Change of Plans

Baby E seemed to be feeling pretty good this afternoon, even after eating more gluten. But tonight she's absolutely miserable again--and all she was willing to eat at dinner was rice, chicken and carrot (she tested negative for carrot allergy, and I've discovered she likes them from my grandma's garden, shredded raw.

She is just squirming and flailing around crying in my arms. I don't know what to do . . . walking with her or trying to distract her doesn't seem to help.

. . . Ah, she finally calmed down enough to nurse. Poor thing.

When I told the GI doctor that Baby E has a lot of stomach pain, he said, "How can you tell? What makes you think her stomach hurts?" The tone he said it in sounded like he didn't believe I could possibly know whether her stomach hurt or not, since she doesn't talk much.

Believe me, I can tell. Besides the fact that she grabs my hand and tries to get me to rub her tummy, I can just tell by the way she writhes around, crying, curling up and then arching her body backwards. She'll whine, "Aaaai! Aaai! Aaaai! Ow! Aaai!" over and over. I wish I knew how to soothe her.

Now she's crying and writhing again.

OK, a couple of hours later . . .

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I paced the floor and cried with her until she wore herself out. Then she suddenly wanted some of the food she had been adamantly refusing until moments before.

She was alternately happy and hysterical every few minutes for quite some time after that. When she went into another long crying rant a bath finally soothed her--until 5 minutes after getting out.

Now she's getting sleepy again, and nursing. I expect she'll end up in our bed again tonight . . . she at least sleeps a little between crying episodes that way. Last night she and I slept from 4 a.m. until about 7:45.

Screaming again . . . carrying her downstairs worked this time. She got interested in the TV show DH is watching. I'm ending up letting her watch Winnie the Pooh or Blue's Clues a lot lately. Sometimes it's the only thing that soothes her.

She requires my full attention almost 24/7. I just can't see putting her down and letting her scream in pain by herself any more than I absolutely have to. But I'm having a really hard time balancing the other kids' needs and everything else with her needs. Baby E's discomfort is getting worse by the day. Today was much worse than yesterday, which was worse than the day before. I dread tomorrow.

The more I think about it, the more I realize why I came out of the GI specialist's office feeling so "ugh". The appointment was not a positive experience. I felt that I didn't communicate well or explain myself well at all.

Yes, I know that the symptoms Baby E is experiencing now are almost exactly the same as her allergy symptoms. I understand that to an outsider it may seem like I'm imagining things. But I really do think there's something besides allergies going on here--or at least other than her known allergies.

An example of one of the many "ugh" moments in the appointment: He said something like, "But she seems fine . . . she's gaining weight normally and growing and everything, right?"

I said, "No. She weighed 20 lbs from 6 months to a year of age. She was I think 23 lbs. at her last check-up and now according to your scale she's 21 lbs."

He said in the tone one might use with a recalcitrant child, "Now, see, this is the kind of thing I need to know. That's important. You need to tell me that sort of thing. Nobody told me that; there's not very much information here in her chart."

I had written that down, along with about 20 other symptoms she has been having, on the intake form he held in his hand.

Another time he was asking me about family history and I told him that my niece has celiac. He asked several questions about how our niece was diagnosed, etc. and then said, "So how's her general health now?" I told him that she's having more trouble with her nephrotic kidney disease now than with the celiac itself and he suddenly became very alert and interested, and started asking me for all kinds of details about the kidney disease.

I mentioned (again) to him that my mom has a strongly hereditary kidney disease too, and he asked me who her nephrologist was. I told him that I didn't know the name; someone at [nearby excellent teaching/research hospital].

It was right about then that he got frustrated again and I realized he was talking about Baby E, not my niece or my mom. I don't know how long ago the "she" in his questions had changed, or how many times.

"You're confusing me!" he said, furiously scribbling out all the copious notes he'd just taken. "I was talking about HER!" gesturing toward Baby E.

I apologized profusely, wondering how I'd gotten so confused. It was only just now that I realized it wasn't all just me. It might have helped a bit if he'd used Baby E's name a few times instead of just referring to her as "her" and "she" the whole time. Not that I blame him; I'm bad enough with names myself. But at least it's good to know that the poor communication wasn't solely on my end.

We were supposed to take a family vacation to Vancouver, BC this coming week, leaving on Saturday. The arrangements are all made, accommodations paid for. We've been planning this trip for a long time.

I told DH tonight that I can't see taking Baby E on a long trip like that when she's so miserable. Especially since she's not handling even short car trips well at this point.

Plus, it would delay our getting a diagnosis and helping her feel better. I'm certainly not willing to make her suffer like this for an extra week for a trip she's not going to enjoy anyway. We could get the endoscopy this coming Tuesday instead of a week from Tuesday if it weren't for the trip.

So I suggested that DH take the older girls on the trip while I stay at home with Baby E. He said that if Baby E and I don't go, he doesn't want to go either. So we may end up canceling the trip or just taking a brief overnight visit to BIL/SIL's house just a few hours away instead if Baby E seems up to it later.

Tomorrow I'm going to try to get in to see our regular pediatrician. I'm going to print out the PubMed article and a number of posts from the corn allergy forum saying that people who are allergic to corn often have bad reactions to dextrose IV solution. He's very good about considering such information seriously.

I trust him quite a lot. Even the allergist recognized his name and immediately said, "Oh, Dr. B. He's wonderful!" That seems to be everyone's opinion of him.

I think I'll feel better if I can just talk some of this through with him and have him see how miserable Baby E is compared to last time she was in to see him.

I am going to ask him for a referral to a different pediatric gastroenterologist, too.