Arrrgggghh! Good news in a bad way

Discussion in 'General Parenting' started by TerryJ2, Jun 27, 2008.

  1. TerryJ2

    TerryJ2 Well-Known Member

    I took difficult child to the gasteroenterologist today for his Celiac's followup. I did not have a chance to tell the nurse that I wanted to talk to her or the dr alone--we were pretty much rushed in (you know how it goes with-specialists) and so the dr came in and immediately said exactly what I DIDN'T want him to say: "There was more than one blood test done. It was only the old test that showed Celiac Disease (I know, several of you warned me about that). The other tests are more specific and there is no sign of it. So he doesn't have Celiac Disease."
    Arrrgghghh! difficult child sat there, ears as big as Dumbo, and I knew the 1st words out of his mouth would be, "I can eat wheat now!"
    Yes, that's exactly what he said on the way out and I said NO.
    True to form, this specialist had tunnel vision, almost poo-pooing a wheat allergy altogether. It never occurred to me to bring the old paperwork from our allergy testing 2 yrs ago, and the allergist--the only one in the area who believed there was a connection between behavior and allergies--moved to PA. I temporarily forgot his name, in my panic. I wasn't sure who I should shoot 1st--myself, the dr, or difficult child.
    The Gastro dr hounded me for specifics on WHY we even thought to test for Celiac's and I said the allergist not only told us difficult child was allergic to wheat, wheat was slowly phased out and his symptoms improved, until we got the blood test back, and then we went cold turkey, at which point difficult child showed marked improvement to his skin, his bowel movements and his temperament.
    difficult child of course argued, and said, "No, the rash on my back is from tree branches." Say what? I wanted to throttle him. He had no clue where it had come from. He just wanted to argue.

    He also argued about his lactose intolerance and milk allergy (he's got both) and argued about not having ANY bowel issues, never mind that he couldn't remember how many times he had to go to the bathroom in the past 24 hrs or what his normal habits were, refused to admit he'd had any headaches or stomachaches until I prodded him with-a reminder he'd missed 2 days of school right b4 summer break, refused to admit he wet the bed, and refused to talk about anything except to say "No."

    The dr. got a bit exasperated and said, "Look, it's okay to talk about this stuff. I'm a poop doctor. That's what I do--just study intestines and stomach and poop and no one really likes to talk about it but it's okay to talk about it."

    (I wonder if his lic. plate reads POOPDR like the urologist down the street, whose plate says, WEEWEMD.) :tongue: ;)

    Finally, the dr shrugged his shoulders, looked at me and said, "So, what made you think it was Celiac Disease? I'm still not hearing anything that leads me in that direction."

    I sat there fuming for about 15 sec. and finally said, "We've got the plumber on speed-dial and have had the toilets unplugged twice a mo for the last 6 mo."

    The dr's eyes brightened and he said, "Now THAT's something I can work with," and he started scribbling notes all over the place.

    Aaargh! :mad:

    On top of it, difficult child pulled the same stunt he pulled for his camp/school physical, and wouldn't let the dr do an anal exam--nothing invasive, just a quick look see with-a light, not even any touching. difficult child spazzed out and asked the dr to leave the rm so we could talk. I wanted to strangle him but thought I'd get more mileage if I hugged him. He started to cry and said, "Please, no!" I asked him "why" a million diff ways but he wouldn't tell me.

    So the dr came back in (I was amazed he actually left the rm and stayed right by the door--I have to give him credit for that) and I told him we were at an impasse. He was at least as frustrated as I was.
    He just did a quick abdominal (colon area) palpation & ordered an Xray.
    Then he talked for several min. about encopresis, getting into a yrs-long habit of withholding and how you have to re-train yourself to go by just sitting there about 1/2 hr after ea meal, etc. He also said we can choose not to flush to toilet so I can study what's in there--no problem since difficult child doesn't flush anyway! and I'm used to looking at the dogs' stuff to see what they're been into.
    He also said that there was a lot of psychological overlay, (no, REALLY? :mad::whiteflag:) so I told him we were already seeing someone and he said that would be a good topic to bring up the next time.

    I called husband and ranted over the ph, and he nicely said, "I understand how frustrating it was, but look at it this way: you got good news, and while difficult child can't eat wheat, it's not a disease."
    Typing this helped calm me down. Going out for a margarita with-my friends for my birthday will help even more. ;)
  2. susiestar

    susiestar Roll With It

    I am sorry the specialist was so abrupt. I understand wanting to strangle them for THEIR lack of social skills and tunnel vision.

    husband has a good way to look at it. But remember, the tests are NADA against mom's instincts. Never can hold a candle to them.

    You may have to get husband to take him in order to get the anal exam. many guys are extremely embarassed, anxious, upset over these.

    Hugs and happy Birthday!
  3. Steely

    Steely Active Member

    How hard and difficult this must have been. doctors make me over the top mad anyway - so I would have found this whole thing unbelievably difficult.

    I can see how difficult child did not want to be "touched" - it is pretty traumatic having people do invasive things like that. It is hard enough for me to go to the gyno - let along have a doctor do that to me.

    So glad husband can be such grace under pressure.
    Hugs to difficult child - and you. Enjoy that margarita. Or two.
  4. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    I guess the bottom line here is that while he is not diagnosis'd with CD, his body cannot tolerate wheat products. I mean, you live with yoru son and you know how his body and behavior react to different stimuli.

    Sorry the doctor didn't have much time or manner. Although it does sound like he became a little more sensative towards the end. And listen, my difficult child would have to be sneaked up on in order to have an anal exam!

  5. Josie

    Josie Active Member

    I think it is good news that now he won't have that on his health records.

    Hopefully he will begin to see how much better he feels avoiding gluten and realize he does need to do the girlfriend diet.

    A lot of people on the gluten free diet believe the current tests for celiac disease are not very accurate. If they are positive, you have it but if they are negative, it doesn't necessarily rule it out. At least half of the people on the celiac board are not officially diagnosis'ed with it.

    It doesn't really matter what his test says because you have seen how he does without wheat.
  6. TerryJ2

    TerryJ2 Well-Known Member

    It doesn't really matter what his test says because you have seen how he does without wheat.

    I agree. That pretty much sums it up.

    We did buy Miralax but difficult child won't take it, so we'll try again next wk when he gets home from camp. I just don't think the nurse will be firm enough to stand there and make him drink it every day. Bad enough he's got to take his other medications.
    He's been very negative and anxious about going to camp. Didn't want to pack, didn't want me to pack. So I just started to pack for him and walked away. Sure enough, he followed me and pulled out some clothes that he liked better. He's all packed now. :)
    And asleep. :)
    I packed a bag with-rice pasta, Rice Chex cereal, 2 kinds of gluten free cookies, and rice milk. I hope the cook gives it to him. They've got a buffet (it's in a college dorm) and the food is awful.

    I can only keep my fingers crossed and let him and the counselers and nurse do their thing.
  7. ML

    ML Guest

    I guess you can join the rest of us who have: autistic like behaviors without having austism, and mood disorders without having bipolar, etc. etc. The good/great news is that you *know* what triggers these behaviors. Thanks to your hard work you know. I think you are handling this so well. Hugs, ML
  8. ML

    ML Guest

    PS the world is coming around. I went to Maggiano's restaurant this weekend and saw an option for gluten free pasta! It will be easier for him and for you as these expanded menus keep up with the demand. Someone on this board said something that I use all the time now: sugar is from the devil. White powder/bad! I know that gluten isn't sugar but for those who tend to have difficulties with carbs and the like, it's a comlex form of the stuff. My sister in law is on the diet by Elaine Gotchall (sp) and explained that when kids get that goofy behavior going on it's often from all the sugar fermenting in their guts and turning into a form of alcohol. If I think keeping difficult child away from sugar is hard now, just wait a few years. Not in any hurry :)
  9. Josie

    Josie Active Member

    You might find he doesn't need the Miralax as he adjusts to his new diet.
  10. TerryJ2

    TerryJ2 Well-Known Member

    :whiteflag::laugh:Thanks Michele and FairylyOdd.
    Yup, it's intuitively obvious that we won't need the Miralax on his new diet, but try telling the gastro dr. that.