Ugh

Well it has been just over a month since I was diagnosed with allergies. A seems to not be growing out of hers, which is very frustrating, since I had some hope she was. She had a reaction that seemed out of the blue right after I had one of those "what else could go wrong with this breakfast making" episodes that involved eggs. I can only assume she got exposed to something that wasn't cleaned off well enough in the aftermath. She also seems to break out from wheat, which I gave her with her allergist's permission. I have given up on milk, soy, and peanuts, although I am still struggling to figure out how to balance that with real life. It isn't a problem at home really, I mean, I was already making 3 different meals each mealtime to accommodate our needs, so what is one more. But eating at other people's homes is a problem. We have to pretty much refuse everything offered and I feel like I am so rude. People use food to show feelings - whether it is welcoming you, loving you, showing off to you, whatever. I have to reject these offers of emotion and it doesn't always go over well. I feel bad about it, and I am an emotional eater, but now I can only eat vegetables (because I have oral allergy syndrome to fruit associated with the protein from birch trees - apples, pears, nectarines, etc) To make it worse, people are enthusiastically asking me if I am losing weight. Do I seem to need that really bad? Anyway, I have seriously considered forgetting it, at least the milk allergy, and just dealing with the unpleasant side effects, but not only is that unpleasant, but what kind of an example is that for A? How can I tell her to take care of herself and avoid things that her body rejects, and not do the same myself? Putting off what I want now (peanut butter cream pie), in order to bring about something good later (not feeling sick, better health), seems to be a good thing. But man it is hard to give up the immediate gratification. I think I will come out of this a much more disciplined person. Except I will not come out of this at all. Maybe I should consider some of those miracle health supplements - oh, yeah, everything contains soy, so doing so could kill me. I guess I will just have to live with it.

You have got to be kidding me!

So. Turns out I have food allergies. I knew in theory that adults can develop them, but when I started to notice that my throat and mouth itched and burned after eating soy milk, I figured it was a strange fluke. My solution - stop drinking soy milk. As a vegetarian, a lot of my diet is soy based, I couldn't be allergic. That would be terribly inconvenient. So I ignored it until I was making soy milk from scratch for A and tasted it and had a huge reaction. I decided I better go and have it tested. I did. I found out I am allergic to soy, milk, and peanuts. The allergies are not life threatening at this point, but the allergist made it clear that the soy will become life threatening if I don't start avoiding it now. Amy is allergic to wheat, eggs, milk, and tree nuts and I am allergic to soy, milk, and peanuts. And to top it all off, we are vegetarian. I can't tell you how bad I want ice cream. It is so frustrating because I know it won't kill me, but I saw my whole arm react to a skin prick. I mean - the doctor ran over and checked my shoulders because they were turning so red when he pricked me near my wrist. Dad says I need a second opinion. Unfortunately, my own body's reaction is the only opinion that matters and I have seen that first hand. I don't know how I am going to deal with it. I am inclined to ignore it, but it isn't like it was just a random thing the doctor said. I saw it with my own eyes. I am very frustrated. It is like the only thing that brought me relief from the constant strain of A's allergies was being able to eat whatever I wanted on the few occasions she was not with me, but now...

The trouble with Rice

A has been having reactions that come and go every couple days. I convince myself rice is the culprit, then talk myself out of it, the into it, then out of it, etc. I have tried to get her into the allergist twice for a skin prick, but I live 120 miles away and the are not available when I am. So now I have tried to get her in to see a different allergist, but he is busy. Today I am going to try yet another, but if it isn't rice that is the problem, then what is it? A rice allergy would just about crush me, but it would be better to know what it is than have it be a mystery. In the meantime, she scratches her newly formed excema until it bleeds, saying, "owy, owy, mommy." If that doesn't break my heart I don't know what will. I am causing the owy by giving her something she is allergic to - but what is it? She is supposed to be growing out of her allergies - not into them. And while we are talking about allergies, let me say that the new labeling law, while keeping her safer, has made my life difficult. I can't find soynuts not made in a facility with tree nuts. They always have been of course, but they weren't labeled as such until now. So, now she likes them, but I can't give them to her. I can't even find any online! Yeah, online - where you can find anything under then sun - no safe soy nuts. Argh.

Special Needs Child?

My family and I recently moved 120 miles south of the relatively large city we were from to a small town of roughly 12,000 people. When we were deciding to move here, I went to the local public school to see about signing the kids up for ECFE. The person I talked to was not helpful when I talked about A's allergies and looked at me like I was nuts when I told her W should be careful about what he eats and what he brings home with him. Seeing that she was not up to date on food allergy awareness, I asked her for the principal's number to see about the school's policy and she refused to give it to me. I couldn't believe it. Needless to say, I enrolled W in the local private school and A doesn't get to go to ECFE. Since then, I have talked to many people in town about their thoughts about the public school's attitude toward food allergies. Every one of them has related a different story about a child she knew that was given the forbidden food by accident by a teacher who was fully aware, but just forgot. This is a small town. I was surprised that anyone even new anything about people with food allergies, much less did I expect they would all know about food allergies ignored by the public school. Then, a reporter came to our house and wrote an article about A's allergies. In doing so, she spoke to the school district's nurse, who was quoted as saying that most kids' allergies aren't that severe by the time they reach school. (Which is true, but saying that make the kids whose allergies are that severe seem less severe.) So I was talking to my sister about how badly I wanted to take A to ECFE, as W loved it when he was little and I thought she would to. She just shrugged and said, "You have a special needs child." It was like a slap on the face. True, A needs special precautions to be safe, but should that mean she has to live life without the benefits given to other children? Suddenly special needs has a whole new meaning to me. No longer is it some distant problem other parents have. No longer is the special needs child a slight enigma. Now she is my child. A child like any other. A beautiful little girl, one with a temper, one who stands up for herself, and one who deserves every chance her brother gets.

At least it's not peanuts - that's the bad one.

So my family just moved to a town far removed (well, only 2 hours, but the lifestyle here is very different), and in doing so, I have had the opportunity to tell many people that A has food allergies. I am not kidding you when I say that 98% of them has said, "At least she's not allergic to peanuts, that is the bad one." I may have mentioned in a past entry that this is a pet peeve of mine, but I would like to remind everyone that if a peanut will kill you and a walnut will kill you they are both bad! I understand that most people have only heard about peanuts being bad and it is really a case of publicity for peanut allergy causing the society to assume that if they know a little about something then they know a lot, but it is difficult none the less. To battle this problem, I have conceived of starting a support group for food allergy and sensitivity sufferers in the area. I have no idea if anyone will be interested, or if I even have the wherewithal to coordinate one of these, but I have to try - someone has too. There is no reason why small towns have to pose a danger to my child or anyone else's, just because there is a lack of information out there. Plus, if we form a group, we sound official and then we can petition for things around town - like a natural foods section at the grocery store. Apparently I need a medical adviser and all sorts of other things that seem difficult, but are probably a good idea. So, wish me luck - I am about to take a leap and do something out of my "comfort zone."

Excuse me, what?

A had her 15 month checkup and I asked the doctor if we could do some blood work to find out if we could give her wheat yet, since her weight is continuing to drop in the percentile charts (she was 95th at birth and has steadily dropped to now 20th). The blood test come back showing that her numbers have not gone down for wheat, and they have gone up for milk and gluten, and down for egg. But when the doctor calls to tell me this, she says, A is not allergic to food, except tree nuts. She can have these, she said, as they are not "significant" allergies. She actually tells me that A will "only get sick" if she eats them. I am appalled at this. Why would I want her to get sick? And I didn't have her checked for allergies on a whim for Pete's sake - she was reacting to the food. I called her allergist who assured me that these were significant allergies, although if I wanted too I could try her on wheat and see what happened. (I tried her, she reacted.) Her class levels for these foods are on the low side, but the allergist said that the numbers essentially mean nothing - low numbers can still cause reactions. Her nut allergies were not tested, as she is unlikely to ever outgrow them. I am furious with her doctor for acting as though these allergies are nothing and indicating that I changed my entire life and put my child at nutritional risk for no reason. While the allergist assured me that I was not doing this for no reason and the fact that she did react indicates that she shouldn't eat these foods, I feel betrayed by the pediatrician, who up until now I have really respected.

Cabin in the Woods

Imagine you are in a cabin in the woods with your tree nut allergic child and several other people for a birthday party. The cake is pulled out and it is revealed that there are tree nuts on the cake for decoration. The cake server/birthday celebrant is the allergic child's grandmother. She laughs and seems surprised by the nuts, but not concerned about their lethal nature to her grandchild. She then serves a three year old in attendance a slice with nuts on it. He picks up the cake and eats it with his hands, spilling crumbs all over the floor that the allergic child is walking in. The cabin is about 30 feet square, and occupied by 15 people, so there is not much room to move away. No one even seemed the slightest bit concerned. You are miles from the nearest hospital.

I sat in horror as this happened to me today. I was required by family politics (they are my in-laws), to smile and be polite, but I wanted to scream and gather up my family and run from the cabin and the people who just don't get it. The what-ifs flooded my mind as I tried to control the situation without ruining the time for all the other people.

After dinner, when food was put away and my child was a safe as possible, the assembled parties began discussing how unaware people can be about food allergies and how some people just don't understand its seriousness. I wanted to hold up a mirror to them and say, "I will show you who is unaware. Look here and see who can put a child in danger of death without a seconds thought."