Interesting - No Milk - No Tummy Aches

So - Bug has now been off of dairy since last Thursday night. She has not had a stomach ache since waking up with one Friday morning. I find this very interesting, although I have to wait longer to be 100% sure they are gone. Of course, she was off dairy all summer and also didn't have stomach aches. Which takes us back to the original question I had walking into our allergy tests this fall. Is she allergic to dairy, or, is she allergic to something else that is getting eliminated when the dairy is removed????? Unfortunately my awesome allergist left a few weeks before our tests, and the new allergy Doctor was horrible. They did not test her for even half of the most common allergies, even though I requested they test for any and everything common. I could go on and on about why the visit was so horrible, but my blood pressure is rising just thinking back on the experience. It included lying to Bug and I about shots being given during the test, pinning her down while she screamed, not timing the test properly, and not talking to me like an adult parent who knows something is wrong with their child. It was a *horrible* experience, and I will not *EVER* take my daughter there for allergy visits again. As much as I love the University of Iowa Children's Hospital I have no faith or respect for allergy department now that Dr. Abu-Hassan is gone.

But anyway, back to my main point. I do not trust the testing that was done, especially since the timing was off (the rushed it due to Bugs horrific non-stop screaming) and the milk reacted right after the nurse left the room. The reaction was raised, really red, and large. She stuck her head in and I pointed out, and she said she'd ask the head nurse to come check on it. No one came for almost a 1/2 hour, and it was the allergist. He told me it "didn't count" because the reaction came after the testing time. He refused to listen to anything I asked or said, and told me she's probably just lactose intolerant. So, in light of the fact that lactaid doesn't seem to do a thing for Bug, that milk seems to be causing/aggravating her problems, I have to sit here and question if that test was really right or not.

I suppose it doesn't matter, except it would provide me with a little closure and a better idea of how seriously to take the dairy stuff. Regardless of if it's lactose intolerance, an allergy, or just a sensitivity if it makes her feel bad we should avoid it.

So, time will tell. I am going to play around and try adding a couple of foods back at a time and see if anything happens. In the meantime as I write this my daughter came down with a stomach ache. It started 1/2 hour ago when she took 3 bites of a homemade cheeseburger. That was my test tonight - because supposedly that small of an amount of lactose should not be a problem if it's lactose intolerance...

Now - on to the GREAT news! I cannot say GREAT enough either. GREAT GREAT GREAT AWESOME AMAZING news! Can you handle it???????????????? I almost couldn't!

Bug saw the dentist today for the first time in over a year. The last visit she was screaming and crying and it was awful. As those of you who have been following this blog for awhile know, she has been in therapy for over a year now to deal with medical anxiety. Apparently it is working! She requested to have a dental appointment when her brother was getting his teeth cleaned a few weeks ago. Today was the day - and we made a deal before she went in that if she didn't get upset during the appointment we could skip the fluoride. (she had told me that was the worse part - and I figured that skipping that was not a big deal if it meant getting her teeth cleaned and also a positive experience under her belt) Well, when she came out not only was she smiling and happy, but she had done x-rays, a cleaning, dental examine, and FLUORIDE! The hygienist had asked her if she would allow her to brush it on her teeth instead of a tray, and Bug agreed. I was in shock, and I swear to you, I almost started crying when the hygienist came out and told me.

To many this probably sounds silly. To those of you who have medical anxiety or a child with it you'll understand how big of a deal this is. Bug is always going to be seeing Doctors for various reasons as she grows-up. It's part of the Ehlers-Danlos syndrome. She'll have the geneticist, her OT, the GI, allergist, and if/when other things happen PT or other specialists. She doesn't have the luxury of being like other kids. She can't afford to be afraid of the Doctors who are there to help her. That's why we've made the trek to Iowa City for a therapist who deals with this type of anxiety. Today I really saw that paying off. Bug seemed to be anxiety free and happy during the visit. I am thankful, relieved, and proud all at once. In fact, I might even be glowing. Can you see it??? hahahaha

We go to therapy this week and she said she can't wait to share her experience - neither can I!

6 comments:

Evil Transport Lady said...

"It started 1/2 hour ago when she took 3 bites of a homemade cheeseburger. That was my test tonight - because supposedly that small of an amount of lactose should not be a problem if it's lactose intolerance..."

ANY amount of lactose could be a problem! My daughter was lactose intolerant. Meaning casin, and all the milk by products made her sick. Switch to Munster or swiss cheese and see if that helps, they are natualy lactose free. And drop those lactaid pills, they don't work.

Just my 2 cents.

Anonymous said...

I am new to your post but is it possible that your daughter has dysautonomia from the ehlers.Go to the DINET site and look around, GI issues are very common, and when the meds dont help that is a give away.
Linda southfloridaeds@bellsouth.net
CP:girlinchair

'lise said...

Hi awesome mom!
I'm so thrilled to hear the therapy is working. As a former medical anxietee (made-up word!), I can appreciate Bug's progress and how much bravery that took to go to the dentist. I'm glad that the hygienist was willing to listen to Bug and suggest an alternative for the fluoride.
It took me ~12 years to get past dental anxiety through sheer determination (I had bad baby teeth and a miserable SOB of a dentist). I still cringe at certain procedures but I've negotiated my way out of them (I can't handle having my teeth polished!).
I haven't had the extent and types of trauma Bug has had from docs/nurses who are un-compassionate/ignorant so my heart really goes out to her. Bug's recent spell of good appointments is really something I cheer for! Go Bug! You rock, girl!
Good luck with the dairy issue - follow your instinct.
hugs, e

Ioma said...

I'm so sorry the appointment with the allergist was so terrible. I agree with you that the allergy tests weren't done right. I have EDS (vascular) and am severely allergic to dairy - any dairy and I get nasty antibiotic-resistant strep infections and bronchitis/pneumonia. Doctors don't like to believe me because it's definitely not a typical reaction, but we've eliminated everything else. No dairy means no strep/pneumonia.

Nobody should be lied to about what's going to happen during an appointment. There might not have been screaming and pinning down if they had been honest with you and maybe given you some time to talk to Bug about what was about to happen instead of just surprising you with it. Letting a patient feel like they have some control, and making sure they understand what's happening, is crucial when dealing with medical anxiety.

I also struggle with medical anxiety and phobia of doctors. That is WONDERFUL news! I'm so PROUD of her and glad the therapy is working (AND that she's excited about sharing her positive experience with her therapist)! I'm glowing, too! :)

Girl, Dislocated said...

This post had me on a roller coaster of emotions!

That allergist visit was a travesty. Not only do they sound like a bunch of incompetent and unprofessional idiots, but it's a real shame that they put her through all of that stress and pain only to have the test be declared invalid. Absolutely ridiculous, unacceptable and completely unnecessary!

On the other hand, I could not help but get giddy reading about Bug's successful visit to the dentist--not just any doctor, but a DENTIST! Sounds like she did better than many adult, non-EDS, dental phobics. I am so living vicariously through Bug right now :) And what makes it even more impressive is that she did all of that despite the preceding mistreatment at the allergist's!

BugsMom said...

Girl! I am *so* happy to see you poke your head in! I've been worried about you!

If you need anything just drop me a line at bugsmom33(at symbol)gmail.com.

Hope things are going a little better for you! You've been in my thoughts a lot!