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.
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!
Monday, December 15, 2008 | | 6 Comments
You know, it never fails that I think we are past something and there it comes again! :) We have been battling stomach problems again for almost three weeks now. I'm at the point where I feel like quitting again. I know, I know, you've read that before. I burn out, take a break, read like crazy, get hopeful, and then crash again. No, I'm not bi-polar. I'm just a Mom who wants to have her daughter simply feel "good" on a regular basis, and it just doesn't ever seem to work for long. Thank you Ehlers-Danlos Syndrome. You suck.
So, let me stop whining for a moment and try to sort out what's been going on. Sometime not that long after my happy post about how great Bug was doing the stomach aches started again. Now, changes that have happened prior to them starting again are as follows:
1) We saw the GI and cut her Prilosec in half
2) We started to reintroduce dairy, limiting her to only a milk at school each day - and a lactaid with that milk
3) It got cold (hey, things do seem to be worse with her in the winters - just read back in this blog and you'll see it too!)
4) We started eating more processed foods again, since we were no longer worried about dairy
5) She started having a sugar-free juice at lunch instead of milk
Ok, so those are the changes. Now, the first thing we did after the stomach aches returned is get rid of the sugar-free juice. As it turns out it was made with Splenda, which can cause horrible side effects INCLUDING stomach pain. Google it - I was shocked when I called the GI and she told me about it.
At first I thought it solved the problem, but it's back. To complicate things the flu is going around and anyone who has a kid with stomach problems will understand me when I say I have no idea which is which until the puking begins. However, there are strains of the flu that don't cause puking.... Anyway, over Thanksgiving I thought she had the flu. Stomach pains for 5 days, not feeling like doing anything because the pains were so bad. She had a couple of OK days, and then BAM, we are back to stomach pains again!!!
I am at a loss here. Starting tomorrow I'm pulling her off of dairy again to see if we can get this thing to stop. That causes a chain reaction because it means no mac and cheese or other processed foods. (which I know is a good thing, but gosh darn it, convenience really saves me sometimes!) I guess I'll give that a week and then call the GI if there is no improvement. Something I really don't want to have to do - I want my daughter better, not on more meds!
Anyway, I'm going to stop complaining about that now. :) Everything else is going ok with her right now. We didn't have our IEP meeting yet as school got dismissed early that day for a huge winter storm. We are now having it next week. I still don't know if we are rewriting the IEP for next year or moving on to a health plan, but that's ok, I am still comfortable with either one.
I think that's it for tonight - tomorrow my 12 year old non-ehlers-danlos child is getting his braces. I need to rest up and get myself prepared to experience this milestone with him! :)