This marks my initial plunge into the blogging medium. I’ve been hesitant to start writing for several reasons. The main two are that I’m worried to come across narcissistic in many ways, and my writing has suffered during the (some number bigger than I care to admit)years since college.,
However, the main purpose for this blog would be to educate, share experiences, and offer encouragement to other mothers, caretakers, family members and friends of people with multiple, severe allergies.
Tonight seemed like the perfect time for me to start. One event, albeit small, kind of triggered me to just go for it.
We were eating dinner out with my son and husband and good friends. Our order for my son came out wrong twice, and we ended up cancelling it alltogether. My son M* has many allergies, almost all of which are food related, and all cause severe reactions, ranging from hives to projectile vomiting and/or anaphalactic reaction. Our hope is that he will outgrow them in time, but our medical providers at this point can not give us a definite answer.
My experience with allergies has been enlightening, frustrating, infuriating, made me feel helpless, ignorant and finally empowered.
When my sweet son, who is now a healthy and happy 2 1/2 year old, was about 4 months old, he began experiencing severe full-body rashes and itching combined with colic. True, crying all day and all night colic. I began noticing a pattern with his discomfort. I presented my idea to my pediatrician at our 5 month checkup, and suggested that he may have a milk allergy. I was told there was a very small chance of that, since he was very young, and was breast fed. Being a first time mom, I had no idea how very key it is to follow mommy instincts. So I then took the advice of the doctors, which was to treat his very uncomfortable, very unpleasant excema, and try to keep his tummy calm by feeding often, making sure he was swaddled, etc. We tried every trick in the book to no avail.
By the time his 6 month checkup came around, I asked again if we could just try something to see if he possibly had a milk allergy. They told me it would take up to 6 weeks to clear out of his system if it was dairy related, but I was welcome to try it, and to switch him to formula to see if that would help. SO…Valentine’s Day evening my husband and I were out for a nice dinner, and took M* with us, since he would have cried for anyone the entire time, due to his discomfort and belly pain. Dinner went well, candlelight, soft music…and then we ordered dessert. Thinking to savor a few romantic moments, we chose then to try out formula. He took the bottle like a pro, since he had had a few pumped breastmilk bottles before. Just as my husband readjusted him to burp him and put him back in his seat, the dessert showed up. As did the projectile vomiting. And then we knew, we had to do something.
I started down the path of eliminating foods from my diet one at a time. I took out dairy completely for 2 weeks, and lo and behold, the excema started clearing. I started noticing more clear patches, and if anyone came for a visit and didn’t wash their hands after handling or eating dairy, and either held him or kissed him, he would get a red, blotchy patch on his face. Eggs followed quickly in the “foods never to be had again” category. When I had wheat, he had loose bowel movements the following day. Every food that he was allergic to slowly came to light, and I removed completely from my diet. My one regret is that I couldn’t have breastfed longer, but I was wearing out quickly, and didn’t have enough knowledge of the topic at that time to compensate for my dietary changes. We made it to 9 months breastfeeding, and then our pediatrician gave him soy formula, since Nutramigen was not only expensive, but my M* was old enough to know that THAT stuff was nasty, no thank you!
My little family relocated when M* was about a year old. We moved to a wonderful, quiet town very much like my hometown. We settled in happily, only to have M* contract RSV within the first two months, and pneumonia twice in the following month. Our second pediatrician later, I was taken seriously and not disregarded as a crazed first-time mother. We went for allergy testing, and were surprised and relieved to know that we had some answers.
His allergies are now under control, since they are known. We have a plan of action, always travel with Benadryl, an Epi Pen and Gluten Free, Dairy Free, Egg Free, Casein Free, Nut Free, Sesame Free snacks and a sense of humor. He is allergic to wheat (though not truly gluten intolerant…as I learned, there is a difference), soy (yep…the very same soy that was in the formula…:headsmack:), eggs, peanuts, walnuts, brazil nuts, dairy (which is in just about everything, and is different than lactose intolerence), sesame, shrimp, mildew, dogs, cats…and a few others that are just random and don’t really appear in much. I believe he also has mild belly discomfort after the consumption of certain dyes.
SO…today we went to a chain restaurant where we have often eaten together. I generally have a regular meal that contains butter and shrimp, and we always order a plain hamburger (no bun, no cheese, no condiments) and fries. We know the restaurants that carry safe fries, that are unbreaded, and that do not use peanut oil. This particular dining establishment is always very accomodating to our needs. Tonight, when I placed my order for M*, the server came back with the burger on a bun. This isn’t a huge issue usually, since contact with wheat is not a problem for him, just the consumption. I order it without just so they don’t waste the bun. BUT tonight when it got to the table, the bun had very clearly been grilled with butter. I asked the server if she could please have them refire the burger, as it would make him break out into hives immediately and could cause breathing issues. She was apologetic. When she returned to the table, she said that the cook told her to cancel the burger, as they COAT their grills with butter before anything is cooked.
Dear readers, I have ordered many times here, stressing that he has a severe dairy allergy. He has always had a few hives after we eat there, but I had blamed it on my own meal, thinking perhaps my own inattentive actions had somehow contaminated his food. Now I know that I need to be very specific, and ask, ask, ask. It may annoy the server or my fellow diners, but my child’s life is not worth the risk. I almost feel back to square one. It was a rookie mistake to trust that people know what I mean by “dairy” allergy.
I hope with this blog to continue to share my experiences of navigating the fields of playgroups, public eating, cooking, breastfeeding a child with allergies, family acceptance and education, self education, doctor relationships and respect, and -very soon- sending a child to school with more than 5 common allergies. God bless their little sharing hearts…
Let me know what you would like to read about regarding this topic, and I will oblige, most likely!