Challenges

It was the day before Penny’s 1st Dairy Challenge. A dairy challenge, in Penny’s case, meant that I would bring a homemade baked good that contained dairy to the Dr.’s office and she would eat this baked good under proper medical supervision- this to ensure that if a severe reaction occurred, the medical staff will have control of the situation. Also, per the allergist’s instruction, Penny had to stop any antihistamines and/or asthma medication 5 days prior to the test.

I got ready: went to the supermarket, got some gluten-free flour, enjoy life chocolate chips, eggs, coconut oil, and the most important ingredients for the challenge: cow’s milk. After everyone went to bed, I stayed up looking for dairy-full cupcake recipes and baked. I’m not going to lie-I was nervous, but positive.

We had decided that the four of us were going to be at the Dr.’s office on this BIG day. Not only to celebrate if Penny passed the challenge but also to give each other support. After all, isn’t that what family is all about?

On the day of the challenge we were there at 7:45 am. Penny was called in at 8:00 am. After having been examined for her asthma and everything else (height, weight, changes in health, etc), the Dr. ordered her to start eating the cupcake. First, they gave Penny ¼  of a teaspoon of the cupcake, slowly increasing the quantity every 15-20 minutes until she had eaten about ¼ of that cupcake. There was a high level of supervision throughout the whole challenge. The nurse would come in the room every 3-5 minutes to check on her, and to ensure that everything was alright. This gave me a sense of security- that if anything happened she was going to be ok. An hour and a half later the challenge was completed, and Penelope had successfully passed. In the weeks to follow, I had to slowly increase the portions (of a cupcake) that Penny ate by ½ every week until she tolerated 1 whole cupcake. This was a breeze; she loved the taste of the cupcake and never had a reaction. I came to understand, at this point, that the treatment that the allergist chose for Penny is called Oral Immunotherapy (OIT). Oral immunotherapy is a treatment that induces the immune system to tolerate a food that a person is currently reacting to. It involves introducing the food that causes the reaction to the person’s system in gradually increasing amounts, with the goal of allowing the person to eventually consume the food without experiencing a reaction.

From now on, Penny had to eat a dairy-full baked good daily. I got creative and baked bread, cakes, brownies, cookies, etc. Eating these baked goods for a month and a half was preparing Penny for the next step: a Yogurt Challenge. Seeing Penny eat things with dairy made me so happy. For 3 years her diet had been restricted, and thinking that she was going to be able to add more things to her diet and potentially eat anything with dairy altogether is pretty exciting.

Her yogurt challenge was scheduled two days after Christmas. A few days before, Penny, Paulo & I went to the grocery store in search of a good vanilla yogurt. Fast-forward 2 days and it was Challenge Day.

Just like the 1st time, we were there early in the morning. This time, I brought her breakfast to eat after the challenge was over. Around 8:30 am, the yogurt challenge began. She had ½ a teaspoon of yogurt. No reactions. Then, about 10-15 minutes later, she had 1 teaspoon of yogurt. Still, no reactions; however, Penny started complaining saying that her stomach hurt because she was hungry. Twenty minutes later, she had a tablespoon of yogurt. This time, a few hives appeared on her face, but after washing her hands and face, the hives went away. Again, according to Penny, the only thing bothering her was that she was hungry. The allergist walked in about 20 minutes after she had the tablespoon of yogurt and since she was cruising through the whole thing, he said that Penny could eat as much as she wanted. She was so happy and she kept saying: “Mommy, this yogurt is so YUMMY!”

Another 20 minutes had gone by. The allergist came back into the office, checked on her and was ready to discharge her with a successful challenge. Then all of a sudden, Penelope developed a cough. The allergist and I kept talking about the next steps to take, and I told him that she wasn’t coughing before, so he said that he was going to keep her in the office for 10 more minutes to see what was going on. I was fine with it: “better safe than sorry”. He also said that Penny could have the breakfast I had brought since she kept complaining about being hungry. She had one bite of her pancake, and then said she didn’t want any more. This was strange. As time passed by, her cough was more frequent, and her energy levels were dropping. She started telling me that she wanted to go home and that she wanted daddy. My husband and son wanted to be there for the challenge, but were both sick with a cold, and decided to wait for us outside.

The nurse came in and stayed with us, checking on Penelope constantly. I asked her to, please, check her lungs for wheezing. She said Penny wasn’t wheezing. At this point, Penny was curled up in a little ball in my lap. Then, as the nurse was going to step out of the room for a second, Penny coughed, but this time at the end of her cough, you could hear the wheezing. The nurse looked at me and asked me if I heard a wheeze. I certainly did. From that moment on, everything felt like it was going downhill: she was in anaphylactic shock. Her wheezing was very loud, and she was struggling to breathe. The nurse called other nurses for help and got the allergist to walk into the office. Penelope was connected to a blood oxygen saturation monitor. My head felt like it was spinning; I kept looking at the monitor: her heart rate kept going up and her oxygen levels kept dropping. I was desperate and felt helpless at the same time.

The allergist looked at Penny and ordered epinephrine be given to her. One of the nurses raced off to another room and came back with a syringe containing the epinephrine. Even though it had only been minutes since she started having the reaction, it felt like hours. Not even a minute after the epinephrine was given to Penny, everything started to change. Her breathing slowly normalized, wheezing subsided and Penny started looking better. Once she started feeling better, she also started having nausea, and eventually threw up the yogurt. At least she didn’t have what was making her sick in her stomach anymore. To be exact, 6 minutes after epinephrine was given her oxygen levels were back to 100%. The doctor ordered the nurse to give her oral steroids to avoid a biphasic reaction. A biphasic reaction occurs anytime from 1 hour to 72 hours after the initial reaction and can happen without any allergen exposure. He also ordered antihistamines because her throat was itching.

By the time my husband was able to make it to the room where we were, Penelope was stable. Everything happened so fast. We left the allergist’s office 4 hours after with instructions to keep giving Penny dairy in baked goods. I’m not going to lie, I was afraid that she was going to have a reaction to baked goods after the severe reaction, but she was fine.  The next step: a Cheese Challenge next month. How do I feel? Scared, but this is the only way we are going to know if her dairy allergy will ever be cured.

This has been one of the most difficult experiences I have ever lived. It left me heartbroken, and it has been difficult even to talk about. I know Penny’s all right and that everything is O.K., but I am still healing. I am grateful to know that epinephrine can save her life if used as the first line of treatment for anaphylaxis, and most importantly, I am hopeful that Penny will be able to surpass this.

 

 

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4 thoughts on “Challenges

  1. BIG hugs from a total stranger… but one who can totally imagine your scenarios; I had new allergies added last year and now I’m super slowly reintroducing foods that were on the “no” list. I have so many that were cut out due to possible sulphite concerns, that luckily the new food introduction can be done safely at home… and I get a go-ahead from my allergist each time first.

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  2. I have to ask- after what your daughter went through and your going to put her through another challenge -because you feel that’s the only way to “cure her?” Aren’t you aware that maybe she won’t be cured and may have to live with dairy allergies for the rest of her life?
    And that’s okay! There’s plenty of options available to your daughter do she can enjoy food without dairy. Cashew milk; almond milk soy milk to name only a few. All are very tasty.
    This craze to cure food allergies is shocking to me. I have a 25 year old daughter still with severe life threatening food allergies. She gets allergy tested every couple of years. And she’s still allergic. She gets it and lives without dairy. But she does fine without dairy. She’s one of the 5 percent who never grew out of her allergies. Your child may still grow out of her allergies before adulthood. But if she doesn’t grow out if then; there are numerous options available. I urge you strongly to reconsider putting her through another challenge. It’s dangerous to her. As you reported in your post; look how the reaction came on-slowly and was life threatening. What happens if one of these reactions happens again when you have maybe dropped her off at school; thinking she’s okay. Will she have an epi-pen? Does she wear a medic-alert bracelet?
    Why do you think it’s imperative to cure her? Being without dairy doesn’t diminish her life. And in your household; get rid of dairy and have everybody in the family drink cashew milk. It’s tasty! Why continue this torture? I’ve been dealing with this for over 25 years and we’ve managed fine. Her dad and I decided at a very young age to take dairy and eggs out of our house ( she was diagnosed at 10 months) to ensure that cross-contamination didnt occur. I learned how to use egg replacer and soy milk. As it turns out it was healthier for both her dad and I in the long run. I strongly suggest that you read up on the topic before something serious happens. By the way you described the onset of her anaphylactic attack; it appears that she has avery severe allergy. Why not wait until she’s older to see if she grows out of it? Statistics show that a majority of kids with food allergies grow out of them as they get older. Some don’t; as my daughter didn’t but quality of life is fine.
    Don’t you think it’s a better approach then putting your child’s life on that line everytine you force her to go through a challenge?? What if it
    doesn’t work? Think it over please.

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    • Hi! Thank you for your concern about my daughter’s health. In previous blog posts I’ve talked about my daughter’s diagnosis and our diet. We’ve been completely dairy free for three years until past November, when Penny was able to ingest dairy in baked goods without any reaction whatsoever.
      We’re not trying to follow any “food allergy cure trend”. There’s nothing crazy about trying to find a cure for her allergies. Quite the opposite, it is human nature to try to nurture and heal others. If there is a chance that we can “cure” one of Penny’s allergies, we can rest assure that we tried anything in our power to minimize the chances of something bad happening to her. My husband and I completely trust Penny’s allergist, and his suggestions about her food allergy testing. We know what our reality is, and right now, even though she had a reaction when having a food challenge, it was in a medical facility with medical supervision (in a controlled environment).
      I know there are different options for us (non-dairy beverages). But as you would know from my previous posts, my daughter is also peanut and tree nut allergic, so sometimes our options are limited to soy and flax. I know that a life without dairy is healthy and viable, but now our reality has changed when Penny started tolerating dairy. Isn’t it awesome? Why not try eliminate the chances of a reaction? For us this is great news.
      We are preparing our daughter to live in the real world, and to live in fear is not quality of life. We take her food allergies with the seriousness it deserves, but at the same time we are exploring ways to make her life easier (of course with her allergists supervision).
      Again thanks for your concern!
      #StaySafe

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