Wednesday, November 16, 2011
Year after year his numbers stayed the same. When they finally did decline his skin test was still huge. Once that diminished we failed oral challenges two years in a row. We were finally given permission to try milk baked in goods but by this time the fear had built in. Yes, he could tolerate baked milk, he just didn't want to go there.
Today we had an oral challenge to cheese at the allergist. At he age of 9 1/2 he finally passed. So do we go home and celebrate with a plethora of cheese products. No. The fear is still there. He also says he doesn't like the taste. Nonetheless, it's a dream come true. Something I had almost given up hope on. At this point though it is not the glorious feeling like the heavens had finally shone bright light upon us that I had expected. It's more of a "huh, how 'bout that." I guess because it doesn't mean that Max is going to jump into eating mac n cheese and grilled cheese sandwiches. This too will be a gradual process. It may still be years before we walk into a pizza joint and get the double cheese stuffed crust pizza. Dairy went out of our life suddenly with hives and vomiting and swollen faces. It will enter quietly and gradually they way change usually happens.
Sunday, October 16, 2011
In my heat of the moment angry phase, I will say "Why do I have to spare his feelings?" Or the feelings of the Mom-who-brings-snacks-my-son-can't-have-and-then-acts-the-martyr as she "discreetly" says to her friend "Well, goldfish are what every Mom brings". All I said is "Thank you for letting me read the label. No, he can't have those." At this point I have to say, your feelings about this situation are YOUR feelings. I'm sorry he has food allergies and it is inconvenient to you in some way. Though I have to wonder WHAT exactly is the inconvenience. That he has them? That he can't have what you proposed? I'm sorry. I HAVE NOT asked you to change anything. ALL I have said is he can't have those or he can't come to that. It is not a judgement on you IT IS A FACT OF OUR LIVES. That is it. It is what we do everyday. Avoid. Everyday. Despite soccer games or end of the season celebrations. Sorry I made you feel something.
So my real email read "Owen is allergic to dairy (and eggs and sunflower seeds). So we won't be at the Dairy Queen festivities. You've been a great coach this season. Thanks for keeping the little guys motivated."
*Breathe out* I had forgotten how therapeutic my blog is for me. Just had to get that little vent out.
Tuesday, October 11, 2011
The main thing she explained was conformational versus linear allergy in children with cow's milk allergy. Apparently, studies have been done regarding children who can tolerate highly heated cow's milk products such as those in baked goods. It has to do with espitopes attaching to proteins. And though I understood her explanation at the time I'm not going to be able to explain it in plain English. The gist of it is that they have discovered that those allergic to milk can be split into two groups; those with conformational allergy (able to tolerate highly heated milk) and those with linear allergy (those who can't) AND at sometime in the not so far future they hope to be able to TEST people to see which they are.
I had wondered what the shift in allergists' views had been as it seemed suddenly that not only was Max given the go-ahead on trying baked milk products but so were a number of food allergy families that I know of. It seems to me with this study it isn't just that our children are now tolerant, it may be that they always were and we just didn't know it.
Food allergy research still has a long way to go. But maybe we are making some head way.
Here's the only online info I could find on this study.
Sunday, September 25, 2011
Our first visit to the allergist was Friday. We started with Owen, which in hindsight was part of our mistake. So by the time we had waited in the lobby for 35 minutes (Max and Owen are not good waiters) I was already annoyed. Which was apparently evident as the nurse immediately started to explain that they were running behind. Which leads me to our second mistake. I had been figuring the appointment to take an hour and half tops and had scheduled Max's first drum lesson for later in the afternoon. You are right I shouldn't have scheduled anything else that afternoon. I don't know what I was thinking. I guess part of it is that food allergies are so much of a part of my life, I just expected I would go in there, say test for this and this and this. His asthma seems fine right now. Read through his records and catch yourself up. I wasn't counting on needing to go through ALL of the history AND being questioned about it. I guess on my part another mistake.
She wanted to start with his asthma history and it quickly became evident that she didn't think we were doing enough or that he had been monitored properly. They wanted to do various lung function tests and add an albuterol inhaler. They also think he needs one at school. Though he never has needed one in the past.
As we started in on the food allergy history, I felt I was put on the defensive immediately with her questioning why I had even had him tested to begin with. Throughout she kept interrupting (to go along with all the times my two children were interrupting). I kept losing my train of thought and felt myself getting flustered and nervous. But when she interrupted me to explain how RAST testing doesn't indicate severity and history is the true indicator of a food allergy I had to pause. She then asked me if I had ever had to use the Epi-pen. I said no the one time Owen needed it we were at the allergist and she did it. Her reply was "Okay then we will need to do a demonstration for you before you leave today." I was taken a back. Really? I have been raising children with food allergies for 9 years and you think you need to demonstrate the Epi-pen for me? I exploded a little in a flustered unproductive not very helpful way and explained that after 9 years a knew a lot about food allergies indicating Max and his somewhat healthy 9 year old self. And that we had seen some of the best allergists on the east coast. I could kick myself for that. I SO don't want to be east coast and it may have seemed like I played a "the doctors are better on the east coast" card. Friday night I lay in bed going over how I could have done it all better. Because you see, we have moved to a much smaller pond and this is the only pediatric allergist in it. We may be stuck with each other. Which means I need to do a better job building this relationship. And at the same time she needs to recognize that I know what I am doing.
I know we are new to her but we are not new to food allergies. When I said I had never had to use the Epi-pen perhaps she should have replied "Wow, then you've done a great job on managing these kids food allergies." Doctors need to realize that as parents of children with special circumstances we live with it for 24/7. We manage their food allergies everyday and in that educate ourselves over and over. Not to mention demonstrate that damn Epi-pen for every grandparent, babysitter, teacher, parents of their friends, coaches, etc. Anyone who is alone for any length of time with our kids get a demonstration. Give us some credit. We already do know something.
Saturday, July 31, 2010
It's the lady at the pool that practically pushes my child aside to go up the steps. No excuse me or even eye contact even though we are the only other people in the pool. Its the woman at the grocery store berating the lady waiting in her car for her grocery delivery because she has been parked there too long and the other woman wants her to move. No, please could you move up or can I get in here. Just a barrage of verbal abuse.
It's also the lack of compassion from others when dealing with those with food allergies. Its the parents of another child in my son's class. As the teacher is explaining that there is one child in the class with severe food allergies the parent spews out "So everyone else has to suffer because of one child." If he had let the teacher finish he would have realized that her comments would have ended in "You can still bring what you want and the parent of the food allergic child will provide a separate snack."
It's the same teacher a month later refusing to change her plans to make cookies using both milk and eggs in the classroom, even though I have offered to make cookie dough for the whole class, because "We do not deprive the other children because of one child." They had made no other plan for my child, he was just not going to be allowed to participate in the cookie making.
It's a woman in one of my former playgroups that would continuously bring unsafe snacks not just to our playgroups but to my house. An eggy milk, based dip one time. A snickers cheesecake to another. That time the playgroup wasn't at my house it was at another members house who had just found out her son had a severe peanut allergy. I could never understand if she just didn't get it or just didn't care.
It is the Washington Post printing an editorial response (in very large print) to an article about peanut free sections at baseball games. "I'll give up my peanut butter and jelly sandwich when you pry it from my cold, dead hands."
I realize that all these incidents may seem very minor. But I have dozens more. They one by one add up and make me wary of people's reactions to me, to my children and to their food allergies. I honestly didn't make up their problems or cause them or want to even burden YOU with them. But we all live in this world together and we all, in one way of the other, too often look the other way and say "That is not my problem." We lack compassion for another person's burdens and instead focus on how their problem encroaches upon my rights.
I am not asking you to change the way you live. But if you are my neighbor, I think it is kind if you look me in the eye and say hello. If you are my son's teacher, I expect you to make him feel included and keep him out of dangers way. If you are parents of other kids at my children's' school I wish you could see us as part of your community and not as "the child who deprives others."
Just walk a day in my shoes. I am striving to walk a day in yours.
Thursday, July 29, 2010
I always post Max's birthday cake. I think I outdid myself this year. I started working with fondant for Owen's birthday last January and made him a Mighty Mac cake.
Not bad for my first attempt.
Well, leave it to Max to up the anti. He immediately started talking cakes and would watch any cake show I put on with rapt attention. (He also likes design shows like Trading Spaces Boys and Girls). Problem was the cakes he wanted me to make sounded impossible. In the end we found a picture of a dragon in one of his books and settled on that.
I need to work on taste though. When I add a lot of food coloring to the marshmellow fondant it changes the taste and not in a good way. Also I have been using my basic chocolate cake recipe that I don't think tastes as good without my chocoloate frosting recipe. I'd like to make really tasty good looking cakes. Not that this one was bad but I'm always striving for perfection.
Thursday, July 22, 2010
I also might have over scheduled myself. Beside being enrolled in an American Montessori Society training program and working full time I was the treasurer for our HOA (thankless job) and taught my son's 1st grade catechism class (good Lord do first graders like to chat).
I found it particularly hard on the food allergy aspects of our life. We don't eat out so food prep sometimes seemed insurmountable. Both Max and Owen were in school which is full of "fun" food laden events many of which I was informed about the day beforehand. This was troublesome to me on a few fronts. 1). I work at the same place they go to school. It would not be impossible to give me a heads up more than 12 hours before the event. 2). I spent many blurry eyed evenings making baked goods. I began to feel resentful and angry but with food allergies it is hard to know where to direct that resentment and anger. 3). Conflicts particularly with Owen's teachers over food allergy issues led to a stressful working environment for me as they tended to see me not as a parent but as a co-worker.
We are halfway through the summer. Halfway to going back to school (for the kids, I completed my training) and work for me. And I'm not looking forward to it. I LOVE Montessori. I am a really good teacher. But it was a lot this year. I don't know if I can do it again.
It can only get better right?