Dreams Coming True

I always had this fantasy of the day Max would be able to eat dairy.  I saw it as a sudden thing.  We would go into the allergist.  He would pass an oral challenge then we would go by all kinds of dairy products take him to his school and have a class dairy party.

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.

Ticket Please, One Roller Coaster Ride?

I've been having many food allergy annoyances lately from calling Owen's allergist and feeling like she didn't even pick up his medical chart to look at before giving me an answer to Max have an accidental exposure at the school which I have praised and lauded about its allergy awareness. Not to mention Joel Steins ridiculous op-ed in the LA Times. But Owen sans nap means Mommy sans types. My husband got me an I-phone so I could blog from that but seriously have you tried typing on an I-phone?

But, anywho, tomorrow starts the roller coaster ride, the skin test, the blood test and (cross fingers!) the oral challenge! Max's exposure at school was to a crouton containing dairy and.....nothing happened. Though he kept down playing it so much I don't know...I know he so wants to outgrow his allergies. About a month or so ago, it occurred to him "Mommy, what if I never outgrow my allergies." I told him that that was a possibility and that it sucks. Then last week he said "Mommy, my teacher said I have a life-threatening food allergy." I asked about the situation and if he had any questions and he dropped the subject. I think he wants to know and he doesn't. He's so sensitive and intuitive at the same time.

So cross your fingers, say a prayer, milk would be nice to outgrow. A drop in egg would be a nice too though I think outgrowing would be a stretch at this point. Just the indication that it's going that way is my hope. And well, nuts, we'll just assume they stay around. I don't need a miracle. Prayers, deep thoughts, good karma, send it all Max's way tomorrow.

You Could Die

Max and David headed off on their camping trip this weekend with much food supplied by Mommy, two epi-pens, Benedryl, How to Read A Label handouts and after many pop quizzes administered by Mommy which Daddy aced.

Yesterday I took Max and Owen to the grocery store to gather (that's what us women-folk do right?) snacks for the trip. I let Max pick out cereal with sunflower oil, chips with sunflower oil and even individual packages of sunflower seeds (never seen a kid so excited about sunflower seeds) since Owen was staying home with me.

At home later, Owen wanted Max's cereal. Max put his arm around him and said "No, Owen you can't have that it would make you really sick and you'd have to have the shot." Owen continued to protest and point at the cereal. "No," said Max "You could die, Owen, you can't have that."

I stopped what I was doing and looked at him. I just let it go. I just didn't realize that Max knew that food allergies could kill you. I guess how could he not know. He has probably heard me say it though I try not to talk about it in front of him. He doesn't express fear of dying (only fear of me dying someday), so I just didn't know that he knew.

Soymilk

Due to fairly recent recalls on Silk Soy Chocolate Singles due the presence of cow's milk proteins, the milk allergic might be questioning the safety of their soy milk. I have a solution for you. Make your own! A friend recently mentioned that her mother makes her own. She blogs about it at Soy Simplified. It's inexpensive and you are guaranteeing the safety of your own food.

Now, you might ask, does that mean you are taking up soy milk making? And the answer would be no. It's not that soymilk is inexpensive (it's not at almost $5 for a half gallon). It's not that I'm lazy (which I sort of can be). It's not that I wouldn't know what to do with the mounds of okara that is the by product of making your own soymilk (because I really wouldn't even with the help of my friend's mom's blog). It's that if I went through all the bother of making my own soymilk and my kids hated it and refused to drink it, I would be a little resentful. Max is the super taster you know. A change even in a brand of a product we use and he detects the subtle difference. For heavens sake I bought Red Delicious instead of Gala apples last week and he refuses to eat them.

The Roller Coaster Begins

An earlier post talked about the difficulty getting an appointment at my allergist so on the recommendation from someone in my food allergy support group, I called to make an appointment with a new allergist, a woman who did her fellowship with the famous Dr. Wood. They could get me in in two weeks! Our appointment is Thursday. So begins the roller coaster. The up hill I hope, I hope, I hope followed by the downhill, nope, nope, nope, nope, nope.

I told Max today that he had an allergist appointment this week (thinking I was distracting him from some other tragedy going on in his life). "Are they going to poke me again?" followed by crying. I tried to explain that this was necessary, that we had to find out if he's outgrown anything. This did not help. And I realized it's as much a roller coaster of emotion for him as well.

So this week is met with apprehension, a few tears and I hope, I hope, I hope.

Pizza Friday or What to do

What to do. What to do.

Yesterday Max received an invitation to a birthday party at Chuckie Cheese. What to do. What to do. Now I would never in a million years send this kid to a peanut factory or even one of those restaurants that scatter peanut shells all over the floor as he is allergic to peanuts and I don't know how much peanut residue could cause a reaction in him. So do I send my milk allergic son to a place covered with cheese residue?

It has been a long time since Max has had a contact reaction to milk. And though we (meaning I, for my own personal consumption) keep milk products in the house, it is limited and we are careful with cross contamination. Would just being at Chuckie Cheese cause any problems for him? I don't think I have ever knowingly subjected him to being around that much milk residue. Correct me if I am wrong here but I imagine Chuckie Cheese to be a place where children go from handling cheesy pizza to playing games to handling cheesy pizza to jumping in the ball pit. Greasy cheesy hands must touch every inch of that place.

The birthday boy is a classmate of Max's. The popular one (and you thought such a thing didn't exist in Kindergarten). The boy Max most wants to have playdates with. His mother knows Max is allergic to milk and the boy's father is an ENT doc (actually the last ENT I saw who tested me for food allergies!)

Max is also so sensitive lately about people eating things he can't have. Would Chuckie Cheese let me bring in food for him?

What to do. What to do. Any opinions on this?

Hitting the Nail on the Head

David and I had ordered pizza one night and the next day I was trying to secretly eat a leftover piece. Max caught me and was upset. "No food in the house that I am allergic to!" he grumbled.

"Max, I said why does it upset you so much lately when people are eating things you are allergic to?"

He paused and finally said the words, "Becuase it isn't fair."

I guess that says it all.

Owen Has No Sense of Self Preservation

He is standing 10 feet away from me as I talk an injured Max into rejoining his gymnastics class. My back is turned for such a short time and he is just watching a Baby Einstein video on a portable DVD player which another mother has brought for her daughter. As I turn back around what is it I yell? "Owen!" or "No!" or "Oh my God!". I don't exactly recall.

There in his hand, touching his lips is one of those little pretzel sandwich things. What is in the middle?

"He's allergic." I say pulling him to face me.

"It's just cheese!" the mother replies, her face concerned, contrite.

"He's allergic to milk." I say.

"I am so sorry!" she says "I think he only got part of the pretzel."

The sandwich does appear whole. No hives on Owen. Caught in the nick of time.

Honestly, even when Max was younger than two, he did not accept food from anyone but me. He did not pick up food and just eat it. I always thought he had such a great sense of self-preservation. He always just seemed to know. I swear some of his first words were "Read label?" It was a blessing for him to be so conscientious and a curse that food (sometimes even safe food) was considered the enemy.

Owen on the other hand has no sense of self-preservation. If it looks edible he is going to try it. Again, a blessing and a curse. A blessing that he will try and like so many foods, a curse because he doesn't seem to inherently know his boundaries like Max does.

Food Allergies and Quality of Life

The very famous (at least among the east coast people who have children with food allergies) and popular (takes like 8 months to get an appointment with him) Dr. Wood did a study with the not so famous Sally Joo (never heard of her) about The Impact of Childhood Food Allergies on Quality of Life. Their conclusion was that it does impact quality of life in some areas.

The four areas that differed from the general public were: physical functioning, emotional/behavioral problems, family activities, and family cohesion.

Here is how I view my family's standing in each area:

Physical Functioning
I guess you can't have a food allergy and not have it affect physical functioning in some way. My kids can not eat things other people eat. I think my children are also smaller than other children their age because their diet is limited. For Max I wonder if it has affected his muscle tone in some way. Part of it is his refusal to eat much at all (which will again be covered in emotional/behavioral problems). At age 5, Max can not pedal a bike and often finds physical activity taxing. Don't think I don't worry about this.

Emotional/behavioral problems
Ahhh, where do I start. I think Max's food allergies have taken a huge toll on Max's psyche. I need a therapist who specializes in food allergies to sort it all out. At a recent teacher conference his teacher and I were discussing if his need for absolute control stemmed from his food allergies. Or if his anxiety about many things stemmed from his food allergies. I told her he can't really remember his more serious reactions as they happened when he was only one year old. She talked about the unconscious mind and how on some level he must remember being sick from food. I do believe this. I can't help but feel it is partly my anxiety that he internalized though. When he was a toddler I would hyperventilate just introducing new foods to him, afraid we hadn't discovered the extent of his food allergies. I was beyond careful as I know many, many other parents of food allergic children to be.

The other part of this is Max's refusal to eat. We have called him the two bite wonder. Two bites and he's full. If he eats more than that his stomach hurts. I feel it has been better lately. We have a handful of foods he will eat all of. (One being his English muffin pizzas). However, I can't help but feel this aversion to food has affected his health.

Max also is obsessive about telling others when they are eating something he can't have. He says it defensively "I'm allergic to cheese!" Then asks them to wash their hands.

Can we say he has issues? I think so.

On the other hand, Owen's only behavioral problem (in regards to food allergies) is when I won't let him have something wants. For some reason he doesn't have the same sense of self preservation that Max did at this age.

Family Activities
Family activities can be limited by food allergies. If something seems to involve too much food I tend to avoid it. Lately I have been branching out more, attending pot lucks I wouldn't normally go to. We also avoid overly peanutty activities such as baseball games. Even flying on an airplane is a pain in the ass. It's not that we don't do things. It just requires more planning and more packing and the accompaniment of an epi-pen or two or three. (Yes, I have been known to carry multiple) We have gone to few movies and very few restaurants (too risky).

Family Cohesion
This is the area in Dr. Woods study that food allergy families scored higher in than the general public. I guess when something threatens your life you tend to stick together.

In a nutshell (no pun intended), I wouldn't exactly say our "quality of life" is less. We are a happy family. We laugh. We have feasts and treats. Do we have more challenges? Yes. Do we tiptoe where others might burst forward? Yes. But we preserver. We move forward. We find the ways in which food allergies don't hold us back.

Daddy, aka "Todd"

Today we were playing the "Daisy" game, except we were next door neighbor kids playing ball outside. (Think this child needs a playmate his own age?) My husband was doing yard work nearby. The conversation went something like this:

"Todd is the mean kid."
"Who's Todd?"
Points to David
"He's always mean to me."
"Really?"
"Yeah, he is always throwing peanuts at me"

Now to clarify, to my knowledge no one has ever thrown peanuts at Max and David, aka "Todd" is not mean to his son. But it did make me laugh. The things this kid comes up with. Throwing peanuts at an allergic kid would be pretty mean.

Mom, aka Daisy

Max is king of pretend play. We are constantly talking about or being dinosaurs, Pokemon characters, Ben Ten characters, various animals or monsters. The most interesting games which I think give me insight to Max's little psyche, are when we are people.

Most recently I have been assigned the role of Max's cousin. My name is "Daisy". My husband likes this role play and has been wondering aloud if I should get a pair of really short shorts.

The interesting part is that Daisy is allergic to all the things Max is and Max, in our game, is not allergic to anything and can eat anything he wants. So the other day I had given him a marshmallow which to Max is like handing him a candy bar. Yum, city! He is eating the marshmallow saying, "Yum, this cheesy marshmallow is soooo good." (Cheesy marshmallow, gross!) "Too bad you can't have any of this cheesy marshmallow, Daisy." (Really, I don't mind.) "I'm going to have to wash my hands when I am done eating because you are allergic to cheese, remember Daisy?"

We play this game quite often lately, me being the allergic cousin and him being himself without allergies. I wonder what this says about him and his thought process about his allergies? Is he feeling left out? Is that why he needs to create a character outside himself who is also left out? Maybe I am reading too much into but lately he has been doing a lot of "When I am no longer allergic to milk, I will eat yogos or go to Chuckie Cheese to play all of the games." How much do I let him hope? Pretend?