Heading out in a couple hours for the big appt. Records are being faxed, and I'm bringing a hard copy too. The blood test results from Friday still aren't in. He's been up and down the past couple days, but the BMs have definitely decreased. We'll see what happens this afternoon...
Pine Tree- I may definitely be asking you for advice! Trying to convice a 2-year-old with a hurt tummy to eat is a nightmare.
mcgwigan- Chicken nuggets are hit or miss, but I did get some gluten-free ones to try. I tried som million dollar gluten-free hot dogs last night without luck...
The appointment was remarkably awful. REMARKABLY awful. First things first - the entire hospital complex was absolutely ghetto. But that's besides the point.
After waiting an hour we got called back and three nurses weighed DS and got his height. Right off the bat I got a terrible vibe from the whole situation. This was a PEDIATRICS SPECIALTY clinic, at a university hospital. But nobody we encountered did anything to make DS feel comfortable or not afraid. He was totally freaked by the nurses who just stood there silently, staring at him like they had never seen a child before. It was SO WEIRD!! Then they left us in an exam room. When the doctor came in her first question was, with a quizzical frown, "And why did you think he needed to be seen here?" What a way to start. Her office is the one who rushed us in today!!! She cut me off two sentences in as I explained he's always been small, but recently has lost a lot of weight and has had stinky poops. That was it - I never even got to explain 1/10 of his history. She grilled me about the poop, in a really bizarre accusatory way, and DS totally started to cry. She just gave off the worst vibe ever. Everything about the poop had to whether he was absorbing fat, and she mentioned cystic fibrosis and some other syndromes I didn't know. When I started to ask about celiac she said "sometimes emotional issues present as celiac", and just continued talking at me about the poop. ?? After maybe 3 minutes of all this an equally mean nurse came in and just stood there. The doctor asked me to lay him down on the table, and without having addressed him directly AT ALL, yanked his shirt up and started prodding his tummy. He was screaming and reaching for me, and she actually SIGHED IN FRUSTRATION and backed away from him with a terrible look as I grabbed him as fast as I could. There was no way this woman was going near him ever again. Then she turned to the nurse and they started talking about the OR schedule next week - without a word to me. They left saying they'd be back shortly. 15 minutes later some dude came in and started explaining how the surgery process would go next week!!! WTF?? Then another 15 minutes passed and the mean nurse came in with a brochure about children and anesthesia and she wrote WEDNESDAY 12:00 on it with a marker. I asked what was going on, and she said "this is when his procedure is scheduled for" - so I asked WHAT PROCEDURE? Why, the endoscopy, of course!! And that was it- no explanation.
Once I got him into his stroller and facing away from me I cried silently the whole way to the car. It was SO AWFUL. I can't believe how horrible that place was, and how horrid the people were. I'll never forget it.
Oh no, I'm so sorry. That sounds absolutely awful. Is there any way that you can get in to a different office? That doesn't sound right at all.
The endoscopy is the definitive test for celiac, so that's at least a good thing that you will get some answers. He does need to be eating gluten though, we were told that a regular diet was fine, no need to add additional gluten products. We were also sent for a test for cystic fibrosis after DD's endoscopy came back normal - it's a very simple sweat test, fast and non-invasive. Although since they now screen for cystic fibrosis at birth it's pretty rare to diagnose it later.
Yeah, we're going to find a different hospital and a different specialist - I'm cancelling the endoscopy they scheduled. No freaking way that woman is coming near him again!
semily How absolutely terrifying! Yes -RUN to another Dr! I would maybe file a complaint with the chief of staff at that hospital-talk about bad bedside manner! Ugh! I was really hoping that the appointment would go well...
I'm so sorry, Semily! That is beyond awful! I have tiny kids, so I have sort if been following your posts. I'm wondering if you are in my area? Sounds suspiciously like something that might happen here and hospitals in my area. If you are, let me know. I can get you some more recs - as I have friends that have some recommendations for good gastro. If you're in this area, I would also highly recommend checking out DuPont children's hospital in Wilmington.
(((hugs)))
Robyn & Scott - August 29, 2004 * SM - July 17, 2007 * * BH - APRIL 14, 2010 *
Good for you Semily! If the doctor does find something, you will have a long history of working with her, so you definitely want to find someone you like.
for those of you who've been through the preliminary allergy testing, what do you think about a test result showing just a trace allergy to wheat? my ds has some of the typical signs of wheat allergy (bloated stomach, crying that his stomach hurts, constipation, pale runny poops, tons of passing gas), but our ped says that the test result is so low that he doesn't believe it's a true allergy. i think he said normal range is like .04 and his result was like .09.
Allergy testing is imperfect, and even without a true allergy he could have an intolerance. In his case I would experiment with things like oats (fine as they are not wheat, but usually cross-contaminated so someone with Celiac would have to avoid them (I'm talking oats in the store for oatmeal, and a friend with Celiac said McCanns ? Steel cut are fine)) and see how he does. But if it's bothering him I would absolutely avoid it to see if he feels better without.
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