Tipping the scales

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Wow! One month ago, we cut out gluten from Madeleine’s diet. We cut it out because she had chronic diarrhea, was passing undigested food mere hours of ingesting it, was extremely irritable, and had gotten to the point where she was refusing almost all food. At 13.5 months she was the exact same weight she was at 9 months. We didn’t introduce gluten to her diet until she was 9 months old. I explained some of our progress since cutting gluten out a few weeks ago, and here’s another update.

For a week and a half, Maddy was sleeping until 6am consistently! She’s back to her early wake ups, averaging 4:15am this week, but we see the light! My sister just posted about sleep in kids with SPD here, and much of her experience is similar to ours. But, we learned something this month: when Maddy’s dietary and SPD issues are sorted out, the girl can sleep!!

For the last week or so, Maddy has been eating voraciously. She’s still limited in exactly what she’ll eat, and there’s absolutely no mixing of textures…. but she’s finally eating again! The ladies at her daycare said to me this week, “Maddy is one of the messiest eaters we’ve had. She won’t let anyone help her at all. She’s hard to clean up afterwards – she needs a pressure wash!” That is such a big change from hearing that she didn’t eat any lunch several days in a row. I should also point out that the idea of not letting anyone feed her is very consistent with SPD. The more control she has over what goes in her mouth, the less distressing it is for her to have various tastes, temperatures, and textures in her mouth. We’re now back to trying to address her SPD-related food issues and it feels so good to be back to this stage.

We’ve also had two medical appointments this month. The first was an abdominal ultrasound for Maddy, just to rule out any structural issues that could be causing pain or digestion troubles. It was an experience in itself, as Maddy’s appointment was at 10am and she wasn’t allowed to eat until after (though, we cheated and gave her something small at 6am). I felt so badly saying no to her as she asked for food all morning. As you can imagine, Maddy was less than co-operative during the ultrasound (can’t really blame her!), and unfortunately, the ultrasound tech was not the most empathetic of professionals we’ve had to deal with. The appointment ended abruptly with an, “I can’t do this anymore.” It was worth it though, and I’m so pleased to report that everything came back normal.

Our second appointment was with our amazing pediatrician (who comes to our town one day a week and has an outpatient clinic at the local hospital). His advice: you can’t argue with success. If cutting gluten out works, keep it out. He wants to wait and see what the GI specialist advises, but suggested the only variable we try changing again in the next 6 months is dairy. He was taken aback by the strong history of food issues in my family (aw, aren’t we lucky to be Bayntons?), and because of that felt that not attempting to re-introduce gluten until the GI specialist weighs in was the best approach (thank goodness, because that’s exactly what we wanted to hear). He then commented that perhaps Maddy’s multiple protein intolerances were all related to a potential Celiac diagnosis – something we already suspected. Can I just say how much I love this man? He’s so open to our experiences, hearing what we say, and trusting in it. Many of his patients are babies with food intolerances, so he knows his stuff. There’s nothing more satisfying than seeing a professional who trusts and hears you.

The pediatrician also suspects that Maddy had lost weight between 9 and 12 months, as chronic diarrhea will do that to you, but that we just didn’t notice because she had no appointments between those times. Wonder of all wonders… Maddy has gained 2 pounds since we cut out gluten. Two pounds in one month after no weight gain (and potential loss) for 4.5 months?! That just confirmed both for the pediatrician and us that we’re on the right track.

Finally, I met with a dietician that works out of the same office as I do. She has been so helpful, printing out recipes as she comes across them and leaving them on my desk. I have a potato instead of pasta lasagna, a red lentil spaghetti sauce, and some gluten-free breads to try. She also gave us some quick soy protein meals that we can try to bump up Maddy’s protein intake since she almost always refuses meat. I’m so happy that Maddy isn’t reacting to soy – it just makes meal planning a touch more flexible for us.

For the time being we’re back to only dealing with SPD related issues with Madeleine, and it feels great. We’ll leave the food issues alone until we see the GI specialist. What does that mean? It means that Maddy is happier. That means that mommy and daddy are happier, and, from what Mum Farrar has said to me, it also means that grandma and grandpa are happier. It’s a chain of happiness!

Life still isn’t what it might be with a typically developing child, but it’s the life we’ve become accustomed to. Life with an SPD toddler can be chaotic and unpredictable, but we’re still learning and we’re trying to trust that overall things will just continue to improve. I’m learning how to handle (or, rather, ignore) comments by others who suggest that our experiences are “normal toddler” stuff, and we’re trusting ourselves more. Who cares if everyone else thinks we’re whiners? They don’t live with Maddy, and until they do, they have no concept of how atypical some of her behaviour may or may not be. We’re doing the best we can to support Maddy’s development, and if that means we annoy others by saying she’s more difficult than a typically developing child, then so be it.

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