leave but it was taking a long time to get out of the door. We get outside and she burst out crying. " I couldn't hold it in any longer" she said. I felt terrible and let her know that if her head hurt that she only need to tell me. We could leave at anyttime...or do something quieter. Ughh..little miss tough. At 5 you shouldn't feel like you have to suck it up and bear though it...

Weebleviii said:

Kids have a wonderful innocence about them. They are brave while we are terrified for them. It is funny how they are comforting us through all the hard stuff. I remember when my youngest has brain tumor surgery, I was holding back the tears and panic. He looked at me and said " I'll be fine mom." It was a good thing the staff wheeled him into surgery at that time because I lost the pool of tears! Bless you and your family.

-M

Great post! This is so familiar. Explaining this stuff to a small child makes you realize how much we are asking of them. At such a young age, they are being asked learn and understand anatomy, physiology, and basic Medical Terminology. They seem to handle so well, sometimes better than us!