Another Day

I was feeling a bit better yesterday. Not so good again today, but better than earlier in the week.

Still, I had enough emotional energy, finally, to jump back into the fray. That meant making phone calls to various doctors and allergists, e-mailing companies about ingredients, etc.

Of course, that means I didn't get much done other than that. It takes every bit of my full time and energy just to take care of the kids, meals and basic household tasks. Any time I spend doing other things like calling doctors means that other things don't get done, but it all has to happen somehow.

Last week I called our allergist, Dr. D, as sort of an experiment. I thought that maybe if I gave him one more chance and worked hard at informing him and explaining things, he wouldn't be so inclined to brush us off.

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I told the nurse about the reaction Baby E had to the mask or anesthetic during her endoscopy three weeks ago. I asked if there was any way to test, or if the allergist had any ideas about how to find out whether it was the mask or the anesthetic she was reacting to.

I described the reaction in detail (a bright red rash with raised bumps on her cheeks and around the circle where the mask would have been, possible rash on her tummy, welts moving into her eye area the next day, swelling of the face and tongue, possible respiratory involvement, symptoms lasting for days [the welts under her eye still haven't completely disappeared 3 weeks later], etc.).

I explained that both the doctor and the anesthesiologist said they'd never seen anything like it before, and pointed out that it was possible the mask was treated with some kind of oil or film, but that post-marketing reports also show reactions including rash and swelling (including topical contact reactions) to sevoflurane.

The nurse called back later and told me that [wait for it] the allergist thought it was unlikely that what Baby E experienced was actually an allergic reaction. More likely it was just marks on her face from the pressure of the mask, since it was probably "so tight on her face for such a long time" (all of 10 minutes).

I think that's highly unlikely, since both the anesthesiologist and the doctor were so adamant that (a) this was a highly unusual occurrence, and not a normal or common side-effect of any part of the procedure, and (b) the mask was so soft and on her face for such a short time that it shouldn't have caused long-lasting redness or any swelling at all.

If Baby E does develop swelling and a severe rash lasting for days just from short-lived gentle pressure on her face, then that would seem like it might need to be looked at further anyway.

However, I don't think that's the case with this. Her skin does mark easily, but it is a smooth, light and very short-lived redness in the exact shape of whatever touched her. It is certainly not bumpy like an allergic rash and it does not spread to areas beyond where the object was touching.

Speaking of the GI clinic, I'm a bit frustrated with that too. It's been 3 weeks since her procedure and the stool tests. I was told to follow up with the nurse practitioner after the procedure, and that she would want to see Baby E again at that point. They also said they would let me know when the test results came back.

I've been calling a few times a week for 3 weeks now and still haven't heard a thing.

I called again today. I also called around to the various allergists in the area trying to find out if there's anyone who is knowledgeable and experienced at dealing with young children with multiple food allergies and somewhat atypical reactions.

My options are very limited. Most allergists in the area don't work with kids as young as Baby E at all. There was basically only one in this state or the next state that I could find who works with young kids, other than the two practices we've already tried.

From talking to the nurse, that allergist, like most others I've talked with, seems to test and run. The nurse actually said he doesn't "work with" allergies or with patients, he just tests for allergies and that's all he really does when it comes to food allergies. There are no shots or desensitization treatments, so all they can do is diagnose.

I told her I was hoping for someone who would at least give us some advice about how to cope with the allergy, be willing to help us figure out what medications are free of her allergens (or at least be willing to prescribe them if I do the legwork and figure it out), give some guidance in figuring out what she might be reacting to, help us with challenging foods she has tested positive to but we aren't sure she's allergic to (i.e. apples), etc.

Is that too much to ask?

I even checked with Dr. D's office to see if there was another allergist in that group that might be better at dealing with non-athsma patients, but no luck there.

It looks like we'll be going back to Dr. "nobody is allergic to rice" or someone else in her practice. I'll call them on Monday, I guess . . . they're closed Friday afternoons.

I have a chiropractor appointment early this evening. DH will watch the kids during that and then is taking off as soon as I get home to go to a basketball game with my dad. I think the kids and I will eat dinner a bit early and then hopefully everyone will go to bed early or at least on time.

I know I'm going to be quite sore after the adjustment, as much as my back and shoulder have been bothering me and as miserable as I was after the adjustment last week. Hopefully I'll be able to go to bed soon.

Baby E still isn't feeling well. She seems under the weather and has a rash on her cheeks and diaper area, but at least the diarrhea is less runny if not less frequent. She was at a level orange for most of the day, fussign unless I was either nursing her or holding her and working very hard at entertaining her.

I've wondered if it could be a die-off reaction from the nystatin and yeast-treating diet, but I don't think that would cause a rash on her cheeks. She seems to be having a low-grade allergic reaction to something. I wish I knew what it was.

Last night Baby E didn't go to sleep until midnight. DH got home from dinner out with his family right about then (he'd gone straight there from work), and we ended up staying up until 3 a.m. talking. Shortly after that Baby E ended up coming into our bed and sleeping restlessly for the rest of the (short) night.

Since Baby E took a very short, early nap today it's felt like bedtime since about 1:30 in the afternoon. :)

DH's dad is slowly making progress. He can manage small amounts of walking and even go up steps now. His knee is still hurting him a lot. Hopefully he'll be well enough to move out of the nursing care center and start the steroid therapy in a couple of weeks.

My mom is still sick and now has a cold/cough again. Her test results are getting quite worrisome again, too and showing signs of problems with her kidneys and some other things.