I made a pizza for Max again today. I did the crust very thin this time with the same toppings, sausage, olives, sauce and grated carrots. I took just one small slice up to school. I would say he ate almost half. At home Owen ate about the same amount.
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.
Friday, September 14, 2007
Thursday, September 13, 2007
Hope
I was going to write about something else today but this morning I got to thinking about hope.
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.
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
Dinner Battles
The battle has begun even before I sit down. "How much do I have to eat?" The kid hates to eat. How many people do you know hate to eat? Anorexia might enter your mind here. Not that I think Max is trying to stay skinny. If every dinner consisted of a chocolate cupcake with frosting I'm sure he'd gobble it right down (well he'd gobble the frosting, half of the cake and say he was full).
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!"
"Yes"
"Awwww!"
"And your broccoli."
"How about half of my chicken?"
"Max just eat"
"I'm full."
"You haven't eaten anything! How can you be full!"
"I just am."
Silence
"Can I leave the table?"
"No, please eat your dinner."
"How much do I have to eat?"
AHHHHHHHHHHHHH!!!!!
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!"
"Yes"
"Awwww!"
"And your broccoli."
"How about half of my chicken?"
"Max just eat"
"I'm full."
"You haven't eaten anything! How can you be full!"
"I just am."
Silence
"Can I leave the table?"
"No, please eat your dinner."
"How much do I have to eat?"
AHHHHHHHHHHHHH!!!!!
Tuesday, September 11, 2007
Buyer Beware
Yesterday Owen and I saw the allergist regarding his latest RAST (more on that later). I asked a million questions as I usually do. In our conversation our allergist mentioned a recent study on all those packages out there that say "may contain trace amounts of peanut/tree nut." In the study they found that 20-25% of the time that was TRUE. I have always just thought "may contain" labels were CYA. To be on the safe side however I generally avoid products that say this.
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
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
Schools that get it...and those that don't
Max's school has gone completely peanut and tree nut free this year. Last year it was on a classroom by classroom basis. I think two or three of the classrooms were peanut/tree nut free. Today a letter went home to parents explaining that due to a "larger number of children with life-threatening peanut and tree nut allergies than ever before" the school was adhering a "strict peanut and tree-nut free policy."
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?
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
Pizza Friday
Max didn't eat the pizza I made for him. I kind of suspected this would happen. He is set in his ways and I knew that though he says he wants pizza like the rest of kids he would truly prefer a jelly bagel.
Wednesday, September 5, 2007
First Day of Kindergarten
Max started school today. It wasn't much of a change for us. He will go to the same school he went to last year and be in the same classroom. His day will be longer and some of the kids and teachers will be new but essentially not much changes for him so it didn't feel stressful for me or I think him.
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.
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.
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