When Your Healthcare Provider is No Help

Have you ever had one of those experiences, one of those where you, as an adult, find yourself being reduced to a child-size version of yourself?  I’m guessing that is the kind of thing that happens to everybody, but hopefully it doesn’t happen all the time.  I had one of those experiences last week Friday.

Courtesy of The Literal Mom (www.literalmom.com)

Liam was diagnosed about three weeks ago with eosinophilic esophagitis.  I’ve already written about what a big change this is for us and how overwhelming it all is.  The thing I  forgot to mention is that Liam is doing much, much worse since they changed his medicine.  The GI doctor told us to quit his PPI medications cold turkey.  I’ve heard many times that you are supposed to wean off those meds, and that quitting suddenly can cause acid rebound, but the nurse practitioner told me that was bunk and that my child would be just fine without it.  She just dismissed my concern out of hand.  And she was wrong.

Three weeks after changing everything, my child was sleeping two hours less at night, having a difficult time going to sleep and staying asleep, waking up crying, in pain, needing bottles or OTC antacids to go back to sleep, and showing symptoms of Sandifers Syndrome.  These are pretty clear reflux-like symptoms and they were not getting better with time, Zantac and Maalox.  So I took him back to the GI practice.

Well, that was a mistake!  I could only get in to see the nurse practitioner again, and she treated me as though I was dumping on her for telling her that their treatment wasn’t working.  She just refused to listen to anything I said, tried to suggest the problem was behavioral (don’t ever do that, by the way), reminded me that the pH probe was negative for acid reflux and implied that I was trying to overmedicate my child.  I tried talking to her about possible symptoms of the EoE, and told her that Liam was hardly willing to eat anything now, even things that he used to eat well.  Nothing.  She told me that EoE doesn’t cause pain or reflux-like symptoms and wouldn’t be helped by giving him his PPI again, even though things went to heck after we withdrew it.  She demonstrated a shocking lack of knowledge about a problem she claimed to be able to treat and I left without getting any hope of relief.  I drove two hours and paid $40.00 for her to give me no help at all.

Well, you could say I was upset.  At first, I felt defeated.  What was I going to do?  My GI wouldn’t treat my child’s GI problem, and Pediatric GI’s are actually quite rare.  There is a nationwide shortage of them.  I’d already gone through the ones in town here, and the one I saw Friday was the only one in the next big city over.  Would my regular Pediatrician be willing to step up and help us after the specialist blew us off?  Or would they assume that I was a crazy lady?

Obviously, you already know that the internet is a miraculous invention.  It is truly a Godsend to folks with rare health problems.  I asked for and received three recommendations for Pediatric GI practices in the tri-state region.  The only downside to the one in our state is it’s a four-hour drive.  I was also given an online resource with lots of useful up-to-date information about current research in diagnosis and treatment, so that if my Pediatrician did think I was crazy to be asking for a PPI, I would be able to tell them where to look to see that this was a legitimate treatment.

And finally, when I had a plan and knew that I would get the care my son needed and I didn’t actually need that GI nurse for anything,  then  I was filled with blinding rage.  I haven’t felt so angry in years.  I couldn’t sleep because Liam felt bad at night and needed lots of care from me, but even when he did sleep, I couldn’t because I was so angry. I was shaking, muttering under my breath.   I couldn’t drop enough f-bombs.  This woman didn’t just treat ME badly, she ensured that my child would continue to feel bad through the weekend.  She refused to take his symptoms seriously at least in part because he is too small to describe his symptoms.  And firing my GI practice will not change one damn thing for them.  Their services are in such high demand that they likely have five new patients coming for every one who fires them in disgust.  They have no real incentive to do a good job.

And really, how could anyone treat me like a child who doesn’t know anything?  I’m in my mid-thirties, I’ve been parenting for two and a half years, been a responsible adult, jobholder, homeowner, car-oil-changer, for quite a bit longer than that.  Sure she’s older than me and a nurse but who thinks they are entitled to give someone crap when they are  just asking them, politely, to do their job?  And how is it that I couldn’t put it in perspective, couldn’t let it go, couldn’t stop chewing on it?  I used to be a rageaholic.  These kinds of feelings are not new to me at all.  But I haven’t dealt with anything like that since I grew up.  I felt like the child I used to be.

And what happened with my Pediatrician?  I didn’t see the regular one, but I talked to one of her partners.  He didn’t treat me like I was a crazy lady.  I didn’t have to refer him to the APFED website.  He knew enough about EoE that he didn’t question my request for the drugs.  He even referred us for feeding therapy.   Tell me about your experiences with this.  I KNOW I am not the only person who’s been blown off by their healthcare provider when they really needed them!

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