Mar 10, 2009

Pediatricians + Autism = Clueless

Throughout the last 10 years the kids have had the same doctor. I like him. He's good at what he does. But he is really basic at what he does. I am SO ready for a change. Our DAN doctor is two and a half hours away and doesn't accept Medicaid, so we can't just get up and go at the drop of a hat to see him. I feel like after ten years we should have a better relationship with our local pediatrician than we have now. He knows all of our kids and their challenges. But still, there seems to be a lack of understanding or trust in us as parents. I think he is just "doing" his job and doesn't have the interest or compassion anymore-that hopefully-he once had. He never asks how Ryder is doing, even after three visits of Ryder screaming in pain the month before. He doesn't call to see how he is doing; nothing. I feel like he is not listening to me. I have written a letter to him, but have yet to send it. How do you get doctors to listen to parents? I've only had one pediatrician actually listen to me.

When Mercedes was a baby, she was chronically sick with unexplained high fevers. To make a long story short, I knew something was wrong: that it wasn't just stomach pains, headaches, toothaches, etc. I took her to at least six different doctors and finally, to her first female pediatrician. And this doctor actually asked me; what I thought was wrong. I told her I thought she was having UTI's. She was tested, and lo and behold, the tests came back with positive results. Her WBC count was over 30,000. She was a very sick little girl. She was diagnosed with Bilateral Kidney Reflux and at age two and a half she underwent surgery to repair it. It worked. She had only one infection after that, and now we are free and clear, no pun intended.

I've often wondered about this trial that we went through. She was our firstborn, and we were pretty clueless about a lot of things. I thing the Lord prepares us little by little, step by step, precept upon precept, for further trials and adversity, because that in the end, is what molds us and refines us.


  1. IMO there isn't much you can do to MAKE any of these people listen. Sometimes you shop around and deal with the best you can get on your insurance. Our current doctor does nothing but say the kids look fine, mostly, but then again at least he's not nosing into my parenting and vaccination choices like so many of the other physicians have done in the past!!

  2. It sure sounds like you could find a better match for you and your children. I didn't realize there were pediatricians out there that listened well to the parent or called and follow-up on serious issues until my current pediatrician. I wish you lived close enough to use her. We've had her for 4 years and I it has been amazing! She was there for Talia's preemie start, Cooper's passing out episodes and helped us negotiate all the neurologist and cardiology visits. I found her by neighbor recommendation. Three of us in our neighborhood go to her. Maybe ask around?

  3. The world of medicine is very predictable when it comes to dealing with special needs I'm afraid. With thirty years of experience as mom/caregiver for our daughter, and associating with hundreds of like-families from literally around the globe, and as a teacher of professional care providers, I can tell you that the experience you're describing with your pediatrician is sadly common, if not typical.

    Moms are treated as if they are unrealistic and have to be "protected" from the truth too often. The reality is Mothers are the Ultimate Realists and know better than anyone when something is wrong, and usually have a good idea WHAT.

    Ashley was our firstborn too. I was clueless, as you say, but the Holy Ghost was my ally and sent me promptings and even dreams that led us to the answers.


  4. I think I would shop around. We are very blessed in that we have great doctors who listen to us and defer to us in pretty much everything. Maybe a you would be happier with a new one...

  5. Good luck with this! These kind of decisions stress me out...and they are hard!

  6. I recently found your blog and just had to comment on this post.

    We lived in the Houston area from the time our Autistic son was born in 2004 until he was a little over 2 in 2006. We then were transferred to Amarillo, TX with my dh job at the time.

    We have been so lucky here. Our Peditirican absolutely ROCKS!!! She knows our whole family, if she sees us out in town, she recognizes us and stops to visit....and our son is also asthmatic and our Pulmonologist is just as awesome as our Peditrician. We were so lucky to be transferred here so Gregory would have such good care.

    Hope you find the care for your kids you are happy with.

  7. I can totally relate! I say, shop around and find someone you really like. I moved 6 months ago and so far can't find a pediatrician that listens to me or respects me. I've seen 4 different peds and they all seem to have a different idea about their role than I do. I haven't had trouble with this in the other places I've lived and it is driving me crazy. I have to say, the best peds at listening to me have almost all been women. I think I'll start looking in neighboring is worth it to me to drive a half hour. Good luck! Thanks for your blogging. I'm new the autism spectrum parent thing.




Ernie and Oscar learn they like different things-great for kids on the Spectrum!