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Sunday, May 22, 2005

Just said good night to the book group. It was a lovely evening. We'll get to meet as a group one more time, right before we go next month. I almost don't want to, because I don't want our last time with them to be a weepy goodbye session. I wish we could meet, but pretend that Bobby and I are not leaving, and that we'll all be meeting for coffee at Barnes and Noble later in the week. I hate goodbyes.

I guess this is the price of getting to know people and forming friendships - the painful goodbyes.

Speaking of goodbyes, our history co-op put on a surprise goodbye party on Friday. Three of us are all leaving at around the same time, one for England, one for California, and one for Kansas, so there were lots of goodbyes to be said. Sophie was thrilled with all the little gifts she got, and I was very touched by all the thought and care that had gone into the party. Yet more people who I'm going to miss ...

We went straight from the party to the nutritionist, where my mood rapidly changed from a teary belief in the wonderfulness of friends to something distinctly more jaundiced.

I went to see this nutritionist in the belief that she would work with Emily to find ways to increase her calorie intake. I had thought she'd try to figure out the kinds of things Emily normally eats, and the kinds of things she likes to eat, and would then suggest ways to increase the nutritional value and calorie count of her favourite meals. I also assumed that, since our endocrinologist recommended her, she'd be au fait with the particular issues that GHD kids have.

Unfortunately, it didn't quite work that way. The nutritionist basically told Emily that it didn't matter if she didn't like something, or wasn't hungry, she simply had to eat six meals per day, each consisting of a dairy serving, a fruit, two starches and a protein. Plus two veggies at dinner. And that if she didn't eat, she wouldn't grow. Well, no shit, Sherlock! I actually did already know that she needed to eat more. But tell me this. If someone isn't hungry, how do you force them to eat? Do you make them sit in front of their plate till it's all gone? Do you do as the nutritionist says she does with her (non GHD) children, and tell them that not eating isn't a choice? Sorry, but I don't parent that way. Aside from the fact that I think it's cruel and disrespectful in the extreme to try to force someone to eat, I also think that it's bound to be ineffective. Because when it comes down to the crunch, you simply can't make someone eat. Ultimately, it's their choice.

Fortunately for both me and Emily, when Emily was first diagnosed with growth hormone deficiency, I joined an email list for parents of kids with growth disorders. Last month, when the endocrinologist told us that Emily needed to gain weight, I asked the moms on that list for advice, and was given tons of tried-and-tested tips; tips from mothers who really had been-there-and-done-that. And, thanks to them, in the past month Emily has gained almost 3 pounds.

So I guess we'll just continue on as we have been, and hope that what we're doing continues to be successful.

It is a real shame that the nutritionist was so unhelpful. The interaction that angered and upset me the most was when she said that if Emily would only eat more, she might not even need the growth hormone shots. Unfortunately, this is simply not true. Em's MRI showed that she has an undersized pituitary, and stimulation tests showed that her pituitary produces very, very, little growth hormone. Without growth hormone, kids simply don't grow. This is why undiagnosed GHD kids are often on the chubby side - they eat, but they grow out, not up. So to say that Em might not have needed a nightly shot if only she'd eaten better is not only untrue, but also very unfair to Emily. Way to go, nutritionist. Why not make her feel guilty for something that is not her fault?

I did try to say something along these lines to the nutritionist, but, since her comment totally took me by surprise, I wasn't terribly eloquent. However, Emily and I talked it through on the way home, and I am certain that she now knows that, while she absolutely does need to eat more in order grow properly - because the growth hormone can't do its job if her body isn't properly fueled - she also knows that it's not her fault that she is growth hormone deficient, and also that, sadly, she will need to continue with the GH treatment even when she's gained some weight.

I hope we have better luck with health care professionals in the UK. We certainly seem to have had run-ins with a variety of useless ones here.

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