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December, 2011

  1. 3 Specialists, But Few Answers

    December 15, 2011 by Michelle

    In the 2-and-a-half months since I’ve written, we’ve had visits with 3 specialists — gastroenterologist, nutritionist, and endocrinologist.

    My delay in writing started after the first two, GI & nutrition, because I felt overwhelmed by the visits. I walked in feeling like I was nearing the end, just a few people to say, “Yep all tests look fine, she’s just small.” But it was the beginning of more stress. We did these visits back to back in what ended up being close to 7 hours between travel, visits, blood drawing, & lunch with no nap. Bunny passed out in the car before I left the parking garage. We both napped about 3 hours once we got home.

    Now, on the eve of follow up appointments with GI and nutritionist, I’m finally getting my thoughts reorganized in a blog post.

    Here’s the quick rundown:

    Early October: GI & Nutrition

    GI actually uses the term “failure to thrive” my heart sinks. Says we have to try to get her caught up by age 3 because it can affect the rest of her life. Good news, head circumference is good, so her brain is growing well. Prescribes a medicine for acid reflux in case that’s keeping her from eating. Orders lots of blood work & refers me to endocrinologist.

    Nutritionist brings to light the fact that bunny being constipated some days could be a huge issue. That tiny tummy only holds so much. If she’s constipated, no room for food & she won’t eat. (this makes much more sense then the “maybe it’s GERD” from the GI, at least to me.) We get tips to add about 30-40 more calories a day, meal time tips, & told to give her a fiber supplement. She also reinforces something I read online, that breast milk will help with weight gain more than whole cows milk. (Though cows milk is ok, too, breast milk is better.) So glad I’m still nursing 2-3 times a day.

    We decided not to fill the acid reflux prescription, but focus instead on the fiber. With no other symptoms but low weight to go on, we can’t bring ourselves to give her medicine.

    Blood Test Results #1

    I was told to call for results, that they wouldn’t call me. 2-3 weeks later when I still had neglected to call, the nurse called and left me a message. Another 2-3 weeks later I finally call back. Mom fail.

    Results were mostly ok. They still can’t read the celiac panel, but nutrition looks good–except Vitamin D is in a gray area. It’s in the normal range, but the low end of the normal range.

    We increase Vitamin D supplement. I feel guilty about the 4-5 weeks she could have been getting Vitamin D if I had gotten my act together & called a few days after the test. Nurse says if it had been a major worry, they would have called me back more. I still feel guilty.

    Late November: Endocrinologist

    I was feeling okay going into this one. I figure she must have grown since her clothes are looking short in the arms & legs.

    We measure. More than an inch taller! Yippee! She’s lost weight. Only a few ounces, but still, how could she be taller and even skinnier than before? She should have gained, so in my mind it’s almost like more of a loss. The weight for height curve is looking even worse. I haven’t even met with the doctor yet, and I’m stressed again.

    Once he does come in, he says the weight looks like more of an issue than the height. (Height would more likely indicate endocrine related issue, weight, GI.) Also, he notices her soft spot hasn’t really closed in as much as expected at this age, could be delayed related to rest of her growth delay. (My brain flips back to Vitamin D guilt.) He orders blood tests but warns me that growth hormone is hard to test with blood work. There are 2 factors they can test with blood. If both are low, most likely growth hormone deficiency. If one is low and one normal, could be growth hormone could be caloric/nutrition deficiency. Essentially, inconclusive. He tells me it’s obvious she has a good appetite (she nursed almost the entire visit.)

    Guess how the blood work comes back. Yep. Inconclusive option, could be growth hormone, could be nutrition. There’s another more involved test, but it doesn’t sound fun, and he doesn’t think it’s worth it yet. We’ll keep tracking height and seeing other docs, and unless something major happens, we don’t go back for another 6 months.

    Tomorrow: GI & Nutrition Follow Up

    Please have gained weight in the last 3 weeks. Please. Please.

    At one point in the last three weeks I coated blueberries in olive oil and added a touch of whip cream just to increase calories on a food I know she likes. We don’t generally do dessert, but we give her ice cream one night just to sneak in a few more calories. I’m sure this is the wrong way to do it but I’m feeling desperate.

    I’ll know more tomorrow. I doubt I’ll know much, but at least I’ll know her weight.