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Sue

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I am a Mom to 2 amazing and fun daughters and wife to a great guy and a wonderful father!

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Kayla
Kayla, my oldest. She is 4 1/2 and is a sweet, loving and silly little girl. She took us 2 ½ years and 3 IVF’s to conceive. Kayla is allergic to dairy. We manage her allergy and work to balance her safety with giving her a normal childhood. Kayla loves to read books and play games - she amazes me every day.


Alysa
Alysa, my youngest. She is 3 years old and is a silly little spitfire. She’s our monkey and loves to climb on everything. She was a “natural” baby, but it was only b/c of my wonderful doctors that we were able to stop an impending miscarriage. Alysa suffers from Acid Reflux Disease and sleep apnea. She may be little, but she has a big personality. She adores her big sister and is so much fun to be around. She keeps me laughing every day.


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Mothers Day 2009

Friday, May 18, 2007
Managing Kayla's Food Allergy
I apologize in advance for the length. And I'm sure I even left some stuff out. Sometimes I forget all the changes we have made - I have grown so accustomed to the way things are.

As a FAM or Food Allergy Mom I get a lot of comments/questions wondering “How I do it”. It’s honestly a question I can’t answer. I just do.

First, let me give a little food allergy background. Food allergies are not like environmental allergies. What I mean by this is that the ONLY “treatment” for food allergies is complete avoidance of the offending food. You can’t take antihistamines and eat whatever you want. The more exposure you have to the food, the worse the reaction can and will get. This progression can happen slowly or very fast. What is an “innocent” reaction one time, can be a life-threatening reaction the next time. Hives (which Kayla gets) is considered a precursor to anaphylactic shock (when you stop breathing). So we live as if she is one exposure away from not being able to breathe – because she very well could be. Most food allergies can be outgrown, but the key to that is also complete avoidance. We obviously take this VERY seriously.

I will admit that when Kayla was first diagnosed I was totally overwhelmed. I had no clue what table food to feed her so for a few months I just kept her on baby food. She was only 9 months old and was perfectly happy with this. Kayla would eat anything and everything out of a jar. So it worked for us. Because I was able to delay table food introduction (aside from wheat toast and crackers), our learning curve was slow in the beginning. Two months after her reaction we were visiting friends whose daughter is 7 months older than Kayla. She was eating cheese doodles. Now, I knew Kayla had a contact reaction, so I just figured I’d follow her around and make sure she didn’t take the cheese doodles. I should have known how fast Toddlers are. Before I could stop her my gf’s daughter touched Kayla’s back with her cheese-doodle-crumbed hand (they were in bathing suits). I immediately cleaned Kayla off, but it was too late – hives broke out on her back. Now I have gotten a lot of surprise from people b/c they think cheese doodles use “fake” cheese. No, they do not – they are real dairy. I knew she’d react to them, but like I said, I was on such a learning curve that I never dreamt to ask that no cheese doodles be put out. I learned my lesson that day. And Kayla has not had contact with dairy since that day (almost 2 years ago) and therefore has had no dairy-related reactions (*knock*on*wood*).

J and I have completely changed our household, what we eat and how we live. You are talking about 2 people who LOVE dairy. I used to drink over 3 gallons of milk a week plus cheese-cheese-cheese! We would have some kind of dairy in every meal. That has all changed. We are not a completely dairy-free household, but we are very close to it. We do have milk in the house, but it is kept in the garage fridge and it is not uncommon for me now to have to throw out spoiled milk. Cheese is a rare treat for us now. We do not allow anyone outside me and J to bring dairy into the house or eat anything dairy in the house. All our parties are dairy-free. J and I won’t eat any dairy unless Kayla is sleeping

After the few months I took to hide behind jarred baby food, I buckled down and did the research I needed to do. And now, it’s just my daily living. I know what names dairy hides behind in ingredient lists (there are many and you can read this list here). I can easily substitute for dairy in baking and cooking. The only item I have not found a suitable substitute for is cheese. I have all sorts of safe foods and snacks that the girls eat. Soy makes this very easy (assuming it’s safe – 50% of dairy allergic kids are also allergic to soy). Kayla drinks soy milk and eats soy yogurt and soy ice cream. She loves tofu lasagna and pizza without cheese. She loves dark chocolate and eats chocolate chip cookies. There are a lot of companies that make all sorts of allergen-safe foods. And when dairy can hide in all kinds of foods like hot dogs, lunch meats, chicken strips, pretzels, even soy cheese etc, this is a wonderful thing. We have to check the ingredients EVERY time we buy something. Manufacturers change their ingredients often, so even if we are buying multiple packages of the same item, we read every box every time we buy. So our grocery shopping time has drastically increased along with our food bill. I also then will check the list when I’m putting it away and then again when I am opening the package. You can never be too careful – we are human and accidents can happen. We also have to worry about cross-contamination. I can only buy her prepackaged lunchmeat, not only so I can read the ingredients but with the deli, the slicer may have touched cheese or put cheese on a meat slicer even if they shouldn't. I make a lot of phone calls to manufacturers checking on ingredients and their cleaning practices for plants or lines that manufacture dairy products.

I am a woman of convenience – I don’t like to return things to a store unless absolutely necessary. I try to do one-stop shopping wherever possible. Kayla’s allergy is nothing if not inconvenient. We now regularly shop at different food stores plus on-line food shopping for more specialty items. And the cost really adds up. Specialty food is expensive, so our budget certainly feels the strain. But, like with anything else we have adjusted and it’s just part of our normal life and routine.

Aside from reacting if she ingests dairy, Kayla is contact-reactive meaning she reacts if it touches her skin. This adds a whole different level to her allergy. We not only have to watch what goes into her mouth, but also what she touches. This means asking friends to wash their kids’ hands at parties before they play with Kayla and washing our hands and mouths after eating anything dairy or anything that could contain dairy. The one time recently that J and I went to the movies, we changed in the garage and put our clothes right in the washing machine. When out, we don’t let anyone touch her without washing up first. This makes taking her places outside the home especially frightening and I will admit that I have stayed away from places and events due to her allergy. I try really hard not to raise her in a bubble, but it’s a really delicate balancing act and a very difficult one. I have still taken her to festivals and shows (Dora, Diego & Elmo) and of course birthday parties. But I also try to limit them and spread them out to limit her potential exposure as much as I can. I have some wonderful friends that make play dates easy as they go out of their way to help accommodate Kayla. And I’ve had others who are not so cooperative forcing me to pull back a bit.

Taking her places does get stressful. I feel a lot of anxiety leading up to parties and outings. I can’t take her to parties by myself since I can’t watch Alysa, the mini Tasmanian Devil and keep an eye on Kayla at all times all at the same time. So if J can not come, then I draft my Mom and if she can’t go, I don’t go. It makes me sad when this happens, but I literally have to be glued to Kayla’s side at all times so she won’t touch something or put something in her mouth. But this too, even the anxiety is a normal part of our lives. Once I even had to leave a play place b/c of their set-up in relation to their snack area. Talk about a heartbreaking moment – Kayla saw where we were and was devastated to leave without playing.

On a day-to-day basis, especially when we are at home, we don’t even feel it anymore. There is no strain or stress. We have our kitchen organized around her needs and it works. We have Benadryl and her epi-pens in our kitchen within easy reach and another set with her things for when we leave the house. She wears a Medic-Alert bracelet in case we can’t talk for her. I know to those that don’t live it everyday it seems like we must go through chaos each day trying to feed her and keep her away from dairy. But it’s really not like that.

Aside from the things you’d expect, like the change in diet and way of life, we have had some other very scary “side effects” from Kayla’s allergy. Had I known then what I know now, I would have kept Kayla on formula when she turned 1. But we put her on soy milk. The problem is soy milk doesn’t have nearly enough fat in it compared to whole milk or formula. So that mixed with the huge learning curve and a Toddler who didn’t want to eat any meats or fat or protein foods coupled with not being able to eat dairy equaled disaster. She entered the zone of FTT or Failure to Thrive from her lack of weight gain. She even faced hospitalization at one point. It was a terrifying time for us. In the end, she ended up in feeding therapy (done by a speech therapist) who helped us get Kayla to eat more foods that she should (she would not go anywhere near formula at that point). We also had her on a calorie supplement for over 1.5 years (another hit to the budget). She was also re-diagnosed with GERD (aka reflux disease) a year ago and her medication made a world of difference. She is no longer on the calorie supplement but we do give her Flax Seed Oil daily to increase her fat intake. But comparably speaking, - she now eats better than other toddlers I know. She has a wide range of meats that she eats and eats quite a few veggies (although these come slower). And she will usually try anything even if she then tells me “I don’t like it Mommy. Kayla not have to eat that”. It was a long road, but she is now a healthy 26 pounds (yes, she’s still thin) and looks healthy. And that’s all a Mother can ask for.

At this point, I’ll bet you’re wondering what we do with Alysa. As far as we know Alysa has no food allergies. But…up to this point, she has not had dairy. She started out on milk-based formula, but her reflux and need for the hypoallergenic formula was, in some ways, a good thing as with how much she spit up there would have been no way to manage it with Kayla. Kayla has been spit up on numerous times. We held off on milk introduction due to Kayla’s allergy and Alysa’s higher chance of food allergies. We were even more conservative with her food introduction. Because Alysa still spit up a lot at the age of 1 year, we switched her to a soy toddler formula. I could not risk her spitting up whole milk on Kayla. So to this day, Alysa is still dairy-free. But with Kayla’s problems with poor weight gain, I did not want to give Alysa soy milk. At this point, I can’t say when I will introduce Alysa to dairy. I’d like to start giving her cheese, etc but Kayla thinks nothing of disobeying J and me and climbing across the kitchen table to grab whatever Alysa has in front of her. So we are nervous about it. But I know if Kayla does not outgrow this, that day will have to come. When Alysa has to come off the formula, I don’t want to jeopardize her health and growth by giving her something that lacks what she needs.

Like any crisis/life changing event, Kayla’s food allergy has changed me. I am much more aware of what I and my girls eat when out of the house. I can’t avoid bringing any food out of the house that contains one of the Top 8 Allergens, but I can do what I can to limit the risk of exposure to another child or person. I won’t let them drink soy milk outside of the house or car. I bring water only into places, unless it’s a restaurant (which is a VERY rare occurance in our home). I only bring foods that do not break apart easily to limit the crumbs. I’ll bring fruit or raisins or stick with cheerios or teddy grahams instead of large crackers. And of course, I am extremely conscious of them dropping anything. I would never dream of leaving food on the ground like I have seen so many mothers do. I can’t manage all potential food allergens, but I hope that I make it easier for other Moms and their food allergic kids. And even when I’m not at home and not with Kayla, I will find myself checking the ingredients lists of foods that I am eating. It is just a natural part of dealing with food for us.

At this point with her being only 2 ½, Kayla doesn’t know what she is missing. She knows she is allergic to dairy and that she wears an “allergy bracelet”, but she doesn’t understand. We tell her dairy makes her sick, but it’s an abstract concept for her. In her world, she eats, cake and cupcakes and ice cream and drinks soy milk. She can have chocolate and hot dogs and lunchmeat (only prepackaged) like other kids. She just doesn’t know what we go through to make sure those things are safe for her. And when we do go to parties, I make sure to bring similar safe foods to what they are having and a safe cupcake for her. “Thanks” to her favorite cartoon Dora, she does know what an Ice Cream Truck is. And the few times she’s heard him come around this spring, she has gotten excited. So we may have some difficulty with that one. I know that won’t be the last time she will feel the strain of her allergy. I just hope that J and I do our job right and raise her to be strong and understand her food allergies so she is able to take care of herself as she gains more and more independence. And I hope that her limitations have the smallest emotional and mental impact on her as possible.


posted at 4:10 PM  
  8 comments



8 Comments:
At 5:16 PM, Blogger ChupieandJ'smama said...

I don't know where your comfort level is, but on our ice cream truck the pre packaged Dora pop and Sponge Bob pop are from Popsicle and they are safe. I called and drilled the company. Jason is not as allergic to dairy as Kayla, but he's eaten them with no problem. Just a thought incase she really freaks about it. Our ice cream guy was really great about it and let me read all the labels.

 
At 7:39 PM, Blogger Christine said...

Great post, Doodle. It really explains a lot. This has been a good series for you to write.

 
At 9:15 PM, Blogger Jennisa said...

I am SO glad you wrote this. I was telling my husband parts of it (like having to change in the garage before going inside) and his comment was "And we thought WE had it bad". It's the truth Sue. Her being contact reactive is a whole new ball game, and I would be the SAME way you are with her. I do understand how it's just a part of your life now. Let's just keep praying our girls will outgrow these allergies and be able to have mac and cheese like the rest of their friends!

 
At 12:05 AM, Anonymous Theresa Marie said...

WOW - thank you for writing this! I can't imagine what it's like to have to deal with contact reactive toddler. You are doing a terrific job though and I appreciate your thoughtfulness to the other top allergens while in public. Your thinking certainly changes doesn't it? Thanks again for making more people aware of this!

 
At 6:30 AM, Blogger IRENE said...

My daughter was diagnosed with dairy allergy when 14 days old, so I sympathise with what you describe. It is true that it hard at times. However, thanks to the "green" revolution we are experiencing, things are getting easier foodwise. I am perfectly happy for my daughter to be vegan or even raw foody. In fact we could all benefit by following a vegan / raw diet.
I find the hardest part is when dealing with socialising. Oddly enough , the worst influence are my in laws who believe that "just a little bite is OK" and try to sneak in treats every time they visit (that's for 10 days each month). I am outraged, but I am learning to cope (pray, breathe, grab food before they give it to her, remember never to leave her alone with them).
But, let me tell you,things do get better over time. We have tried to make her feel she is a preacher of God's natural, living, healthy food to a social environment who is dependent on processed deadly food.
She is now 10 years old, and she is doing OK. I make sure I make all of her cakes, etc., so it is more work, but I blessed God for her every day I see her smile.
I am so glad you wrote this post, and grateful I came to your page.
Blessings.

 
At 7:30 AM, Anonymous Kathy said...

Sue:

I see what you and Jerome go through and I am so thankful that you both are willing to "jump through hoops" to keep Kayla safe.

Your girls are very lucky.

Love you,

Mom :)

 
At 5:18 PM, Blogger Michelle said...

Thanks so much for sharing what it's like to live a day in your life! Sometimes I get that "I don't know how you do it" type question too and really the answer is "you just do" just because they are your child (I know totally different situations, but same sentiments I think). I am a huge dairy consumer myself, so I can only imagine how it's been for you and J to almost go dairy-free yourselves! I'm amazed at some of the products out there that contain dairy.

 
At 3:31 PM, Blogger Jess Poskozim said...

Thank you for this. You and the other mom bloggers are a huge inspiration to me and have helped me a lot. We just found out 2 months ago about my daughter's allergy and I feel like I'm still at the bottom of the learning curve.

Thank you for all the wonderful information and inspiration!

 

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