You Are In The Right Place

No, don't go away. You are in the right place. I am just trying out a new look.

Reading for Pizza

There was an article last week in the Washington Post about local schools trying to limit the amount of food used as prizes. It was ironic because in the same the same week I found this in our Kindergarten handbook regarding encouraging reading.

"Every time your child has read 10 books he/she will be rewarded with a personal pan pizza from Pizza Hut!"

Excuse my sarcasm but Oh joy! Just what the diary allergic child wants! A personal pan pizza from Pizza Hut!

I have emailed the teacher (in a honey not vinegar sort of way) to ask what alternative she might be offering Max or if I should come up with a prize myself.

Firsts

My friend over at Monkey Business was running a contest about writing about firsts. Entries were due yesterday but here is mine. Day late and dollar short.

The first time you give your infant ice cream is usually a joyous fun occasion. My mother had really looked forward to giving Max his first bite so we had taken him to a local ice cream shop. Upon putting the spoon of vanilla frozen yogurt in his mouth, he pushed it out and made a face. Then the strangest thing happened. The area around his mouth got red and these large white bumps pushed to the surface of his skin. They happened so fast it looked like his skin was bubbling. What scared me was what my Mom said, "I've never seen that happen before." I couldn't imagine what was happening that my own mother had never seen before. In the car he kept clearing his throat like something was caught. Once home he threw up. The pediatric nurse at our doctors office thought it was nothing, "A skin reaction, maybe." is what she said. So this first was followed by many repeats of the same until we figured out Max had food allergies.

The first time Max was skin tested and subsequently diagnosed was heartbreaking. The doctor explaining anaphylaxis. The nurse demonstrating the Epi-pen and saying, "You need to take it everywhere, even if you are just running to the grocery store." I left shaking my head, thinking "They have got to be wrong."

The first time one of my children needed epinephrine was also heartbreaking. It happened at the allergist office and for some reason marked for me the seriousness of my children's allergies. However, there are firsts we haven't experienced yet, the first time I will have to administer the epi-pen myself, the first time we visit the ER, the first time for accidental ingestion of one of our biggie allergens. I know these could be very real for us. They aren't firsts I look forward too.

There is an elusive first we haven't experienced which I hope and dream and pray for everyday. The first time one of my children outgrow one of their allergens. Please God let me have that first.

Sunflower Oil

Oh, one other thing. Dr. B. doesn't think we need to avoid sunflower oil as it is highly refined. So watch out! I am going to buy any darn brand of tortilla chip I want!

Sesame Allergy...Or Not

We just got back from the allergist where Owen had a skin test for milk, egg, peanut, soy, wheat, strawberry and, of course because of our recent experience, sesame. Interesting outcome. Sesame was completely negative. It barely even got red. We will still follow up with a RAST (time for our annual testing anyway) but for us skin tests have generally been a good indication of allergy.

Results of the others some happy surprises and some not happy non-surprises. Peanut was also negative. Yea! We have never tested peanut before so cross fingers that we have dodged the peanut bullet. Egg was a HUGE positive. Second in size only to Max's first peanut scratch test at age 1. No surprise really considering Owen's last experience with egg. Milk was positive but not much larger than the control and soy and strawberry weighed in with a little red bump for each. As he is consuming both regularly, Dr. B. thought these were still okay for us.

So again, sesame allergy or cross-contam with those darn Back to Nature crackers? (David just thinks 2 year old 25 pound boys should just not consume a half a box Ginger Sesame Crackers.)

Adding an Allergen?

History: Owen is 2. Allergic to milk, egg and sunflower seed. Tested positive for sesame last year with a .44. The allergist asked if he had had sesame and yes he had, by accident (hummus), but liked it so much and had no reaction so I let him continue eating it. Allergist said this was okay. He has over the last year eaten lots of hummus and sesame crackers, etc. He is allergic to sunflower seed. Gets all over body hives from sunflower protein (namely sunbutter) touching his skin BUT RAST tested at .24 (what?). Has never consumed sunbutter but previously ate numerous things with sunflower oil.

Current issue: Two days ago I had bought a box of Owen and I's favorite crackers. Back to Nature's Ginger Sesame Crackers (contains sesame seeds and expeller pressed sesame oil). We have been known to polish off the whole box in one day. He ate quite a few in the morning. After nap I gave him a baggie of them as we picked up Max from school. When we got home he had a few hives on his stomach and then some on his face. Later he had a loose stool. All day yesterday he had diarrhea which has left his little bum red and raw. So I think it is a mild reaction to something and is similar to his milk reactions. We had started giving him whole milk yogurt and things containing milk after he turned one (pressure from pediatrician because he was underweight) and it always resulted in a few hives and diarrhea. (To which one of the pediatricians at the practice we go to did not think indicated an allergy and wanted me to start WHOLE MILK in a cup instead of eliminating milk all together, idiot).

So I am left wondering was his reaction to sesame (he ate A LOT of crackers) or cross contamination. I know that Back to Nature also makes a White Cheddar Rice Cracker and I read in Kids Food Allergy blog that Back to Nature does not do a good job with cross contam labeling.

What do you all think?

"NO PNUTS"

The vanity license plate I spotted today. Cracked me up.

Strength in Numbers

The surprising thing that came out of "being the honey" regarding Mrs. S. birthday celebration on Friday is that I found out there is another child in the class with just as many allergies as Max and perhaps then some. I knew there was another peanut allergy in the class as there are two epi-pens in the classroom and I knew that Max sits next to a boy at lunch who has an egg allergy. Turns out the two are in the same family. Twins! With food allergies! Boy and girl. The girl is allergic to peanut, tree nut, egg, soy and, I think, shellfish.

I talked with their mother on the phone. It was humbling and relieving and sad and GREAT to talk to her. And the best part was that the class parents turned the whole food thing over to us. And Ms. S. said she would prefer fruit for her party. So that is what other allergy Mom and I are providing. Fruit. Perfect.

On another note, a friend of mine who has been a long time reader of my blog, recently joined the food allergy club. I know she never thought she'd be here. Her son recently tested positive for peanut, almost all tree nuts, egg and corn. I know she is having a hard time. It's so hard to walk in these shoes until you have them on. I know she wants reassurance. So, I can't tell you that your son will outgrow any of his allergies. No one can tell you that. You didn't do anything to cause them and you couldn't have done anything to prevent them. Take those thoughts out of your head. But you can do this. You and your son are stronger then you ever imagined. I know adults with food allergies and parents of adults with food allergies. They have made it and turned in to great, strong people. You and your son will be there someday. In the meantime, grieve and learn and lean on some people and educate and don't be bitchy like me. And some day you will be giving this same advice to someone who has been newly diagnosed.

Welcome to the club. Sorry you had to join.

Being the Honey

I have been a bitch lately. Lashing out at people before giving them a chance or walking in their shoes. Ever since Max started school this year I have just been in a tizzy of worry, clouding out all rational thought.

I don't know how many people have said to me lately "You'll catch more flies with honey than vinegar." And I know it's true. I was just saying to someone last night that I am going to try to "be the honey."

So today when I got an email from the class parent saying they wanted to celebrate Ms. S's (Max's teacher) birthday and were looking for suggestions for what to serve and that they probably couldn't accommodate food allergies so we with such problems would need to provide something else, I felt the heat rising from the pit of my stomach but thought "be the honey." I replied I would be thrilled to bake something for Ms. S.'s party. Chocolate cake? Oreo cookie cupcakes? Cookies? Muffins? You name it I can do it. I felt better about myself.

The reply I got was "Thanks for the offer. Can I get back to you when I find out about the other kids food allergies too?"

Be the honey....
Be the honey....
Be the honey...

Medic Alert Bracelets

I bought Max this Medic Alert Bracelet because I think it is time he start wearing one. I got him something "cool" looking because I thought he would be more willing. No such thing. He keeps hiding it on me. I just found it again.

My husband doesn't see why he needs to wear one. He is safe enough at school and otherwise barely out of our sight. Even Max comes up with why he shouldn't have to wear it. The other day when I was asking him to wear it to the gym he argued that they didn't serve snacks there so he was safe without it. Besides he won't eat anything he isn't supposed to.

So does he need to wear it? And how do I get him in compliance?

What is Your Opinion?

The following email came through one of my mommy groups. Not knowing the peanut allergic moms side, should peanut butter be banned in this classroom? I'm interested in your responses...

Ladies,

I've got a dilemma and I'm not sure how to handle the situation. It concerns my son and his new classmate who has a peanut allergy.I preface this by saying I'm a former EMT, so I'm very familiar with anaphylactic shock, severe allergic reactions, Epi pens, and the like. I'm not really looking for a Food Allergy 101 type of discourse, but more along the lines of how a child with food allergies assimilates into the non-allergic world.

Here are the facts:1. My son J (3.5 yo) is autistic and enrolled in a public elementary school that features a special needs preschool program. He was in the school last year, another Fairfax County school this summer for summer session, and back at his original school for the new school year.

2. Due to the nature of his condition, J is very tactile defensive and sensory, esp. with food. Think picky toddler eater, times 10. He has a special diet with biomedical supplements, so I'm not entirely unfamiliar with what it's like to *not* be able to eat everyday, common things that every other child on the planet enjoys. But he is down to 2 options for lunches (PB&J, or grilled cheese sandwiches.. .which he's not supposed to have because he's on a casein-free diet, but we do offer him occasionally so he doesn't completely max out on the other option. and yes, we've tried and he hates the non-dairy cheese alternatives, so we supplement with probiotics and digestive enzymes to help with any distress, but it does make him rather "stimmy"). He is down to 2 options for dinner as well, both of which require a stove to prepare - so we can't just flip the menu to serve lunch at dinnertime.

3. J IEP includes socialized eating during snacks and lunch, hoping that seeing other children eating and trying different things might inspire him to imitate. It hasn't happened yet, but the teachers are aware of his feeding issues. We supplement with private OT in the home for feeding as well.

4. A classmate of J's has a peanut allergy. On his first day of school, after we sent PB&J into school for lunch, the teacher asked me to no longer bring PB into the classroom due to the classmate's allergy.

5. I explained J's limitations with diet, his IEP needs and goals in respect to feeding/eating, and asked if there was a workaround since there's really nothing else we can feed J. She thought perhaps J could eat in another room or at a table by himself. I did not say anything because she needed to confer with the parents of the affected child and the health coordinator, but I was not really thrilled with isolating J because it seemed punitive (why isolate him vice the other child) and he would lack the socialization needed to expand his feeding skills and repertoire.

6. Today the teacher announced that they have rendered the classroom a "peanut free" room after speaking with the parent about the severity of the allergy. She is drafting a letter to send home to all parents, and PB is no longer allowable in the preschool while this child is in attendance.

7. J's school is not a peanut-free school, nor is the Fairfax County school system. The school cafeteria features PB&J on the menu daily as a "default" option if students don't care for anything else on the lunch menu. There are a few hundred children that attend the school. Since the child is clearly highly allergic if they're now rendering the classroom peanut-free, wouldn't it stand to reason that the other hundreds of children who use the bannisters, library, gym equipment, playground equipment, and other commonly-shared objects/areas could potentially harm this allergic child?

I keep thinking that there has to be a workaround. That this child could eat in the other preschool classroom... perhaps one room can be peanut-free and in the other it's allowable. I know it's not a perfect comparison because it's not a life-threatening situation, but when J would wig out from sensory overload when we went into a grocery store or heard another child crying which would trigger a complete empathetic meltdown in him, my first gut instinct was to protect my son because he's different and sensory-sensitive. But logically I knew I couldn't ask people in public to make their children stop crying (don't we all wish this was possible!?) or take their kids out of the store or ask the store to turn the music down or the flickering flourescents off. J had to learn to cope in a world with such uncomfortable, intolerable distractions. We have to live in "their" world; they can't live in "ours" - in other words. So when I try to think of things in a fair and balanced nature, I wonder how kids with severe allergies have to face situations that threaten their health on a daily basis, and what are potential strategies to accommodate both types of kids without penalizing one or the other. How does the peanut-allergic child live in a peanut-eating world? How do moms with children with severe food allergies handle this in the school, in public areas, etc.? How do moms who are current or former educational providers (public or private) handle both types of kids? I feel like I need to advocate for the rights of my own child, as much as another mom would advocate for the rights of hers. Both types of kids are entitled to the right of a public education. But rather than be combative, I'd like to find a cooperative solution (other than harm my own son's health with daily cheese intake, or sacrificing lunch in the schools everyday). Any insight, advice, or suggestions are highly appreciated.

Conference Fall Out

The teacher is strict and stern. Not a lot of warm fuzzies floating around.

Max is truly being a disruptive turkey.

Conference Tomorrow

Now I'm more nervous. She wants the school counselor to sit in on our meeting. What does that mean?