Wednesday, January 7, 2009

What Have I Gotten Myself Into?

So. Yeah. Little Miss has lung issues. We all know this, especially after her hospital stint last month.

It wasn't her first run-in with lung issues. She had pneumonia and bronchitis pretty bad in May 2007. And she had RSV last winter. And she always has a cold with a cough.

When we went to the pediatrician for a checkup after the hospital stay, he recommended putting her on Pulmicort, which is an inhaled steroid, indefinitely to prevent future flareups.

I filled the prescription and gave her the first dose.

Then I read the side effects: leads to osteoperosis which runs rampant in my family, may stunt growth, weakens the immune system. And there are more. Pages more. And I got less comfortable with giving her this medicine where we immediately had to run and wash her face and rinse her mouth so she wouldn't get thrush.

While complaining to a friend of mine, she asked if we'd ever had her tested for a dairy allergy. I looked at her blankly, and she explained that many children with dairy allergies have them show up as ear and lung issues. I should go research it.

So I did. As infants, many have projectile vomiting and diarrhea. Intractable diaper rash is common. They have lots of lung and ear issues. And they're describing my daughter to a T.

My daughter who was on Xantac at the age of 8 weeks to try to keep some food down. My daughter who slept on her tummy because putting her on her back at any point in time induced projectile vomiting. My daughter whose diaper rash cleared up five months after she was potty trained. My daughter who had tubes put in at 14 months because we never went to the doctor without an ear infections after six months of trying. My daughter who got an ear infection within three weeks of having the tubes taken out at the end of November.

I was convinced that it was worth a try. I mentioned it to my parents, since they do a lot of childcare for me. They both scoffed at me. Told me how cruel it was to deprive her of dairy. Told me how she wouldn't get her calcium. Told me how unhealthy that would be.

To me, doing an eight week (my random should be long enough to figure it out timeframe) trial of no dairy was worth the possibility of not having to put her on a daily steroid.

Dairy free commenced on January 1.

On December 31 before everyone went to bed, I sat the wee ones down and talked abot Little Miss's allergy (or potential allergy). I explained that she couldn't have dairy and what that meant. I talked about what she couldn't eat anymore. And then I talked about what she could still eat. They both got it.

I had no idea that dairy was in so many foods. On Saturday, we stopped giving her vitamins when a friend asked if we'd found dairy free vitamins. I never thought to look there, but yep they have whey in them.

We went on a trip to Costco Friday so I could look at the labels for items we have in our house but that no longer have the original packaging. Wheat bread? Thankfully, it's ok. Waffles? Out. Ovaltine? Out. Taquitos? Chicken is out but beef is ok. Goldfish? Not surprisingly, out. Tuna? Phew, in. The list went on and on.

On Saturday, Little Miss had a birthday party. With pizza and cake. I brought along beef taquitos and Thanksalot Girl Scout cookies (one of two kinds that are dairy free by the way). The girl next to her was intrigued and wanted what we were having. Little Miss didn't object. Well, ok she objected, but only when someone put a piece of ice cream cake in front of her that she knew she couldn't have and was mad that someone tried to make her eat it.

And did you know that dairy isn't just milk? Whey is obvious. Casein isn't too hard a one to figure out. But then you start getting into the tricky ones: lactalbumin, nougat, ready sponge, zinc caseinate, hydrolysates, and more. Many foods label themselves with the Allergen information (corn, soy, wheat, eggs and/or milk), but not all. I'm getting really good at reading labels.

This is where enjoying cooking comes in handy. I can adjust some things to use soy milk for all of us instead of regular milk. The wee ones actually like (thanks, Mom) Kraft mac and cheese with soy milk and no butter. But caramel and caramel coloring, natural flavors, spices and the like may or may not contain milk or milk proteins. Let's just say that I'll be making a lot of phone calls checking things out before I give them to her. Unfortunately, when milk slips in, it doesn't matter if it's some teeny thing or a huge glass of milk.

Then I looked at the catering menu for daycare. I'm now going to be packing a lot of lunches, as many have milk in them like the chicken and beef meatballs they had on Monday. And possibly the breads (I haven't gotten an answer on caramel from the catering company). And the gravies. They're working with me to only give thumbs up snacks from their stock.

Preschool is more concerned about litigation apparently. If I want to be sure she doesn't get an allergenic food, I need to send in a snack. So she now chooses a snack each morning. Luckily, she's big into fruit.

My parents still think it's cruel and wrong to deprive her, but they sound like they're going to respect it. I found a natural foods store that has milk free vitamins.

And so far? Like I said, she gets it. And I have two positive signs. She has a ton more energy. She was never really lacking before, but she's literally bouncing off the walls with happiness and spark right now, and not in a bad way. I have to think that this means her body is happy, right? And today we had a checkup with our pediatrician -- who's willing to go along with this but not happy that I don't want to do the Pulmicort -- and she had "beautiful ears." Her ear infection from two weeks ago is gone and a new one didn't develop in the interim.

I'm still planning to see an allergist to have her tested specifically for a milk allergy (and gluten while we're at it), but I've heard that they're notorious for false negatives. I'll be interested to see what he has to say, too.

Knock on wood, this is it. And fingers crossed that we continue to figure this out. Do any of you have allergies like this? If so, how do you make accomodations and keep everyone happy and healthy?


AutoSysGene January 7, 2009 at 6:06 PM  

I eat gluten free 99% of the time, I'm the only one in my family and I can chose what to eat accordingly. If it was my child this would be a totally different situation.

My daughter is also having lung/ear problems. I hadn't considered dropping dairy from her diet...I'm going to have to give that some thought.

I have no advice other than to wish you luck, it sounds like you have a really good handle on things already.

Michelle January 7, 2009 at 7:18 PM  

Melissa - I didn't realize you were gluten free. I've had many ask me if we're CF or GFCF, as they seem to go together so often. When we visit the allergist, I'm definitely going to ask to get tested for that (although I know the test there is unreliable, too) and get his thoughts. Thanks for the positive wishes!

MaricrisG January 7, 2009 at 9:30 PM  

I'm glad that you took this step. I have heard of this allergy and it's also affecting adults. I beg to differ that your child will not get her daily dose of Calcium due to lack of dairy. There are calcium rich veggies that you can substitute dairy with: - and soymilk. I'm lactose intolerant and soymilk is rich in Calcium and widely use to substitute for cow's milk. I hope she gets better.

Visiting here via SITS- Maricris

Cookie January 8, 2009 at 7:21 PM  

My neighbor's son is allergic to nuts and eggs. He's best friends with my son. So I have to be very careful. I also used to work in the food industry and allergens and labeling is a HUGE concern, mostly for liability reasons. Manufacturer's are more likely to list possible allergens that could be present than to leave them off. Does that make sense? That's more a result of possible cross-contamintation in the plant. You prolly already know all of that anyway. But I also know that there is a Food allergy agency and many great websites, message boards and online resources of parents of kids with food allergies.
For your sake, I hope if she is allergic to dairy that she will outgrow it! But I also hope that you find the solution to whatever is causing her difficutlites. And I agree, being dairy-free is worth a try! Good luck!

Michelle January 8, 2009 at 9:19 PM  

Zen Ventures - Welcome! I agree that we won't have an issue with calcium, but my parents aren't always the most open-minded. We've been using the soy milk for awhile, and she'll drink that luckily. Thanks for the tips on the citracal website!

Cookie - There are a lot of allergies out there, you're right. A good friend is dairy, corn, soy and wheat allergic and has to do EVERYthing for her son, so she's been a huge help. And the labeling is very true. My concern is the "natural flavors" and "caramel" or "caramel coloring" that may or may not contain milk. I'd hate to be messing up my own trial! Fingers crossed this works!

Angela January 10, 2009 at 10:41 AM  

Glad you may be onto a solution, but I know how hard it is to deal with childrens' food allergies. My husband's cousin has a daughter with egg and peanut allergies. Peanuts are one thing; eggs are in absolutely EVERYTHING.

Do you guys have a Whole Foods anywhere nearby? They have a great variety of products for special diets, and the lack of artificial/prohibited ingredients makes label reading easier. Just a thought.

Hope you can get to the bottom of whether it is in fact an allergy!

Michelle January 10, 2009 at 3:23 PM  

Angela - You're right. Eggs are in so much! The milk proteins are the same way, which kind of makes sense. There is a Whole Foods somewhat nearby, but for the most part I cook from scratch, so that helps. But baking... hello butter and milk! I still have to figure that part out. And chocolate -- I haven't done much checking to see what has milk and what doesn't ;)

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