Thursday, December 20, 2007
The allergies we are dealing with are: milk, egg, peanut, tree nut, sunflower seed (my kids) and wheat (a guest). My garlic and seafood allergy friends couldn't make the party. I also have one child avoiding citrus, a vegetarian, and 2 pregnant women.
So here is the menu. I realize not everyone can eat everything but I think there is something for everyone. I particularly wanted to avoid dairy though, just to show that you can have a nice spread without any cheese.
Hummus with fresh cut up veges
Vegan Spinach Artichoke Dip with Tortilla Chips (I'm not going to tell people this is vegan and see if they like it)
Leg of Lamb with mint jelly
Lentil Vegetable soup
Chocolate covered marshmallows on sticks
Assorted Teas and Hot Chocolate
We'll see how it goes!
Wednesday, December 19, 2007
Monday, December 17, 2007
There is a new study out saying that only 20% to 40% outgrow milk by the time they reach school-age and only 4% - 26% outgrow egg by that time.
Friday, December 14, 2007
The cake looked good. Max was extremely surprised he was allowed to eat it to. He asked me three times if it was safe for him.
I do wonder about Max getting paranoid about his allergies. Max was again sitting by himself when we joined him in his classroom but at least the table was near the other children instead of tucked in a corner surrounded by book shelves. He told me right away that he wanted to sit by himself because he didn't want to be by the other children eating pizza. I wonder if there is some jealousy in his actions. Some feelings of realizing he is different and so segregating himself from the other children. I do hope he outgrows milk soon. I hate that he might feel different than other children.
Wednesday, December 12, 2007
1) As I was walking up to school, I saw another child from Max's class with a gingerbread house decorated with lovely puffy frosting. Picking up Max I noticed his frosting was different, a little runnier, not as bright white, definitely the frosting I had made yet different than what I saw on the other houses. Would your first thought be that they had let the other children use the egg based frosting because it works better and had only Max use his frosting? That was my thought. I was suddenly worried that they had asked me to make frosting and then behind my back used the egg frosting anyway. The container I had sent was empty and washed.
2) Max's graham crackers were "glued" to a dairy carton (he's allergic to milk as well as egg).
3) As I put him in the car Max asked why I had made him share his candy (I had sent safe candy with him as well. Though it was my thinking the candy they supplied for the other kids was without milk, egg, peanut and they weren't supposed to be eating it anyway, I wasn't able to read all the cross-contam statements so thought it best to send Skittles, marshmallows, Gimbals jelly beans, and Spangler candy canes). I asked what he meant and he said the teacher had said that I said he HAD to share his candy. I don't care if he shares his safe candy, I certainly sent plenty of it. But I didn't say he HAD to. I don't like it when teachers lie to my child and say I said something I didn't say.
Coming home I was concerned, mainly about number one. I wasn't angry or freaking out. To me it was a matter of breaking my trust. I was under the impression that I was making frosting for the whole class (which is only 8 kids) so that the egg frosting would not be used for gluing together the gingerbread houses. Granted the egg frosting is stickier and looks better on a gingerbread house. Could this be why they went behind my back?
I called the next morning. I was calm. Explained what I "thought" might have happened. The director was aghast that it might be the case the the art teachers used the wrong frosting. She said both she and Max's teacher had emphasized Max's life threatening allergy and made it clear that I was bringing the frosting for the entire class. She said she would look into it.
She called me back shortly. The teachers said they had indeed used my frosting. All of it. Toward the end of class some students weren't done and there was no more frosting. So one of the teachers got the other frosting and applied it herself to the houses of those students needing more. The children did not handle the frosting. The director reiterated that the frosting should not have been used at all.
I'm okay with this. I was more concerned that they had outright lied to me. Which they didn't. I felt it was also a slippery slope; that they might think "Oh well, we used the egg based frosting that one time and nothing happened to Max, why don't we just do it again?" The director and Max's teacher understood this and my concerns (I didn't bring up number 3 that's just between you and me). And I think we are all good?
Did I over react? Under react? Act in just the right and reasonable manner?
Monday, December 10, 2007
ROYAL ICING (Egg free, can be corn free)
2 cups confectioner's sugar (corn free or homemade if allergic)
1/2 cup light corn syrup (or rice or cane sryup)
1/2 tsp vanilla or other extract (I left this out because it makes the frosting look "dirty")
food coloring (optional)
2 or more Tbsp water
Sift sugar. Add sryup, water and extract to sugar in medium bowl and whisk to blend well. USe food coloring to tint to desired shade/color. Add more water, 1 Tbsp at a time, until icing is smooth yet thin enough consistency to paint on cookies. Let dry before covering to store. Dires to a matte finish like royal icing. Can be used for decorations, ie gingerbread house glue.
From Kathy Lundquist The Kid Friendly Kitchen
Sunday, December 9, 2007
I just don't like it when parents play the "my child is more allergic" card. An allergy is an allergy and I really would prefer to hear "I'm right there with you." Don't try to make my problems smaller than yours.
I lay awake for a long time the other night thinking of replies to this parent and in the end bit my tongue. Despite my annoyance, I need these people.
Thursday, December 6, 2007
But to get to the point. One of the decorating ideas required gluing nuts to wreaths and yule logs and I thought "Well, not in this house." However, nuts and holidays brought up a childhood memory. I have already posted about Jack Robinson's Hardware and the peanuts on the floor. The other nutty memory I have recalls my Grandmother's house during the holidays. She always had a bowl of whole nuts set out in one of those bowls that looks like a hollowed out log. I loved going over there and cracking walnuts, brazil nuts and almonds. By New Year's the bowl had always been picked over so the filberts were the only nuts remaining.
Are there any holiday traditions your food allergic child can't participate in?
Wednesday, December 5, 2007
Allergist are increasingly hard to get into. Talking to our allergist at a visit last year, I mentioned the area needed a support group. He said "Well, you won't have a lack of members. When my partner and I opened our business in the early 80's we had no idea food allergies would be this prevalent. It's an epidemic."
Sunday, December 2, 2007
Peanuts, they're everywhere.
Tuesday, November 27, 2007
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.
Monday, November 26, 2007
A report came out a couple of weeks ago about how breastfeeding reduces food allergy risks.
This was posted on both of the yahoo food allergy support groups I subscribe to. In one of the groups it caused some ranting. Women who breast fed their food allergic children for 3, 5 and even 13 months felt frustrated that this is the information out there and it didn't do a darn thing for their children. I on the other had was frustrated with their frustration. I guess it just bugs me when something doesn't work for someone and they feel they can throw up their hands and say "Hooey!"
One woman sited another study which showed exclusive breastfeeding for the first nine months or more increased food allergy risk and sited this as the reason she was weaning her five month old. I think the key word in this study is "exclusive" which to me says it isn't the breastfeeding that is the problem it is not introducing solid foods within a certain time frame.
Breastfeeding is good for so many other reasons whether or not your child has, will have or won't have food allergies. And we can't look at either of these studies as the be all and end all. Yes, it is frustrating that our kids have food allergies but no one is out there pointing their fingers at us and saying "Well, you must not have breastfed them long enough." Food allergies are one big puzzle and if the breastfeeding puzzle doesn't fit for you that doesn't mean it doesn't fit for someone else. I see no reason for half of the group to stand up and say "I breastfed for 3 months and it didn't help my child's food allergies at all!"
I breast fed Max for 13 months and Owen for 22 months. I didn't do it either times because it "may" reduce their risk of food allergies. I did do other things however that I felt may help. I took a probiotic while I was pregnant and while nursing. Both our last pediatrician and our current allergist sited a study in one of the Scandinavian countries about probiotics significantly cutting the risks of food allergies. I also didn't eat peanut while pregnant or nursing Owen (did with Max and you know where that got us).
I'd like to point out another study regarding c-section's and food allergies. Basically children who were born Cesarean are more likely to have food allergies. It all has to due with the good intestinal flora we have in our guts. It is believed that in a c-section birth this flora is not passed on to the baby. Food allergies are a reaction of our immune system, 90% of which is in our intestines. Hence, the use of probiotics to help food allergies.
Max was a c-section. When I got pregnant with Owen I was aware of this study but I didn't have a VBAC JUST because I wanted to reduce food allergies. Other factors had to weigh in. Just as with breastfeeding. Why be frustrated with a study saying breastfeeding helps reduce food allergies? Don't we have enough everyday food allergy issues to be frustrated about? Seems like a waste of energy. Then again, me being frustrated with other people's opinions may also be a waste of energy.
Sunday, November 25, 2007
We stopped at the same hotel we did last time we traveled to Alabama. Last time though we got McDonald's to eat in the hotel room and on a whim got Chicken Selects which appeared safe instead of our usual plain hamburger. Max threw up in the middle of the night.
Of course this is what he remembers from our last hotel stop. He requested that we bring our food and not buy anything "because, remember, I threw up last time."
Saturday, November 17, 2007
Outpatient surgery was interesting. Kind of like being on an assembly line. Wait here, apply wrist band, wait here, move to hospital holding area, change into gown, lie here for processing, insert IV, then sedation, wheel to surgery....wake up in new holding area. Husband called, loaded into wheel chair and pushed to exit.
Friday, November 16, 2007
We have even moved the English muffin pizzas to birthday parties. The last two Sundays have been taken up with birthday parties featuring pizza and cake. I told Max ahead of time what they were having and asked him what he wanted to bring instead. He replied his own pizza and cupcake. And while other people ate their pizza, Max happily munched his own and told everyone around him that he was allergic to cheese. He then asked them all to wash their hands when they were done.
At one of the parties the father of the birthday child asked Max if he wanted more pizza. Max looked at him like he had two heads until I reminded the father that Max was allergic and we had brought our own.
Wednesday, November 14, 2007
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:
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.
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 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).
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.
Tuesday, November 13, 2007
Last night I had a guitar lesson and as I sat there with my instructor working to find the right key for me to sing "Away In the Manger" as I played the guitar, I could feel my blood pressure lowering. The more I played the more relaxed I became. By the time I left I felt at peace, in balance...hopeful.
By no stretch of the imagination am I a great guitar player. I'm not even a really good guitar player but I enjoy it. I enjoy the act of doing it. For no one but myself.
As I was driving home I was thinking about art and music in general. If I had not had music in elementary and middle school would I be able to pick up an instrument at my age and feel I was able to do it? Hadn't the music literacy I received in my education helped me be able to enjoy playing and participating now? Hadn't my quality of life been enhanced by music education?
I think this is a good argument for the importance of art in public education. Yes, everyone should learn the basics. Yet, I feel so many people would also find life more worth living if they could touch their inner artist, whether it be visual or performance art; music or dance; watching or doing. How will they find the path to the arts if it doesn't start in education? It seems that the worth of everything taught in public schools needs to be measured but how can the enjoyment I experienced last night, decades after leaving public school, be measured?
Sunday, November 11, 2007
Wednesday, November 7, 2007
Having been a kid who is teased and having a small child whom tells me tales of being left out at school, perhaps I am being a bit sensitive lately.
Sunday, November 4, 2007
Thursday, November 1, 2007
Max is always describing inventions, creatures, suits, cars that he is imagining. Last spring, he and David sat down to put one on paper. Max talked, David drew and this is what they came up with:
I don't think it turned out too badly. Notice the "tentacles at the bottom.
Owen was a puppy. He has been wearing this toy cloth bucket with a puppy face on his head for the past few weeks. So I sewed a few black spots on a pair of blue pajamas, braided some yarn and pinned it on as a tail. He was a super little trick or treater; following his brother to knock on doors, insisting on carrying his bag even though it dragged on the ground. He doesn't like to pose for pictures so here he coloring at the school Halloween party last weekend.
Wednesday, October 31, 2007
Here it is in case you don't plan on buying Newsweek this week: Fear and Allergies in the Lunchroom.
I don't think for people who have kids with food allergies it is anything enlightening but for those dealing with us FAMs (Food Allergy Moms) it is informative.
Who's the FAM in your life?
Tuesday, October 30, 2007
Monday, October 29, 2007
At the end of the trail the Great Pumpkin was giving out "treats" to all the good children. I quickly pulled Max away thinking it was candy or the like. He actually gave me an "Oh, man." which is unlike him. He generally takes these things in stride.
Turns out I was preemptive. They were handing out trinkets; stamps, clappers, etc.
Wednesday, October 24, 2007
When I tell people that my children have food allergies I don't think they always realize how serious food allergies can be. If I said my child had diabetes people would think "Medical condition, requires extra care, can be fatal." But with food allergies, I feel they think "So, a few hives? A runny nose? What's the big deal?"
The big deal is the 150-200 deaths from anaphylaxis caused by food allergies that occur every year.
So when you see me hovering over my children eating at a gathering or when I frantically run across a room to grab something out of Owen's hand, these are the stories that are running through my head:
And so many more....
After looking over all those stories again, I feel very sober. I won't take you here very often, to the really sad place of food allergies. It's just what was going through my head today.
Monday, October 22, 2007
Max's teacher told me that it was "alumni" day. Kids from the elementary school would be visiting their old classrooms and then they would have an ice cream social. Was there any safe ice cream Max could have? I suggested Tuffutti and told her she could find it at Safeway. I offered to go buy it myself. She then asked about sprinkles. I said Max loved sprinkles (he really does and would sneak them out of the drawer where I keep such supplies if I let him.) However, last time I looked for sprinkles at Safeway I found the CakeMate brand all had allergy warnings on them (May contain trace amounts...). So I was on the way to Target anyway and told her I would find something there and bring it in. The only sprinkles Target had were in Haloween colors. They had a Target label but the small print told me they were made by Wilton. I believe Wilton is okay? There were no allergy warnings. Ingredients looked fine.
On the way to school I also stopped at Whole Foods and bought Tufutti Ice Cream in Chocolate and Vanilla. All were delievered to school and Max enjoyed the ice cream social with some of his classmates from last year. (He attends a Montessori school which has classes of mixed age groups.)
This is all quite boring I realize. It's just that while I was doing all this I thought "It's a good thing I am a stay-at-home Mom, otherwise this would have been a hectic activity to get safe items to my son's school at the last minute." The teacher could have given me a heads up last week or even sent an email this weekend. I'll cut her some slack because I do really like her.
PS I used "so" way too many times in the post. Need to work on my writing style.
Friday, October 19, 2007
The first meeting featured a speaker: Penny McConnell the Director of Nutrition Services for Fairfax County Public Schools. And I have to say if your child is attending Fairfax County Public Schools they are receiving a nutritious and kid friendly lunch. It was evident that Ms. McConnell has worked hard at creating a menu of nutritious options, no trans fats and yes they have worked on being allergy conscious. There are a number of things I felt they were doing right:
1. Menus as well as ingredient lists for all foods are posted on the Fairfax County Public schools website along with other nutritional information.
2. Peanut butter sandwiches are no longer made on site. Instead they come pre-wrapped. They did this to prevent cross-contamination of other food being served in the cafeteria. *There is a caveat to this, see below.
There were a number of things that raised my eyebrows:
1. It sounded to me that children who forget to bring lunch or lunch money are provided lunch by the PTA. Though this is handled in a number of ways (one parent said her PTA footed the bill, then asked the parents to reimburse); for most schools this means the PTA buys a big tub of peanut butter and bread and a peanut butter sandwich is made for the kid which defeats the purpose of the pre-packaged Smuckers sandwiches. Ms. McConnell says she tries to discourage this but this is what the culture currently is.
2. One person commented that the children at her local school wash the tables at the end of each lunch session. From a Montessori perspective I can understand this; making children responsible for cleaning up after themselves, making them accountable is not a bad thing in itself. The parent expressed that it made her nervous because she felt an adult would do a better job in cleaning the tables than a child. This is true. What most people don't realize it that allergens are not like germs. They are not "killed" by bleach or other cleaning agents because they are not alive in the way germs are. Allergens need to be washed away with soap and water.
3. The school system had been approached by a religious organizations regarding pork products on the school menu and have eradicated "most" pork products including gelatin. Not to be disrespectful of religions that refrain from pork products but I found it a little odd that they won't serve a prepackaged jello cup because it might cross contaminate other food but they will continue to serve peanut butter even though the cross contamination from that could kill someone.
4. Nutrition Services is just in charge of what is SERVED and have probably done what they can to minimize a reaction. When it came down to the discussion of hand washing, washing tables, or anything that that had to be dealt with on site, Ms. McConnell said it was up to the school. In her own words she said "The principal is the QUEEN of the school." Fairfax County Public Schools do have guidelines as well as responsibilities checklists for everyone from the administrator to the student. Also the food allergic child would need to set up an IHCP (Individual Health Care Plan) with the school nurse. (Interestingly enough when I toured our local public school none of these things were brought up, even though I asked about food allergy procedures) However, when it comes to setting up a nut free table or having students wash hands after eating, it is up to the principal. In other words if the principal doesn't think your child warrants a safe place to eat she doesn't have to provide one.
5. There was a provision on one web page of the public schools which I found interesting. Here is the quote:
"Students with milk allergies require a statement from a recognized medical authority. It is not necessary for a new statement to be secured each year. In these cases, fruit juice will be offered as a substitute."
So if you have a milk allergy you better have proof. Do they think parents make up allergies? Why is milk the only one you need a statement for? I just found it quirky.
I know I am being a little snide with all this and have decided not to pursue public school for Max in any case. Our decision for this has less to do with food allergies and more to do with what kind of learning environment he needs right now. I realize I am lucky enough to be able to make that kind of decision. So please, criticize my criticism, I probably deserve someone pushing back on me a little.
Oh yeah, and every Friday at all Fairfax County Public Schools, they serve pizza. It is apparently a popular thing here. So tell me, does your school have Pizza Friday? I guess I shouldn't be surprised, in Wisconsin they serve fish on Fridays. Thoses darn Catholics.
Thursday, October 18, 2007
We don't dine out. Ever. (okay the occasional McDonalds but that is it) Eating out with the number of allergies we have is too complicated and the few times we have tried, I have still had tiny panic attacks with each bite my child takes. It is too nerve wracking and honestly too risky.
So we will cook each meal, which takes a little planning. Here's the menu:
Dinner - Hobo dinners cooked over the open fire - wrap up some hamburger, potatoes other veges of your choice, add a little oil, salt and pepper - dinner camping style.
Dessert - S'mores - safe graham crackers, marshmellows and chocolate bars. The chocolate bars I have to make myself. I melted down some dairy free chocolate chips and poured them into a mold tonight. They are hardening as I type. If I had really planned in advance I could have ordered some candy bars from Amanda's Own.
Breakfast - Pancakes and sausage - I will package up the dry ingredients in a baggy with the recipe. Mix dry and wet together in the morning. Voila! Pancakes.
Lunch - Sandwiches. Not very exciting but it's something everyone will eat.
Dinner - We will have have to grab something at a local store to grill.
Breakfast - Banana muffins and bacon - Again I need to package up the dry ingredients tonight. Who doesn't love bacon?
Lunch - Sandwiches again
Dinner - home again home again jiggety jig.
Of course I will pack a little contraband cheese and crackers for David and I to enjoy after the munchkins are in bed. Not to mention the three bottles of wine. Hot tub here I come!
Wednesday, October 17, 2007
However, I am on grocery carts for another reason all together today, nothing of which has to do with food allergies. When we first moved to Northern Virginia I was perplexed by the grocery store parking lot etiquette. Wheeling the shopping cart out to the car seemed discouraged. Large barriers are placed around the entrance of the store though at some you could take the cart off to the side and out to the parking lot that way, however no one else seemed to be doing this. I was left to ponder whether I would be making a grocery store faux pas if I actually wheeled the cart to my car. So what was a mother with two small children and a week's worth of groceries to do? It seemed I was to fetch my car (taking my kids with me) and drive up to the front of the store where I had left my loaded cart and some minimum wage worker would help me load my groceries into the car. Sometimes if they weren't busy and you didn't have a lot of groceries the worker would actually take your groceries to the car. Which left me to ponder "Do I tip them?" It all seemed very odd to me.
A year later it still makes me a little nervous to park my cart full of expensive groceries in front of the Whole Foods as I carry my toddler to the car and strap him in. Perhaps it's because had I done this in Durham, NC (our last place of residence) there was a good chance I wouldn't see my groceries again.
Tuesday, October 16, 2007
It makes me feel terribly guilty when people go out of their way for us, which is just my mid-western nature I think. My resentment doesn't stem from believing other people should do something different. It stems from not wanting this to be my situation at all. Can I resent food allergies in general? Is that wasted energy? It is not something I can change, just something I can manage. That reminds me of something I saw on Oprah once (everyone groan). Someone's book had a quote something to the effect of "Life isn't fixed, life is something that is managed." Maybe it was Dr. Phil.
In any case, I need to get back to a place of acceptance regarding our situation. I think as with any loss there is a grieving process. Denial, anger, grief, acceptance. When Max was first diagnosed I went through this and came out pretty strong, feeling very capable of dealing with his food allergies. When he didn't outgrow milk last year I feel I fell back into that grieving process. I became really frustrated and the result was this blog. I need to work myself back to a place where I feel okay with our situation.
With that said the real reason I have a hard time letting kids eat off a pot luck is again, cross-contamination. A safe dish sitting next to a dish containing peanuts can easily be cross-contaminated if spoons are accidentally traded or a stray teaspoon of the dish falls into the other while being transferred to a plate. A dish with cashews ended up sitting right next to the bars I made. Maybe nothing would happen.
My husband is sometimes my own worst enemy; he chowed down on the cashew dish, scooping it up with tortilla chips fried in peanut oil. He did wash his hands afterwards. When I am at events like this, surrounded by allergens, my chest tightens and my breathing becomes quicker. It is the beginning of panic and I have learned to suppress it. Nothing has happened yet, I am learning all of our limits.
Thursday, October 11, 2007
At first I always brought my completley safe and dare I say delicious dish with a smile on my face. I even felt a little bit like a show off, as if to say "See all the great things I can create without milk, egg, or nuts?" But as the events increase and so do the needs of my two children and husband, my smile has waned. I am taking a dish to pass as well as packing a full meal for my two kids. Granted my husband and I generally eat what others bring but I am still needing to pack a complete nutritious meal for my kids, of which they will probably not eat much. Sometimes I feel "put out."
This kind of self-pitying isn't pretty. People don't like to hear the "oh poor me's." Even among other food allergy parents, self-pity is met with opposition. On one of the online groups I used to belong to (Parents Of Food Allergy Kids); parents allowing themselves or their children to feel sorry for themselves is taboo and is met with harsh criticism by other members. (I no longer belong to this group as I always felt "put in my place" after posting.) A vent posted on a listserve group I subscribe to was met with another member's reply that "venting was not constructive."
So, I guess there are two things at work here. One: How do you deal with social events involving food? How do you feel about it? And Two: How much self-pity, venting, resentment, negative feelings in general do you allow in regards to your child's food allergies? Is any amount healthy?
Friday, October 5, 2007
Thursday, October 4, 2007
It reminded me of something I looked forward to every year when I was a kid. We lived in a really small town (think itty bitty). There was a couple grocery stores, a couple bars, post office, library and one all-purpose hardware store. Jack Robinson's Hardware Store. Every December the whole town geared up for Christmas. There were crafts displays and goings on at the community hall. I remember the Christmas pageants we elementary school kids prepared and performed at the hall, a trek down the hill from the old brick school building. Norman Rockwell kind of stuff. (You can still find it in a small town called Ontario, WI). But what I really looked forward to was going to Jack Robinson's Hardware Store to crack peanuts out of the shell and throw them on his concrete floor. That was his thing. Every year around Christmas you could eat peanuts at Jack Robinson's and drop the shells. He said it was good for the floor.
What a bizarre thought for me now. For the parent of a peanut allergic kid, this is an absolute nightmare. But Jack Robinson could do that back in the 1970's (aging myself here) because though there were people allergic to peanuts then, I don't think there was anywhere near the number of food allergic children as there is now. I certainly didn't know any people in Ontario, WI allergic to peanuts.
Times have changed. The number of children allergic to peanuts doubled in a five year period. There is no cure. Ontario, WI is a dying town due to death of the family farm and any other type of industry settling in rural Wisconsin. And Jack Robinson's Hardware store closed many years ago.
They still throw one hell of a fourth of July party though, complete with kiddie parades, local talent contest, polka band and fireworks. Max got to have his first cotton candy there this summer. I didn't see anyone selling peanuts.
Sunday, September 30, 2007
"Todd is the mean kid."
Points to David
"He's always mean to me."
"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.
Friday, September 28, 2007
Thursday, September 27, 2007
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?
Monday, September 24, 2007
I let him put it together himself for dinner. I put some sauce on and he added the toppings. And you know what, he ate one whole half! I then tried adding up the calories for half a muffin with a few sausage bits, olives, carrots. Okay, probably less than 100 calories, but tasty for all you weight watchers out there. We are going to give it a go this upcoming Friday. This may be the pizza substitute we've been looking for!
Saturday, September 22, 2007
We breezed on past the concession stands selling overpriced popcorn, hot dogs and, you guessed it, peanuts. And here is the advantage of having a food allergy child. He did not ask for a single thing. We never (well hardly ever) buy him food anywhere that, well, frankly I don't know if he even realizes they are selling food. He must, I guess. Everyone around us was eating french fries and hot dogs, but not once did he say "Hey, I want that." (That is until we got to the merchandise stand after the show.) Truly, I probably saved $20 or more just becuase we couldn't eat the food!
When Max does get to eat something not made at home, he savors every bite. Last fall we went into DC to see the sights. I bought Max a pre-packaged Italian Ice from a street vendor. After reading the label 2-3 times I handed him this magnificent cherry flavored concoction of high-fructose corn-sryup. For 30 minutes he slurped and licked and praise poured forth "Mommy, thank you so much for this delicious treat." "This is so good, Mommy." "This is the best treat I have ever had." "I don't like it, I LOVE it." "Mommy, this is the best day ever." "Thank you for getting me this great treat!" "Mommy, I love you."
Aw shucks, it's just Italian Ice.
Friday, September 21, 2007
Thursday, September 20, 2007
Wednesday, September 19, 2007
Yep, if I had a superpower it would be allergen detection.
Tuesday, September 18, 2007
We tried sesame in the form of hummus this weekend and then again yesterday. He seems fine, no hives, etc. I thought maybe his diaper was messier and stinkier than usual but I don't know if that gives a real clear line for saying it is or isn't one of his allergens.
The allergist also suggested an egg challenge since his number was low and he has never actually had egg. I felt the breath leave my body when she said this. I can't imagine life with eggs in this house. It makes me nervous just to think about challenging. We decided to wait six months. It might give his gut a little more time to mature.
Sunday, September 16, 2007
Instead I made a plan in my head. When we got home I pulled out my Bakin' Without Eggs cookbook and Max and I made Cinnamon Beignets. They were really good!
I told David later what I had thought about in church, Dunkin Doughnuts, wanting to take Max. He said he had similar thoughts. He wanted us to be able to go out as a family, to a restuarant or out for some kind of treat.
There is that maybe someday again.
Saturday, September 15, 2007
Today Max's school had a back to school celebration. They had a popcorn cart and an ice cream cart. We popped our own corn before we went and put a couple Tofutti Cutie Ice Cream Sandwiches in a cooler and walked over to school to enjoy the giant obstacle course and moonbounce.
While we were there one of the mom's from Max's class came over to tell me she had seen the Wall Street Journal article, copied it and put it in my mailbox. Later another mom told me she had done the same thing! She had even taken it to the office to be copied and distributed to the whole school. They were both impressed with the a newspaper running a "solution." Something concrete they could do. Buy safe treats.
What this said to me was that other people cared about my kid. It was a nice gesture from each and every one of them. They cared enough to take the time to cut out an article and bring it to my attention. It was nice.
Friday, September 14, 2007
I asked Max if he like the pizza and he said "No, I didn't like that you cut the bottom off." (What?) He said it got his hands to messy.
I explained that I made the crust thinner and we discussed next week making a thicker crust. So I think I'll keep trying. I'd love it if he ate something besides jelly bagels even if it was one lunch a week.
Thursday, September 13, 2007
Lately, I have been telling people that I have stopped hoping that Max will outgrow his food allergies. I have said the roller coaster is just too much for me. I go into testing every year thinking "This is the year. This is the year that he will outgrow milk or egg or even...." Our last blood test was December 2006 and we got the results early January. Milk RAST had plummeted, .9! We scratch tested it in February to disasterous results. I think even the allergist was shaky afterward. He said he didn't think an oral challenge was a good idea.
I was angry though! "They" said he would outgrow milk and egg, first it was by age 3, then it was by age 5. So now he's 5 and they have set no new benchmarks for me. It is now a "maybe, someday." I had a hard time recovering not only the not outgrowing but the addition of pistachio and cashew as new positives. The first allergist we had told me that the more things he is allergic to the less likely that he is to outgrow.
But, secretly, I still hope. I still believe in that "someday." For milk, for egg and even dare I say it, peanut. I have to. It's what makes us human, hope. Hope that we will always beat the odds.
Wednesday, September 12, 2007
But no, dinners around here consist of a protein (usually chicken), a vegetable (usually broccoli) and some starchy side dish (usually potatoes). I put minuscule amounts of each on Max's plate and still I hear "How much do I have to eat?"
"All of it," I reply. Meanwhile the little one has gobbled his down and is signing for more. The kid has several clear words in his repertoire, but always chooses to sign "more." I guess it is easier to move your little hands together than speak when your mouth is always full.
Max has always been like this. It was actually one of my first indications that something was wrong. One bite and he would turn his head. He never finished a jar of baby food in that short space of time that you are feeding them with a spoon. I was floored when Owen came along and could finish a whole jar in nothing flat. I thought he was such a huge eater!
Most people take pleasure in feeling their bellies are full. Max says his "hurts" if eats a portion of food larger than his fist. Most people find comfort in eating, latching onto certain meals as something to ease the pain of life's ups and downs. Max finds each meal to be a chore and will try to find a diversion anywhere he can.
If you are thinking, "this is not normal" or "boy, they need help" I say to you "Eureka, you are right!" I have asked pediatricians, allergists, school counselors, my mother-in-law, friends, neighbors, etc. I can't seem to find someone who specializes in the psychological impact food allergies have on children. I don't need a nutritionist. (We saw one once when Max was a baby. She seemed a little clueless at the loss of dairy from a child's diet.) I don't believe there is anything wrong with him physically (besides the food allergies, I mean). He just seems to have an aversion to eating.
So the battle continues, we get down to negotiations.
"I don't like potatoes"
"So eat all your chicken."
"All of it!"
"And your broccoli."
"How about half of my chicken?"
"Max just eat"
"You haven't eaten anything! How can you be full!"
"I just am."
"Can I leave the table?"
"No, please eat your dinner."
"How much do I have to eat?"
Tuesday, September 11, 2007
I set out to try and find the study online and instead found a different one. It is from 7 years ago and labeling has changed since the Food Allergy Labeling Consumer Protection Act (FALCPA) http://www.foodallergy.org/advocacy/labeling.html but it is almost more scary that there still could be cross-contaminated foods WITHOUT "may contains" labels.
"Based on what they found, the FDA and state inspectors collected 73 samples of foods they thought might contain peanut allergens, but which did not list peanuts on the labels as a possible ingredient, and 45 samples of foods they thought might contain egg allergens, but which did not list eggs on the labels as a possible ingredient.
Eighteen of the 73 products (25%) tested positive for peanut allergens.These included one ice cream, one donut, eight cookies, two cookie doughs, and six candy products. Five of the 45 products (11%) tested positive for egg allergens. These included three ice cream, one donut, and one cookie products. " (Reference: http://www.cspinet.org/nah/04_01/allergylinks.html)
I hate may contain labels. We recently lost one of our favorite treats due to a change in processing. MOON PIES! http://moonpie.com/allergy.asp
Monday, September 10, 2007
We chose Max's school because after meeting the director we could see her passion for Montessori education and for the school she had created. We also felt she "got it" when it came to food allergies. Before Max started classes she had joined FAAN (Food Allergy and Anaphylaxis Network) and followed their guidelines for creating a safe environment. Despite the glitches we experienced last year, I never felt Max was in any danger, just sometimes left out.
Not all school's "get it". For example I toured our neighborhood public school last year, just to ask the questions. (I honestly was thinking a tuition free year, imagine what that would do to our budget!) Though a public school would need to make necessary accommodations to keep my son safe I could tell by speaking with them that they were pretty set in their ways. Epi-pens were kept locked in the nurse's office as they felt teachers might "loose" them. When someone is going into anaphylatic shock time is of the essence. What if the nurse isn't there? Have they actually done a drill to see how long it takes to unlock the cabinet, find the Epi-pen that goes with the kid having the allergic reaction, run to that classroom/playground/lunchroom? You get the point. I asked if any of the kids carried their own Epi-pen (not that I think my 5 year old is ready for that). The nurse replied "Oh, we had one girl that did for a while. It was such a pain for her to do that though." Pain? And an allergic reaction is a walk in the park? I also asked if they had ever had a nut free table in the cafeteria (as peanut butter and jelly is on the daily lunch menu). The reply was no and they could not see doing it anytime in the future. Oh, they were very nice about sharing all this info but I could see it would be an uphill battle getting them to a point where I felt Max was in a safe environment.
Another Montessori school we toured had a different take on dealing with food allergies. Basically if the child required an Epi-pen the teachers would not serve them ANY food. What does that mean? My child isn't allergic to EVERYTHING. So if you are having carrot sticks for snack my child can't have them? This doesn't even make sense? To me they were saying "We don't deal with food allergies so we will make a policy that causes you to not want your child at our school."
I feel the teachers at Max's school have his best interest at heart. They really don't want anything bad to happen to him. My conundrum is this. It costs a lot of money to send him to this school. When we got the contract last year for kindergarten I about lost my cookies, so to speak, when I saw the price tag. Don't get me wrong I think they are academically great, have a great staff and a beautiful facility but I grew up in a lower middle class family where $25 for a pair of new Nike's was a BIG deal (I'm aging myself here I realize Nike's cost way more than that now.) Wrapping my head around the commas and zeros was mind warping. So I can keep him at this school where he is safe or I can research less expensive alternatives (catholic school) where I don't know where they are in "getting it" or I can push the public school with a 504 plan.
How much is my child's safety worth?
Friday, September 7, 2007
Wednesday, September 5, 2007
I met with his teacher a few weeks ago to discuss allergy management. The focus of course is his safety while at school. The Epi-pen will be in his classroom, peanuts and tree nuts will not. I also, however, felt we (both me and his teacher) can do a better job of making sure he isn't left out of food focused activities.
For example they have pizza Fridays and, for some reason, it didn't occur to me that EVERY other child would have pizza. The last day before winter break was the music concert and parents were invited to then go to the children's classroom for lunch. I walked into a classroom where all the children were gathered around tables chatting and eating pizza except for Max who sat alone at a corner table with his lunch from home. He was excited to see me but I was sick to my stomach at the thought that this was what he experienced every Friday! The teacher later told me that he usually sits with another child who also doesn't get pizza but on that day the other child was absent.
Another incident was the Mother's Day Tea. All the classes primary through the upper elementary had made lunch for the mother's. Max's class had made fruit kabobs. I was under the impression that only the mother's were eating the lunch and the children would be eating their lunches from home. But that was not the case and as Max and Owen and I stood in line for the food Max kept melting down. At one point he asked me "What will I get to have?" I glanced at the food on the table and realized that the fruit kabobs were really the only safe item for him. We were essentially standing in a very long slow line for fruit. Don't get me wrong fruit is great but when the other children are eating sandwiches and banana bread and cookies as well it feels a little like being left out. Max is great about understanding he can't have the same things other kids have but on some level this exclusion has to affect him. I just want to minimize that affect.
So I just requested better information on what is going on at school involving food so I can do a better job of running interference, coming up with special food for him, having special cookies ready when needed. He has requested that I bring him his own pizza on Friday so he can be like the other kids. I'll try it for awhile. Truthfully he isn't crazy about the cheeseless pizza I make for him so we'll see how long he wants it before requesting his usual jelly bagel. Who knows, maybe he'll surprise me and broaden his eating horizons.
Friday, August 31, 2007
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.
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.
Thursday, August 30, 2007
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.
Monday, August 27, 2007
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!
Sunday, August 26, 2007
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.
Friday, August 17, 2007
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.