Wednesday, June 25, 2014

To Change or Not to Change Doctors: Pondering Mae's Latest Appointment

Yesterday Mae had her well child checkup and I geared up for it, feeling as though I was getting ready to go into a battle.  We've been to our doctor's office a lot lately, weekly more or less, and I knew what the challenges would be.  It would start in the waiting room.  We'd walk in to a room full of quietly sitting children and Mae would be instantly overstimulated.  She's see the chairs and the mural of fish on the walls (have I mentioned she loves fish?) and likely start bouncing off the walls while I attempted to hang on to her, while assuring the front desk that our insurance and address and phone number had not in fact changed in the last three weeks since we last saw them.

After a solid half hour in the waiting room we'd be escorted back.  They'd tell Mae to take of her shoes to be weighed, which would result in hysterical tears and screaming and thrashing for as long as the shoes were off of her feet.  There aren't a lot of things that she freaks out about (or that can instantly cause a complete meltdown), but taking off her shoes is at the tippy top of the list.  After struggling to get her weight and height I'd put her shoes back on (the screaming would stop, but the crying would likely continue) and carry her back to the exam room to wait another forty five minutes for the doctor.

I'll admit, after last years well check, where they pretty much focused on the fact that my kids were "nearing" the range of being "overweight" and peppered me with questions about their diet, while ignoring the fact that you can actually see the muscles in Mae's stomach because she's so strong, I was not really looking forward to this years appointment... especially since our favorite resident is moving on to her own practice this summer and moving out of state.

The actual appointment was more of a mixed bag.  We got there and I clung to Mae's hand while telling the receptionist quickly that nothing had changed.  She handed me six pages of paper work to fill out instead and looked at me like I was slightly insane when I asked if I could give it to the nurse in the room, because it was really hard to get it done in the waiting room.  Finally I added, "she's autistic and being in this waiting room tends to be really, really hard for us" which was fairly evident by the squealing and thrashing going on on the other end of my arm, and she nodded and had me promise to complete it before we left.

We made it to a quiet corner and I pulled out crayons and a coloring book and a pencil (the pencil was the bribe for the appointment because she loves pencils but doesn't usually get to have them outside of therapy because way too many of our books are filled with pencil drawings) and held her on my laps while sitting on the ground, while attempting to get started on the forms with my other hand.  It was a shorter wait this time, with only three incidents of attempted climbing of the walls, and when the nurse came out I began to assure Mae that while we needed to take her shoes off to get weighed, we'd put them back on as soon as we were done.

Thankfully, this nurse remembered us and said "you know what, those shoes are so light I don't think they'll make a difference!  She can keep them on!"  Less fortunately, Mae was already anticipating what was coming and the tears had started (although we did avoid a complete meltdown).  After weighing in at 39 lbs and measuring 41 inches we headed back to the room where we got a tearful under arm temperature and sat down to wait for the doctor.

I let her have the water on a trickle in the sink and she spent a solid ten minutes washing her Dora doll while letting me know that the coloring books I'd brought were so ten minutes ago.  We battled over whether the lights had to be turned on (they do) and whether or not she could play with the tools the doctors use to check ears and eyes (no) and also the doctor's little spinning seat that she was so attracted to (also no) and I twirled her around in my arms and sang songs and let her have the water on a trickle because for some reason the sound calmed her and she'd freak out whenever I tried to turn it off.

When she tried to climb just about every surface in the room I pointed to a sign on the wall that said "no climbing" and said "look, they even have a sign" and she would stop and smile to herself and I'd have a solid 10 climb free seconds before she made her next attempt.

The doctor came in and I couldn't help but be disappointed because I was secretly hoping that her regular doctor would still be around, but it seems we've been thrown back into the "whatever resident is there" (or basically a new doctor each time) mix.  It can be hit and miss.

The doctor of the day came in and was friendly.  I had my packets and folders of test results and her various programs with me just in case he needed them.  We went over the developmental milestones she was missing (always lovely) and I said "yes, the tests have generally come back putting her at around 18 months" and then found myself explaining what ABA was (I wasn't totally surprised) and what OT is (okay, I'll admit, I started to lose some faith in him), and then found myself being mildly reprimanded because I can't "let her get away with things."  The "things" he was thinking of, he explained, was "wasting water," (for my readers from dryer areas, we aren't in any sort of drought here at the moment, after a long intense six month winter it's still raining basically every single day... inches and inches of water that floods the street in front of our house).

I didn't point out that having a trickle of water on had saved us from a screaming meltdown for the forty minutes we'd waited for him to wander in, and that I'd spent that forty minutes enforcing every other rule under the sun.  There are battles that I pick and choose.  At home that pretty much comes down to she can wear whatever she wants.  If she wants to wear her bathing suit of tutu around the house and they're clean, I let her.  At the doctor's office, the stressful, meltdown prone doctor's office, that means I let her put the water on a trickle and play in it (there was no mess at all, she just ran her doll under the little bit of water coming out of the sink).

Seventy minutes after our scheduled appointment time we were on our way... but I'll admit, I think I need to find a place that's a little more consistent, at least for Mae's appointments.  The not knowing what OT is was a little disturbing to me when speaking with a pediatrician...  The water comment annoyed me... but not knowing pretty basic information that's pretty important to her treatment has me leaning towards going someplace else.


  1. I definitely would have been annoyed too. He really should know what OT is. That seems rather basic. I don't blame you for wanting to look elsewhere. ((HUG))

  2. You are lucky that you have the option to change doctors. Up here we have a clinic with 3 doctors and some RNPs. That's it. I really want to change but can't. I once questioned them about Ella's breathing and they said "of course she has asthma, you have it". They didn't even look at her let alone send her for testing!!!

    When the doctor gave you grief about the water it's too bad you didn't have a comeback about their total lack of respect for YOUR valuable time. I couldn't imagine trying to keep Ella entertained waiting that long for a regular doctor's appointment. I agree, time for a new doctor. If he doesn't know the basics of Mae's life, then how can he treat her properly.

    Oh yeah, if they give you grief about the girls' weight, tell them what my husband told me to tell them (because Ella was too light and too tall). 'There has to be children on both ends of the scale to make an average!' And then I'd tell them to get their heads out of their file/computer and actually LOOK at the child before passing judgement.

    Hope you can find a good doctor.

  3. It sounds like your office is more of a "clinic" rather than a practice. You need to find an experienced solo practitioner, or 2-doctor team, that specializes in developmentally delayed kids. You need a situation where the same doctor is seeing your child every single time, and there is no "turnover" of doctors.

    I think they are called "developmental pediatricians."

    My friends whose kids have various special needs say that having one is a MUST.

    And that's not to say you will never wait for your appointment or hear things you don't like, but at least that doctor will understand your kid's issues and have good insight and resources for her particular needs. Plus, so much gets overlooked in the "clinic" scenario rather than when the practice is someone's private business.

  4. I left my pediatrician when she started overbooking and the waiting room became crowded and we had to often wait for an hour. (I'm sure you can understand that bad combo) After screaming through the peds visits; she went quite happily to the new GP. (moderately busy waiting room but not a problem) At age 4; I think she tested at about 20 months. I just called her to check on her as she has a speech appt. (conversational skills). She was like "yeah I'm at the Starbucks and I'm going to be leaving now to go the the appt." (it's up the street from the Starbucks) She takes public transit there and although I may lose my mind because every new route is like learning it from scratch; she hasn't got lost yet! LOL (she's 19 now and a very sweet person) Just another peek into a possible future where you aren't spending much/any time in waiting rooms with a screaming child. (keeping you in my prayers)

  5. I would change doctors.

  6. Yes, you most certainly should switch doctors and consider making a complaint. A pediatrician shouldn't talk down to parents, especially not parents of a child with special needs. You and Mae deserve MUCH better!

  7. I'm so sorry your favorite doctor is leaving. My neurologist is moving to a town over an hour away and I am going to visit him at his new place because I like him and I don't want to have to deal with trying to find another one.

    If you do decide to find another doctor, I hope the process is smooth and easy for you.

    And I'm sure you've tried this before, but I always try to get the first morning appointment or the first appointment right after their lunch break because there is less time spent waiting. However, with all of Mae's other appointments and therapies you probably have to take what you can get. :(

  8. Sorry, it's so hard when the medical profession doesn't seem very "professional." It's so obvious this doctor has no understanding or appreciation of what "autistic" means and implies.
    Back in the olden days it was possible to have a family doctor, one you kept for pretty much your whole life. In my life I have known all the way to 3 doctors, my current doctor having worked with my second doctor in his practice before he retired. You can't imagine what it is like when a doctor knows you for many years, and also has cared for other members of your family during that time. They get an understanding of your life, and all the health things that everyone has, and it's amazing how much better care you get.
    I know that is all changing now, but if at all possible, see if you can find this kind of practice in the future, so you don't get just a random doctor but someone who gets to know you and your family (maybe after Paul gets a job and you settle somewhere).
    You want someone who gets autism and the needs of a autistic child. You shouldn't have to be the doctor's educator.
    God bless. ~ Bonnie

  9. The more drs in one practice, the less liability to go around. It'sa pretty saeet deal for the drs, but their patients suffer tremendously, as does the reputation of the entire medical profession.

    Imagine the legal repercussions, when you have to try to sort out actual liability for malpractice, when your client has been seen by no less than 30 different drs in 2 months, received multiple diagnoses and walks away with 9,000 pages of medical records. Talk about a nightmare...a nightmare the drs can hide behind because there'll all part of the same practice and the "Blank Physicians Group" covers them all.

    Sorry for the cynicism. It just makes me cringe! TB

  10. I am so glad we moved and therefore got to change doctors. We had been going to pediatricians who were absolutely terrible. A misdiagnosis sending us to a specialist over an hour away. Almost missing another window for surgery for something else, and making us do a food diary, for our obviously enormous chubby child because he didn't gain weight in a totally linear manner. And then couldn't interpret the results because we were still breastfeeding.

    We are much happier now. Yes, I have to actively bring up concerns, but I don't have prying annoying doctors pushing their agendas on me.

  11. Heck yes, switch doctors! And don't be afraid to assert yourself, or, have battles with the doctor to avoid them with Mae, if you want. I never take Abigail's braces and shoes off for height and weight checks - I just tell the nurse, "Oh, it's a pain to take them off, let's just leave them on" and start walking towards the scale. Honestly, I leave her shoes on everywhere no matter what the standard procedure simply because it's a pain to take them on and off. I either act like what I'm doing is totally fine (in Drs offices) or I play stupid (usually in public, like at bounces houses, etc). So far no one has ever fought me on it. If they fight you, just break out all the technical words. Prep a sentence that includes the word Autism, the acronym SPD (acronyms are scary), and "intense emotional distress." Break it out when some know-it-all with an attitude tries to get you to do something with Mae.

    And don't feel bad about water trickling! I seriously bring my iPod and a portable speaker and play it on low in the exam room when we're waiting for the doctor. When people give me attitude, I laugh at them like what they said is just plain silly. Seriously, it totally knocks people off base! Plus you can get away with a lot when you walk around (or sit around with water on) like you own the place.

    Good luck and don't beat yourself up over a frustrating appointment, just use it as a learning opportunity for all the other 1,000,000 times you are going to encounter a jerk with an attitude.

  12. You should ask Mae's therapists if they have any recommendations for pediatricians who are "autism-friendly."

  13. Might as well check out your options. We switched from a pediatrician to a family practitioner. They have a lot of older patients, so I feel my kids get a little more special attention. And the waiting room is quieter. But mostly, I like the doctor better, he's just a better fit for our family. I felt a little guilty switching, but I don't dread doctor appointments anymore, so I feel it was worth it!


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