Saylor is almost 5. We have been trying to figure out this Allergy world for over 4 years now. And let me tell you, it is a hard world to navigate. I know there are many out there that are new to the allergy world and are overwhelmed with figuring everything out. I have found that this is an ongoing process. There is a learning curve with this and there is a lot to figure out. I do not have all the answers or anywhere close to it. I just want to share my experiences as well as ideas, tips and recipes that have helped us. In doing this I am going to begin from the beginning.
When Saylor was 8 months old we gave her a bottle of formula to try. She had formula maybe once before but had been purely breastfed with rice cereal and some other baby foods up until this point. We gave her the bottle as we were driving for an hour. When we reached our destination Saylor's face had swollen up all around her eyes especially. She had hives all over her face and arms. We were in the mountains but knew that she needed to be seen by a doctor. So we drove a half hour to an urgent care. We were sure it was an allergic reaction but we didn't know what it was to. The doctor at the insta care treated her for an allergic reaction. We asked him if it could have been the formula. He said no, that if it was something she had eaten the hives would have been all over her body. I have since found out that this is not true. The biggest thing I have found out with allergies, is there is a lot that is not understood. A lot that is not known. The formula had gotten all over her arms and face during the drive so to me it made sense that she reacted to the formula, but we were not sure. She recovered with steroid and zyrtec and we went on with our life.
The next reaction she had was to yogurt. I fed her yogurt, laid her down for a nap and when she woke up she had done the same thing. Hives on her face and puffy eyes. She then started throwing up to a lot of foods. Cookies, brownies, tootsie roll pops, etc. I started to wonder about chocolate. I thought that she was allergic to something but didn't know what for sure. I just kept hoping that if she was allergic to something it was mild. I scheduled an appointment with an allergist and got confirmation that she was severely allergic to milk, eggs, peanuts, tree nuts, and sesame seed. This was a lot to take in at once. I was not the most informed on allergies and in my mind the peanut allergy scared me, but I figured the milk and egg allergy wasn't that big of a deal. I thought that she would get a stomach ache and throw up or something. I didn't realize that a milk allergy can be anaphylactic and just as scary as a peanut allergy. Something I would have liked to have known as soon as I learned about her allergies was Peanuts is not the only Severe Life threatening allergy out there. I have learned this now, but I still find it hard to get that point across to others. When I tell people she is allergic to milk I don't think they realize how bad. I then tell them that she reacts to milk like some people react to peanuts, that seems to get the point across to people to realize that it is a big deal.
After I found out about Saylor's allergies I was extremely overwhelmed with all that I had to do now. Read labels, learn how labels are written, inform people about her allergies, don't let anyone feed her anything without asking me, don't let her touch anything she is allergic to because she is contact reactive (meaning she reacts bad just to touching it) learn how to use an epi pen, and not be scared to use it, teach others to use an epi pen, learn about which medicine to give her when and how much. Things that started to overwhelm me later were things like; cross contamination, is food made on the same equipment as her allergies, and what is the companies allergy protocols?, How do companies label for allergies, if it says "may contain" should she not eat it? If it doesn't say "may contain" is it SaylorSafe? Which companies do I trust? What food do I feed her? How do I incorporate SaylorSafe food into our diet while still letting others in the family eat what they are used to and want and need. How do I keep up on recalls for food contaminated with her allergens, and how do I trust any food? How do I let her be a kid but also keep her safe? All of this is completely overwhelming!! I soon realized I had to start getting informed in this allergy world but I also needed to take a step back and Breathe. This is an ongoing process and I have to take it one day at a time.
As it has been 4 years now and I have been taking it one day at a time. I can tell you that things are less overwhelming. It does get easier. That doesn't mean that I am not worried about her and the things that she eats on a daily basis. But it does mean that I know more now. I am well informed. I know what works for us and I have ways of handling different situations. Accidents still happen and I do still fear bad reactions. So I still take it one day at a time. I do every thing in my power to keep her safe while still creating a normal life for her, and then I PRAY. I pray for help from my Heavenly Father who I know loves Saylor and me so very much. I pray that he can help her when I cannot. And I know he does. I know that I have help with this situation. And for that I am eternally grateful.
So for those of you who are just starting down this path of food allergies, hang in there. It does get easier. There are days were there are setbacks for sure. I have them regularly where I break down about it. But I pick myself up and realize I do what I can and I take it one day at a time.
Helpful sites
ufan
http://snacksafely.com
allergycookie.com
utah food allergy group on Facebook
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