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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Monday, October 29, 2012

Neurology appointment

Lauren had her EEG and neurology appointment today. The EEG was normal and there was no seizure activity! YAY! I thought that would be the outcome but it's always good to hear it from the professionals.

Then we had Lauren's neurology appointment....The pediatric neurologist we saw was a complete jerk. I really really REALLY want to use another word. Let me give you a rundown of the appointment.

Pediatric Neurologist: What made you bring her in?
Me: Well, she was having some weird movements and I know infantile spasms are more common in kids with Down syndrome.
PN: And how do you know that?
Me: Well, we know quite a bit about Down syndrome. We've known she would have Down syndrome since I was 18 weeks pregnant. I definitely had time to do my research.
PN: Oh, you knew about "it" before you had her? (Meaning Down syndrome) Well, you need to lay off the Google.
Me: (Speechless!)

PN: Is she doing [insert tons of milestones]?
Me: Nope, No, Not yet, Almost, etc... (you get the idea. This part sucks sometimes.)
PN: Oh, well those are 9 month milestones, she probably doesn't do any of those yet.
Me: Yeah, she's not 9 months old yet....

PN: (After spending literally less than 2 minutes with Lauren) So, has early intervention told you that she's like a five month old?
Me: Uh, no?
PN: Yeah, she's like a five month old
Me: Well, she's really like an 8 month old with Down syndrome

PN: So we video taped the EEG. I noticed that she moved around a lot.
Me: Yep! She's always on the go!
PN: Well we can't diagnose ADHD in babies, so we'll just say she's really active.

PN: My husband's cousin's uncle (or something equally ridiculous) has a child with Down syndrome. She's 22 now. She even went to school!
(Oh, really? Does she feed herself too? Please!)

PN: We don't need to make a return appointment, but feel free to make one if you want to.
Me: No thanks.


First of all, she never one time said Lauren's name. Second of all, who the hell are you to tell me to "lay off the Google"? How about I Google whatever the heck I feel like? And how about the fact that I read nursing articles at work about it? And telling me that my daughter is "like a five month old"? No, she isn't! She babbles, scoots, rolls over, holds her own bottle, is starting to sit up on her own. She's like Lauren, who happens to have to work a little bit harder to achieve the same goals as other babies.

And telling me that "We can't diagnose ADHD in babies, so we'll just say she's really active." Shut the frong door! That's not a joke. It's not a diagnosis to just toss around. She acted so shocked that Lauren could possibly be an active baby. What, just because she has Down syndrome? Should she just lay there, slack jawed and expressionless? Not smiling? Not moving around?

The appointment started off on a sour note because the patient questionnaire made me check the "mental retardation" box. It's so hard for me to look at Lauren and think that's she's "mentally retarded". She's not "retarded". I absolutely loathe that word. It's not that I'm in denial about her cognition, but come on! Lets do away with the archaic terms, shall we? She's a baby! Is there a magic crystal ball that allows her to see into the cognitive skills in every child's future? I doubt it.

So yeah, I'm pissed. I think that doctor needs some serious sensitivity training. For the first time I was extremely disappointed in the University of Michigan Hospital system. I've been in a terrible mood all day because of it.

Lauren and I had a long chat on the way home. I made sure to tell her that she is NOT like a five month old. She's like an 8 month old who has to work a little harder. She is amazing. We are proud of her, so incredibly proud. And just because somebody is an adult with some extra letters after their name does not mean their opinion matters to us.


  1. gah!

    We have had good luck with both of our neurologists, with bedside manner, but neurosurgeons. that's a whole other ball game!

    I'm pretty peed off for you!

    I think google irks a lot of doctors because we tend to over google and worry more, etc. But google is also very helpful and informative.

    And the MR box. When I found out I was pregnant with M I had my OB records from P pulled for when we moved to VA, and at my initial visit with M, the nurse (whome I didn't like) had checked an MR box AND written it in huge letters on the chart. I remember how mad and upset I was, and even H got upset about that.

    FWIW Lauren is doing stuff both P & M didn't do until they were over a year.

    GO LAUREN!!!

  2. There is steam coming from my ears reading this!!! I probably would have lost it on her - its actually funny until I got to the point where you said "she" I was assuming it was a man. Guess I need to stop assuming "jerk doctor" = male because really women doctors can be just as dense. But of course the excellent news is that you don't need a pediatric neurologist - Yeah!

  3. I'm so angry FOR you! My daughter did not hold her own bottle till she was nearly 1 and she does have Down syndrome. Sounds to me like Lauren is developing at a perfectly acceptable pace! I think you should write a letter to the hospital board or something. Explain that you're a nurse and are horrified as a nurse and a parent. This Dr should not get away with this. Bad bedside manner is one thing, but he is completely ignorant about babies with DS.