Back in the spring when it was clear something was wrong in our house, when Josie started behaving like a colicky baby, waking up for two hours every night and screaming for two hours every day, I took her to a new pediatrician. He came highly recommended for complex cases and was considered to be fairly woo-woo. A friend told me he had a naturopathic physician in his office – my dream come true.

At our first appointment, he ordered more blood work, an EEG of the frontal lobe of her brain, and a breath tolerance test. The tests were going to be such a pain and I really didn’t think they were going to find anything. Here was an MD I respected who was taking my thoughts and concerns seriously and making suggestions and all I wanted to do was roll my eyes and say, an EEG, really?

The EEG was awful. It didn’t hurt her but I did have to hold her still for a long time then try to get her to fall asleep. The blood draw was hard to get. It took 3 visits and multiple tries. By the time we were done, Josie was crying, I was crying and I think the phlebotomist was on the verge.

When those tests came back normal, I decided we needed to take a break. The final piece, the breath tolerance test was supposed to take 3 hours and I just didn’t have it in me. A few months had passed when I finally decided to schedule it, not because I thought it would yield illuminating results, but because I wanted to see this doctor again and I didn’t feel like I could go back without following through with his recommendations.

So I started talking to Josie about the test a few days in advance. I explained that we’d go in the morning, that we wouldn’t have any breakfast, that she’d drink a glass of special juice, then breathe into the tube every 30 minutes for 2 and a half hours. They’d be able to tell by her breath if something (lactose) was giving her tummy ache. If she was unable to digest lactose they would find a level of hydrogen in her breath that would reach its peak after two hours – that’s why we had to stay so long.

We arrived the morning of the test, loaded down with bags of her favorites books and toys and a few snacks for when it was all over. We’d had three breath samples, and had been there for about an hour when the tech came out and told us we were done. We could go home.

But… Wait… I mean, we haven’t even touched the DVD’s yet. She’s only just now started rolling on the floor. We still have toys to play with. We’ve been pacing ourselves!

We were done. They sent us home after an hour because she’d already reached the top level, demonstrated the strongest reaction possible. They didn’t even want to see what happened when the level of gas in her tummy peaked at 2.5 hours.

Apparently our girl is totally off-the-charts lactose intolerant. You guys, I almost didn’t have her take the test because it was a hassle and because I didn’t think it was the real problem.

This is something I’ve had a problem with in the past. There are so many tests I wish I’d had. The things I could have learned – that I had endometriosis, that I was allergic to gluten, that I was B12 deficient. I should have let the doctors do their jobs. Here’s what I’m learning: when looking for the cause you’re bound to run into some dead ends, but you’ve got to go down those roads to see where they lead anyway because eventually, one of them may actually lead to a castle or a princess or a pony in a field, and I’ve always wanted a pony in a field.

9 thoughts on “Trust

  1. Heather

    Oh yay!!! I’m so glad you found out. I still say what I said to you at lunch last time I saw you – you may not have had EVERY test every time it was recommended, but you are someone who will always keep looking for the answers, and that’s why you are such a great parent for this kid.

  2. Alyssa

    Hooray for figuring something out! And way to go both of you for making it through all the poking and prodding.

  3. Mom

    But wait!! Give yourself some credit. Huge credit. Not just the doctors. Moms MUST rattle, shake and persist when they know their kids are just not right.
    Your doctors were told, countless times, that every female on both sides of your family had endometriosis. Every single one and that your own Mom had a hysterectomy at 31. They sort of listened and you suffered needlessly.
    I’ve got to admit I had no clue about gluten, but you were lactose intolerant at birth; allergic to the milk products your breast feeding mother ate. Your doctors did not want listen. I was a nervous mother. Here, give her these drops, and have some wine youself.
    But you have persisted and won hugely important information for the health of your child. Every Mom must trust her own instincts and persist.
    You have persisted and won this round and my granddaughter is better for your love, patience and persistence. Bravo! Well done. Mom

  4. Tami

    It’s just amazing to me that most parents wouldn’t have found this doctor, taken these tests… They figure their kid is just going through a rough spot. I know my kids have food sensitivities and mostly we have figured out via elimination diets, but this really makes me want to take sine tests and figure this out! You pursued this and you have some golden information now! Go, mom!

  5. Jolene

    Hi, I’m looking for information about a link between seizures and lactose intolerance. Do you know if an EEG is ever abnormal do to lactose intolerance?

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