Monday, August 16, 2010

Tests and Screenings

When I take Finn to see our pediatrician for regular checkups, the doctor goes down a checklist of things that need to be addressed for children with Down syndrome. Where he got this checklist, I don't know. He's a wonderful doctor. There are so many things I love about him; he's warm and personable, he always takes the time to sit down and make me feel as though our family matters to him, in the thirteen + years he's been our pediatrician, he's never once rushed though an appointment with us, and although he and I don't always see eye to eye on every issue, like vaccines and infant sleep issues, he always listens to my concerns and respects my feelings concerning my kids.

He's not an expert about Down syndrome, though. I think he said that in all the years he's practiced, he's only had two or three other patients with Ds. Which is fine. So he uses this checklist.

So at Finn's two-year well check a couple of weeks ago, he's going down the checklist. And he mentions that it's time for Finn to have his hearing and vision checked again. I told him flat out that I'm not taking Finn in for the booth hearing test again - it's a waste of time because the results are always ambiguous, they'll just tell me that Finn needs to have a sedated ABR which I am NOT going to do, and I have no reason to think that Finn's hearing is impaired. He agreed with me, but he did say that maybe we should at least go back to the ENT to make sure Finn's tubes are still in place (the pediatrician couldn't tell). I said okay. He also mentioned that Finn should go back to the opthamologist to have his vision checked again.

We got the forms in the mail a few days ago from our insurance carrier approving the referrals to the ENT and to the opthamologist. A little while ago I picked up the phone to call both of those doctors and schedule appointments for Finn, as well as the cardiologist to schedule the sedated echo which our insurance company also approved.

But then I put the phone down without dialing.

Sometimes I get tired of all the specialists, of all the tests and screenings Finn is "supposed" to be subjected to. And it's not even as though he's got a list of doctors a mile long like some kids with Ds do - Finn's a very healthy little boy. And I guess that's the thing: he IS healthy. So why does he have to undergo all these screenings? I certainly don't take any of my other kids to any doctors unless they present symptoms of a problem.

I realize that along with Down syndrome comes a greater risk of a lot of things, and a lot of those things are silent - there may not be any outward signs of certain conditions. I'm fine with doing periodic blood draws to check his thyroid function. I realize that he actually was born with a hole in his heart and that it's necessary to monitor that. I'm even okay with having his vision checked once in a while. Do I really need to take him to the ENT (which requires taking up an entire morning driving across town, waiting in a packed waiting room for a really long time, and paying a $20 co-pay for the privilege of all of this) just to see if his tubes are still in? I know they'll fall out eventually, but if he's not getting ear infections or showing any of the other issues he was having prior to getting tubes, then what's the point of checking?

I know there are parents out there who feel strongly about subjecting their kids to every screening available. I'm sure it goes along with wanting to do what's best for our kids to ensure their good health, but over time I've become less and less enamored of all the special medical treatment our kids are supposed to be subjected to just because they have Ds. Having Ds isn't a disease or an illness.

Anyway, I didn't mean for this to become another post I give from atop my soapbox. Really, I am interested in anyone's thoughts on NOT taking Finn back to the ENT until/unless I start seeing clear indications that his tubes are out and he needs new ones.


Sweet Pea's Mommy said...

I'm curious too! The tubes are a bit annoying and I'd love her to not have them, but I don't want to have her getting the recurrent ear infections again like she was.

Anyway, I completely understand how you feel and really wish Sweet Pea didn't have nearly as many specialists in her phone book as she does.

Congrats on a good 2 yr check up though!

heather said...

I think he's fine to not go back to the ENT. But the thing I would worry about is that your pedi saying he can't tell if the tubes are in or not. That means he can't see his eardrums which I think should always be checked at well visits. Morgan's pediatrician could always see her tubes and let me know when one fell out. I decided to not do tubes again unless she started having recurring ear infections (which she hasn't). I got sick of all of the appts. too and actually skipped her cardiologist one year because it's always the same thing. Any new symptoms? Does she act more tired? Ok everything looks great. Let's see her back in a year. I figure I'll take her in if she does start to act more tired or has new symptoms. I do take her to the ophthamologist every year because I don't want her vision and reading to suffer and not know she needs glasses. She is borderline on needing them.

Stephanie said...

I know exactly what you're talking about. In our family we have nine, yes, nine different specialists we see. You prob. know that my oldest daughter also has some health issues and it seems we are always running back and forth to a doctor's appointment. Usually they just tell us come back in such and such time and collect their money. As of now our medical bills have nearly become unmanagable and I've finally started to pick and choose what's really important. Oncologists and neurologist top the list. ENT and optomologists? Well I'm sure I'm sure we're quite behind on our visits.

Chromosomally Enhanced said...

this is it!! you said it PERFECT!! on one hand we are to look at our kiddos as "normal" and on the other hand they have to go to one doctor after another..this is not a soap is a valid point...if our kiddos are more the same then treat our kiddos the same...I know Maddie can hear me...I also know she has selective hearing already!! I knew she could see the TV and when we walked in the room...but I also did not think much about her eyes...until I noticed she would not finger food or splash food...because she could not see it! so I think if you feel good about Finn...then go with it! Mama ALWAYS knows best...smiles

Kara said...

I hate the ENT too. My child has/had tubes. When they fall out, it can be a bit dramatic, bleeding out of the ear, gunk coming out, etc. We still have to see the lovely doctor every six months, "just to see what's going on." She's 3, not DS, and we're now talking about getting her tonsils and adenoids out, pending a sleep study that I don't want to do...she's a heavy snorer, and they want to see it for themselves.

Tara said...

Well, I'm the slacker who hasn't even taken Eon to get his eyes checked. He tracks beautifully, can spot a sibling across a crowded room, can recognize the bug in the page of a book, etc. I just haven't felt it necessary, yet. I will take him when he turns two (probably). I'm just over the myriad of visits our kids "should" go to just because they have Ds. I'm very tuned into all my children and am quick to take them the second I see a potential problem, but I hate wasting time!

Brandie said...

I've come to the same conclusion. I decide which drs and tests to utilize based on her individual needs. Just like I would for my other kids. It's all about making informed choices. And I'm sure from our kids point of view, the less poking and prodding the better!