Confusing Results

Food allergies are never cut and dry. About a month ago I was eating Sunbutter (think squashed sunflower seeds, very yummy) and apple slices. I was dipping the slices in the sunbutter, getting it on my fingers. I usually wash my hands after but the phone rang. As I was chatting with a friend Owen wanted on my lap. I picked him up. After I hung up I played with him on the floor for a little while. Then I noticed the hives on his arms. Just to see, I smeared a little sunbutter on the back of his leg (DO NOT DO THIS IF YOU THINK YOUR CHILD IS ALLERGIC TO SOMETHING). He of course got hives on his leg. They seemed to be spreading both on his arms and legs and he was digging his fingers into his itchy arms. I began to panic a little. By this time I had washed my own hands three times. I stripped him down and put him in the bath tub and gently washed his body. I gave him a teapoon of Benedryl and called the allergist's office which was closed and then called the pediatrician. About 20 minutes after giving him the Benedryl the hives began to go away. I went to the peditrician anyway.

The allergist recommended we do a blood test to confirm the allergy and test for other seeds (sesame and poppy). I requested they also get a RAST reading on the allergen's he has had positive skin tests for (milk and egg).

So we got the results back last Friday. Milk 2.60. Damn. I was sure this would be lower given his fairly mild reactions. That number is higher than Max's RAST for milk has ever been and he is vomit all over the place, puffy face guy. Egg white .55 (>.35 is considered negative) and egg yolk >.35. Good numbers! Definate outgrowing kind of numbers. Poppy seed >.35. Sesame seed .44. Low but I would prefer sesame was negative. And here is the kicker: Sunflower seed. The conversation went something like this for this one:

Nurse: Sunflower - point two four.

Me: What?

Nurse: Sunflower - point two four.

Me: POINT two four

Nurse: Yes. Point two four

Me: Not TWO point four but POINT two four.

Nurse (clearly exasperated): POINT two four.

Me: Okay, I'm confused.

Before giving me the results she asked if I wanted to come in to talk to the doctor about them. I had said no just give me the numbers. I'm a seasoned FAM (food allergy Mom). I figured I knew what was what. Lots of hives, positive test, right? But now with the .24 Sunflower reading I'm really confused. How can he have such a stong reaction and basically be negative? Was the reaction to something else? If so what?

So I set up an appointment to see the doctor next Monday. Thing is I think I DO know what she'll say. "The tests just tell us the likelihood of a reaction. Nothing can tell us if a reaction will occur and how severe the reaction will be. So to be on the safe side avoid sunflower seeds and all sunflower seed products."

Easier said than done. Next time you are in a store pick up, say, a bag of tortilla chips and read the label. It will most likely say Contains: Safflower and/or Sunflower and/or Canola oil. Come on! Which is it? Pick an oil and stick with it for God's sake.

Oh, the drama....

I don't want to misquote anyone here. It is hard to remember a conversation word for word but this is the way I recall it. We were back to the subject of food allergies (honestly I need to figure out how to NOT talk about food allergies to others all the time). One of the women in the group runs an at home preschool. Someone asked her how she handled food allergies and she said, "Oh, I just weed them out." Meaning she just doesn't take kids with food allergies. She went on to say how hard it was and what a "nightmare" one of the first kids she had was, what with the hand washing and avoidance and all. She threw in an "oh, the drama." and mentioned how the mom hadn't wanted her child to always eat alone because it would make her feel "sad." She also said "No offense to Max." (maybe she should have just said "No offense to you" because I was the one feeling my blood pressure rise). I said something like "I guess I won't be sending Owen to you."

It is hard for me not to take that personally. Today I feel hurt and a little confused and disappointed. I want to make friends and yet sometimes feel like my kids food allergies even put me on the outside of things.

But to address a few points of view:

1. Screening kids for entry to her preschool is perfectly legal. She can take or not take anyone she wants.

2. A child being ostracized because of food IS sad. The day I walked into my own son's preschool and saw him sitting alone in the corner while the other children were gathered around tables eating cheese pizza, I felt sad. I fear the social implications of my kids' food allergies almost as much as I fear anaphalaxis. In the end of course I want them alive but at the same time how do I keep them from being alone, on the outside, always different from the other kids?

3. Handwashing. Children can have extreme reactions to food residue. Max remained contact reactive to milk until he was about three and still I'm sure would have a skin reaction to any of his other allergens.

4. Oh, the drama. Honestly, I hate people who create drama and I try to go through my life creating as little drama as possible. Yes, I worry about how my kids food allergies impact others. I worry people won't understand. I worry they will resent my child. I worry that they will choose to ignore that my child has life threatening food allergies. And for thoses reasons I try to make it as easy as I can for his preschool teachers and other parents. I don't ask that all foods in the room be completely safe. I do ask that you let me know you are bringing cupcakes to celebrate your child's birthday so I can provide something for Max.

My son's allergies like millions (yes, millions 2.2 million school-age children) are life-threatening. Food allergies are the leading cause of anaphalaxis causing 30,000 ER visits and 150-200 deaths every year. http://www.foodallergy.org/downloads/FoodAllergyBasics.pdf

So to me drama would be if my son had a reaction in front of your child, if the teacher had to give him the Epi-Pen in front of the students she is teaching, if the EMT's had to rush my son from the classroom to the hospital, if my son died in front of you. That is drama.

Lolipops and Other Handouts

"Is she handing out candy?" I say to no one in particular. We are at swim lessons and for some reason this particular group of mommies tries very hard not to make eye contact let alone talk to anyone. This is actually my second outburst today. The first was "Eeeehhh, turn around, turn around!" Directed at the swim instructor who had her back turned to my son struggling to get back to the side of the pool. She turned and scooped him up just as I was about to bound through the glass doors.

This time I do bound through the doors and make a beeline to where the very young, very pretty swim instructor is handing out what I now see to be lolipops. Why? It isn't even the last day of class. The other children have each taken a lolipop which I now see are Dum Dums, actually one of the few safe candies for us, but Max has hung back, seemingly unsure of how to handle this. I squat down next to the teacher and gently say to him, "Are you waiting to find out if they are safe for you? Do you want me to read the label?" He nods his head. "Is he allergic to something." replies pretty young swim instructor. "Yes." I reply and run down the list, "But we have had Dum Dums before. They are okay." (For all you other food allergy Moms, yes, I should have double checked, I know read every label even if you think it is safe.)

As Max picks out a flavor, I say to him "I am proud of you for waiting to find out if it was safe. That was very smart." "Yes," chimes in PYSI, "Because I didn't know you were allergic to something." (She is actually a very nice girl, it's her last day teaching which is why she brought the treat.)

But really, WHY do people have to bring food to handout to other kids? At camp earlier this summer, a parent brought Tootsie Rolls for all the children. When I got there to pick up Max, the counselor told me they had given it to Max to put in his backpack but didn't let him eat because they weren't sure he could have it. "Wise choice," I told her and under my breath added "WHY do people feel the need to hand out treats?" Max of course comes running up saying "Mom they handed out these chocolate things. Can I have it?" I kneeled down showed him the label and where it said "milk". He was disappointed but as usual recovered quickly.

Another case in point and then I will stop this rant: The second day of a 1/2 day YMCA camp a parent brought cupcakes for her daughter's birthday. Really. It is a 3 hour camp of a bunch of kids your daughter met yesterday and I am sure you will be celebrating at home later today. Everyone does not need cake!

Birthday Party

We went to a birthday party for a friend of Max's today, cupcakes and alternate foods in hand. It had been a fairly easy one to prepare for as I knew the Mom fairly well and her own daughter has food allergies so my questions weren't met with confusion or resistance. Max had a great time. It is unfortunate that such a social child should have food allergies. The kid just loves a good party!

I gave Owen a hot dog and some strawberries from a fruit salad while we were there. He got some hives around his mouth. I can't figure out why. New allergy? Cross-contamination? Later he had a loose stool and was running a fever. Continuation of allergic reaction? Illness? Food allergies are always a guessing game. Before he went to bed I gave him Benedryl and Tylenol. Just covering my bases.

Suspicious Orange Juice

He was suspicious of the orange juice. "This doesn't taste right," he said "Did you put anything in it?" I had tried the day before to add a liquid vitamin to his beloved calcium fortified orange juice. He had immediately detected something different and refused to drink it. "No," I replied, I did not put anything in it. However, it is a different brand than I usually buy, maybe that is why it tastes different." He takes another sip, turns up his nose and sets it on the counter.

Meanwhile the young one sucks his down, hands me the cup and signs for more.

If sensitive taste buds was a super power my son would be a hero. Saving all children from Poly-Vi-Sol.