Home > Uncategorized > When Doctors Can’t Help

When Doctors Can’t Help

I’ve written a lot about my daughter’s fight against post-infectious gastroparesis.  I’ve written criticisms of doctors.  (And a lot of other people, too, but that’s irrelevant at the moment.)  You may be tired of hearing it.  If so, this is not the post for you.

Look, I’ve done a lot of research about gastroparesis.  I know that it is not well understood (yet) by the medical community.  I understand that it’s often misdiagnosed.  I realize that it’s nearly impossible to treat.  What I can’t stomach (ha. no pun intended) is the feeling that our doctor conveyed that she sees this often and could offer us support to get through it.

zazzle.ca

zazzle.ca

I give her credit for recognizing it.  That’s about all the credit I’m willing to give.  I repeatedly called the office as things got worse, and, without fail, I felt that everyone thought I was exaggerating.  I pushed and I questioned and I damn near begged for help.  Granted, there wasn’t much they could do.  When push came to shove and my child was on the verge of literal starvation, they did what they could.  I give them credit for that, I guess.

Then, then!  Six weeks after the hospital visit, we returned for our follow-up visit.  The doctor decided that we could try to start introducing foods.  We met with a dietician to formulate a plan.  It sounded reasonable, and the diet closely mirrored all my research.  We were told, at that point, that if something made her sick, no big deal.  Just don’t eat that thing anymore.

Bullshit, bullshit, bullshit.  Here’s what they should have told us.  “We don’t know what to tell you.  Everyone is different.  You’re in for a long, tough road and we’re sorry, but we can’t help you.”  That, at least, I could respect.  I wouldn’t like it, but at least it’s honest.  The diet they gave us?  No dice.  Most of it makes her throw up.  You know what she can eat?  Not liquids and applesauce and mashed potatoes.  She can eat Easy Mac.  It’s not low-fat, it’s not especially squishy, it doesn’t make a whole lot of sense, but it’s what she can tolerate.  And what happens if she eats something that she can’t tolerate?  A minimum of three days of vomiting and a complete inability to keep any food down.  Then we start over with Easy Mac.

We had another follow-up appointment last week.  I canceled it.  I have no intention of going back.  The doctors don’t have anything to offer us.  We are on our own and I could have saved myself a whole lot of frustration if they had just told me that from the beginning.  We’re very, very slowly getting her back to normal.  She’s getting through the setbacks and picking herself up and trying again.  That’s all we can do.  Although I find it hard to believe that modern medicine can’t do anything about it, that is certainly the case.  I just wish they would tell you that.  If I weren’t a rebellious, skeptical kind of mom, I would have never given her the one food that she can dependably eat, because it wasn’t on the list.

There is a part of me that knows I’m not being fair to the medical community.  I am sure that there are a lot of doctors out there who might have handled this differently.  I wish I could meet some of them.  No one likes it when a doctor can’t help you, but it’s much, much worse when you’re led to believe that they can help.  Then they don’t.

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  1. January 21, 2013 at 2:31 pm

    I’m sorry this is still so difficult for you all. I have no wisdom to share. I’m sorry. But you and your daughter and family have my sympathy. By the way, you are a rock star mom.

    • January 21, 2013 at 2:36 pm

      Thank you so very much. I’m not feeling very rock star these days. She is getting better, though, little by little. She’s totally a rock star kid, that’s for sure.

      • January 21, 2013 at 5:20 pm

        Rock S.T.A.R. I bet if you ask her she would agree. Just a thought though, if she does well with Easy Mac, are there other pasta’s she might try? With different cheesiness? Or macaroni as base with other pasta type toppings? I wish you luck. I can’t imagine the suffering you parents are going through not being able to make it all better right NOW.

      • January 21, 2013 at 5:56 pm

        Great minds…haha! Yes, she is having some success with pasta of all kinds, we just have to be very careful about sauces. We’ve managed to put canned tuna in mac & cheese for her (an all time fave even before she got sick), so we’re getting a little protein in, too. Bless her heart, she’s never going to eat pasta again in her life. 🙂

      • January 22, 2013 at 5:47 am

        Good luck Shel. I appreciate our great minds. 😉

        Canned chicken (like the tuna)?

        Bless her heart is right, and in the process bless her stomach! I look forward to the updates.

        Couscous?

      • January 22, 2013 at 6:13 pm

        Couscous! BRILLIANT!!

      • January 22, 2013 at 8:17 pm

        I try. 🙂

  2. January 22, 2013 at 9:12 am

    This is the first time I’ve heard of this. It sounds terrible! I am so sorry your daughter has to fight this. I’m sending many good thoughts your way.

    • January 22, 2013 at 6:14 pm

      Thank you so much

  3. January 25, 2013 at 11:42 am

    That sounds absolutely awful. I am so sorry that you and your daughter have to go through this. HUge hugs!
    (also my kids are two years apart and my oldest wont wear a coat. I feel your pain)

    • January 27, 2013 at 7:14 am

      Thank you…it IS absolutely awful, but we’re getting through it. And seriously, what do our children have against warmth??

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