food allergy

Sometimes, no matter what you do for your child with life threatening food allergies, there will be mistakes at School.

Thankfully, nothing physically happened to put her in danger but it was going that direction. This was an emotional attack and broke my daughter’s fragile heart and put me in a lose lose situation.

I totally get that unless you live the life of a person with severe food allergies you don’t get how dangerous it can be physically or emotionally.

I try to advocate, educate, tell funny stories and make it all as positive as possible. Everything is in place at school with her IEP and 504 Plan that gives her legal protection. I keep open communication with the faculty and teachers.

For the most part I am really friendly, laid back and positive about everything. Follow the guidelines and nothing goes wrong and I don’t have to get all crazy.

Though, sometimes things slip through the cracks. Sometimes we have to deal with parents who push their own agendas or teachers not reading the freaking manual.

I personally can’t stand end of year parties and holiday times because it is a source of stress and frustration no matter what alternatives are provided. There is a reason many schools BAN classroom parties. Not just because of the food allergy issue but because it takes away from valuable classroom time and lots of parents don’t want other parents sending their children on a sugar high.

Even if I didn’t have the perspective that I have I wouldn’t want my kid having cupcakes, pizza, candy or junk food all the time. We don’t do that at home for health reasons so why should it be a constant staple at school?

Anyway, a pizza party was decided for my daughter’s classroom. My daughter is contact sensitive to milk. This fact sucks and has been a challenge to control. If she ingests milk or has too much exposure she can go suffer anaphylactic shock which can kill her. This fact, obviously, sucks even more. I thought everything was clear about pizza and ice cream being around her. I thought it was understood what was in her health plan. I can easily provide alternatives and we can do other foods or popsicles. But, no. It was decided and announced that pizza was it.

If you don’t have experience with health plans and IEPs then this may seem confusing. Basically, if a child has any special needs then accommodations need to be legally met so that child can be in a safe learning environment and not fall victim to discrimination.

Everything about this party legally went against what is laid out to prevent her from physical and emotional harm. Still, it was pushed forward. By the time it was told to the parents it was a little too late… the kids knew and were looking forward to it. This worried my daughter because the last thing she wants is for all the kids to be mad at her because of her health conditions. It was a lose lose situation and I watched her cry herself to sleep more than once because of something that could have been prevented.

I just didn’t get why we were dealing with this when we had no issues this year and everything laid out was so simple. Why choose the main food that can put her in harms way?

It started turning into a battle. Some asshair parents started gossiping which got back to my daughter. People can be so selfish, though, they think we are the selfish one.

Yes, blame the child who can’t help the cards she was dealt with. It was suggested I just kept her home. Really? We have dealt with so much negativity and people even wishing harm on her.

You start to reach the boiling point where you think you can’t win and hope in people not being asshairs is lost.

It is pizza. PIZZA! All the kids ultimately care about is they get to party. I wanted peace. I wanted my daughter to finish the school year in a positive note since we have had to face the fact she will be homeschooling soon.

The alternative? Our wonderful Principal, who really understands my daughter’s health issues because of personal connections with it, wanted to just make her happy. We were all worried about pulling the party at this point and kids being upset with her. There was also concern that catty parents would turn it into something bigger… because some people have nothing better to do. We didn’t want her missing school or being put in danger.

The alternative?

My daughter is having a special day with the Principal. They have games, popsicles, allergy friendly cookies, bubbles and all sorts of things planned. She is throwing my daughter a party with the office staff and making her feel special. This is insane to me because everyone is so busy with end of year craziness. The principal insisted that my daughter was more important in these moments and everything else can wait.

We weren’t sure how awesome this would be to a fourth grader but my daughter was elated going to school with her party supplies. She was so happy to be greeted by everyone in the office who were showing genuine excitement to have their own lunch party with her.

When my daughter hugged me goodbye she told me thank you for always helping her find a way. That moments like those make her feel like the luckiest girl to have a Mommy like me and to have days and events where she can feel special and forget about the things that make her different. We try to make the most of each day, no matter what.

I walked away with happy tears and can take comfort in the fact that we are ending this year on a good note.

Though, I do kind of feel bad for the Thor hammer like emails I had to send out advocating for her. However, time and time again I realize that we do have to live, laugh and ninja kick those obstacles and find those happy solutions.

And no one is going to take away my daughter’s choice or right to be safe.

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No one is perfect.

Not my precocious, sweet natured and mature daughter who has life threatening food allergies.

Not me as a friend or Mom.

Not the seemingly perfect PTA Moms, hottie at the beach, Mom of the year, the people we love, Super Duper Dad and not you.

All we do in life is try to make the best decisions we can and hope for the best. We like to think we have all the answers and that everything we do will turn out right…

and sometimes we make decisions that we know are not the best. We’ve all done it. Pushed the limits a little too far. Broken, sprained or fractured our bodies or hearts.

My daughter is nine and going through that phase I’ve feared since I was pregnant with her: She is transitioning from a the child I’ve always known in to the girl she wants to become and making me want to rip my freaking hair out. It is a crucial part of development and something we all go through.

And it still sucks.

No matter how “right” you raise a child they will push boundaries, go against you and become their own people.

By the way… there is no “right” way to raise a child.

Even the most seemingly perfect parent screws up. We all screw up.

All we can do is just figure it out along the way and hope we don’t screw up too much.

We hope we are doing it “right” even if there isn’t a cookie cutter answer for every situation.

I thought I was raising my daughter in such a way that she would always make the “right” decision when it came to her health and life threatening food allergies. I’ve educated her. She has seen me advocate for her. I’ve given her the tools to take responsibility and ownership of these health issues she faces and been by her side every step of the way. She has been applauded for her amazing ability to manage her health and self advocate.

But, she is still a child who is going through the start of a big phase in her life where she is going to push, test and find herself. This combined with the reality of her health issues, chronic pain and how pissed off she really is that she has to deal with this is harder than I expected.

I’m sad for her most days and angry on the other ones.

I often just cry with her.

The most frequent stories I hear about a child dying from anaphylaxis shock are teenagers who either forget their epi-pens, kiss someone who has consumed food there are allergic to or who push the limits themselves.

When my daughter was an infant I never thought she would be that kind of teenager. I thought… oh I will raise her better than that! I will do it right.

A couple weeks ago she ran from the kitchen projectile vomiting towards the bathroom. It was so sudden. She was screaming. By the time I got to her I could see the hives covering her arms, legs and face. I gave her benadryl and opened her epi-pen.

I knew if her airways started to close I needed to administer it. I knew what to look for. I had no idea what happened, why this was going on or what the next few minutes would bring…

All I knew in that moment was…

My child could die if this got worse.

The arguments we had didn’t seem that bad anymore. The mess in her room that always bothered me were insignificant. Her attitude was something I hoped I’d get again by the end of the day. The recent defiance was now seen in the light of her first steps in being a strong, independent woman…

Holy shit. What if she doesn’t live to be that woman?

When I thought that… well, I honestly cannot explain the pain, fear and rage I felt.

The swelling was minimal, the hives slowly started to fade, her vomiting ceased and she was finally able to tell me what happened.

She had a taste of pudding that she knew had milk in it. Like literally the amount that she picked up on the tip of her finger. Her milk allergy is off the charts so much that she is contact sensitive and she knows that!

Why would she do that?

Many reasons. None of them right or wrong. They just were.

She wanted to know how it tasted. She wanted to know if it was different than her pudding. She wanted to know what it was like to be a kid who could just eat anything. She also had wondered how bad it would be if she ate it… she half wondered if her milk allergy wasn’t as bad anymore since so many others have faded.

She knew it was wrong.

She knew it was a risk

She knew what the consequences could be…

But, she did it anyway.

Fortunately it wasn’t as bad as it could have been. We are both thankful for that.

I was angry at her. I was disappointed in myself. I’ve had so many recent moments with her making terrible decisions like stealing money or just being a little crazy person of ultimate defiance!

I had to really process what happened and why. I actually thought about myself a lot as a teenager and the really dumb things I did. I rebelled more than most do in a lifetime but I was fighting against some dark demons of my childhood… which I didn’t know at the time.

I can’t say that I never put myself in a life threatening situation or did things that could have completely ruined my life. I can’t say that I, as a teen, always made the right decisions or more importantly that I never made a decision I knew was bad.

The disconnect for me is that I didn’t have a life threatening health condition I was rebelling against or chronic illness that I was resentful for. I was just a punk ass kid!

I can’t imagine what I would have done had I been dealt those same cards.

My daughter hated her cards. She hated being different. She hated the comments insensitive adults make or the lack of care or concern she has been shown. She hated that she can’t just be like every other kid. She hated that she gets tired, hurts a lot and doesn’t know what her body will do next.

She hated being who she is… and she didn’t know what to do with that. She had a moment of wondering what if she consumed milk and had no reaction?

She would be a normal kid?

And she wanted that more than anything else.

She was wrong.

She knows that now.

She does love the life she has. She appreciates all that I’ve done for her. She knows she has been able to do more than some of her peers because of the adventures I will take her on. She loves me and all that we do. She isn’t ungrateful… quite the opposite.

She was just mad.

Most kids will come home late. They won’t pick up their rooms when asked. Might not turn in some homework or tell lies. They will talk back. They will say bad things about friends or family. Most kids will do normal rebellious things that we all experience.

But, when you have a child who has some serious life threatening health issues or who deals with chronic pain… they will not only do all those normal things but they will also have moments where they just don’t want to be themselves.

I can’t judge her or be angry at her for her decisions. I know its typical development but something most can’t comprehend if they don’t have a child with special needs. It does scare me. It seriously scares the shit out of me to go through that again… and we probably will in many other ways.

She wanted to have hope to have a normal life… and what she ended up discovering is that despite her health issues and life threatening food allergies she has a very full life. One that she loves.

We got through that hurdle and we will both keep learning from each one of them.

We both walked away with a lot more patience, appreciation and strength.

I also walked away with more gray hairs, possible ulcers and the feeling of my heart falling out of my butt.

 

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Tips on Making The most out of visits to the doctor

I’ve dealt with a lot of bullshit from people since my daughter became what we affectionately called the allergy bubble baby at a month old. She was so sensitive I couldn’t risk cooking something in the house that she was allergic to. The slightest exposure caused her to be covered in hives. It sucked. It still sucks.

I do get that a lot of people can’t wrap their head around the fact that a small protein of food can kill someone. They probably don’t have anyone in their family that has allergies. They may associate indigestion with spicy foods to allergies. Or they may just simply love their food more than my kid’s safety. Either way I try really hard to be patient, provide alternatives and educate them… but sometimes people just don’t get it or don’t want to get it.

Anaphylactic shock is something you have to fight to prevent, modify your lifestyle to stay safe, but there is only so much in your control. Food is everywhere and the slightest mix up can make someone stop breathing and lose their life in minutes. To say that it is scary is an understatement. It fucking frightens the shit out of me in ways I cannot correctly convey, but I try so that others may get it.

Imagine a loved one has to walk on a small trail every day to get where he/she has to go. There is no alternate path. It is small, windy, dark and sometimes hard to stand on because the path is so uneven. Now, imagine that this path is in the center divider of a very busy highway. Cars are constantly zooming by. They get so close that they brush against your loved ones clothes, hair and skin. Sometimes too close and bruises are inflicted as they are jostled about. But, this is the path that they have to walk on. You can’t control the amount of traffic and you cannot change its course. You can only hope that your loved one can stay safely on the path… and you can only hope that one of those cars doesn’t wander off…

You do what you can to protect the one you love who is so vulnerable walking this unstable road every day. Make signs. Make noise. Detour the traffic as much as fucking possible. But, the dangers will still be there… and you can only hope to reduce the risk. You can only hope the drivers care enough to pay attention.

I’ve seen my child turn blue, swell up and stop breathing from one accidental bite. It was horrific. I don’t wish that feeling upon anyone. I never want to see that again. So, if I’m considered a bitch because I am going to put my foot down and not want your kid’s death cupcakes in my daughter’s classroom then oh well. I wouldn’t drop your kid into the middle of the highway so why do it to mine?

For those of you reading this that fight the same fight I do… keep your head up, don’t let someone guilt you for keeping your child safe and always advocate even if you end up with those judgmental looks.

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My daughter’s food allergies appeared when she was just a month old. It was a terrifying experience and started us on a long road of lifestyle changes and learning to manage her food allergies without freaking out.  Her previous allergy list was Eggs, Milk, Wheat, Pork, Oats, Corn, Soy, All Nuts, All Fish, Eggplant and Berries. Yeah, we were very limited. Over the years of strict avoidance and a lot of conflict in between we have made huge progress with our modified lifestyle and with her allergies. The list is now down to eggs, milk, pork, nuts, some fish and shellfish. It is easier to manage but some of the same concerns are still there since the severity is so high she is contact sensitive so cross contamination can be devastating for her.

I had a manager at a restaurant chain ask me “Why do you even take her out to eat if it is so difficult?” and my response was, “Why are you such a heartless jerk?”

Yeah, I know I shouldn’t have said that but I was pissed. It boiled down to the fact that she did not want to deal with making any accommodations because she was just too busy. I won’t mention the restaurant’s name because the owner was more than amazing at helping squash that whole mess, told me what I should request in the future, gave me his personal cellphone number and gave us a gift card. We haven’t had problems since.

It is not easy going out to eat with children in general and especially with a kid with food allergies. But, I don’t let one crappy experience determine our choices. I want my kids to do what everyone does: Pay way too much food to eat out!

I’ve learned some very important things along the way so I hope that it’s something that may benefit another. Here are my basic tips:

1.       DO YOUR RESEARCH!!! Ingredient lists are usually available online. If you plan ahead you can look these up or even contact them directly to get a good idea of what options you have. PRINT IT OUT!!! I can’t even say how many times I’ve requested plain pasta, explained the egg/milk allergy, and had managers tell me “All bread and pasta has egg and milk”. Nope dude, read your ingredients and oh by the way I have them right here! That brings me to…

2.       READ THE INGREDIENTS! I always request to see the ingredients or ask that a manager verifies this. Supplies can change and they often do. So, even if you have gone to the same place dozens of times always, very politely, ask to see the ingredients. Also, try to refrain from calling someone a jackass when you prove you were right. I usually say something like, “Yeah I had no idea that this would be okay until I got used to reading all the ingredients of everything I touched! So crazy!” … then I will mentally add “Jackass”. Speaking of people being Jackasses…

3.       DON’T BE A JACKASS!! I’m blunt. I’m crude. I curse when the kids aren’t listening and often slip up when they are… but I truly believe in treating others the way you wish to be treated! I am really nice to the hostess and the servers and the managers and the random people around us when we are dining out. If you go in with your research done, with a great attitude and the biggest cheesy grin you can muster then you will be better off. Hey, it hurts me sometimes to be cheerleader nice. If I can do it so can you!

4.       ALWAYS ADDRESS THE ALLERGIES FIRST!! If it’s the first time I have been in a restaurant I will always ask the hostess to bring the manager over to discuss food allergy options. As soon as our server greets us I will let it be known in a very tactful way. I usually try to do this away from my kids because, unfortunately, there are some jerks out there that have created bad situations and reduced my kids to tears. When you got hungry kids and are feeling the funk from someone it’s good to have…

5.       TASTE IT!!!!!! I won’t feed my kid something prepared for them unless I sample it first. Something has looked okay, I’ve been told it was prepared okay but when I tasted it holy shit there was butter on it. That would have been a trip to the hospital!

6.       ALWAYS BRING SNACKS, TREATS OR A BACKUP!!!! I always have snacks on me. I always bring some kind of sweet treat (We really don’t do a lot of sweets/candy so this is brought out when we might be in a pickle) If I am going somewhere new I always, always, ALWAYS bring a backup meal. Sandwich or rice balls or pasta will be the main thing I will bring then I can add fruit or sides from the restaurant. Sometimes, it sucks because they can’t be accommodating for your kid but you can bring your own food so they still have the sit down experience.

7.       SAY SOMETHING NICE ANYWAY YOU CAN!!! I’ve walked out of restaurants pissed off but could find something positive to say. If we have great service I like to take a few minutes to tell the manager and thank them for their time and efforts. They remember that. The staff remembers that and they usually get some kind of incentive for compliments. They like that! I also think it’s important that I show appreciation to those who go out of their ways to make sure my kid doesn’t go into anaphylactic shock!

8.       ALWAYS BRING EMERGENCY SUPPLIES!!! This goes without saying but I have to say it because it will make me feel better. Always bring Benadryl, Epi pen, wipes, inhaler or whatever you have to manage your child’s allergies. We do not leave the house without these things and especially to places where there is a higher risk of break out!

9.       LEAVE IF THE PLACE IS BEING A BUTTHOLE! It’s okay to leave. It’s okay to just go with your gut and not want to give someone your business. If it’s just the manager or staff then follow up with a very professional and tactful letter outlining your experience. I’ve had an amazing response when I’ve felt a situation was crap and I followed up with the owner. Some places I just won’t go to again but I appreciated the efforts.

10.   USE YOUR COMMON SENSE!!! I say this simply because I have been in situations where I know there is nothing my kid can eat but my friends/family/coworkers have said “Oh let’s just go anyway… we can figure it out.” Yeah, no…. not always! We don’t go to seafood restaurants because the likelihood of cross contamination is high and I do not think it’s worth the battle/risk to try to get the cook staff to accommodate. It’s just not an option. We also don’t usually go to buffets because even if they have a clean setup you cannot control user error! I see people putting the soup spoon in with the mac and cheese. Ugh.

11.   BRING CARDS OUTLINING THE ALLERGIES!!! I have a simple card that I bring with me that says “Hi! I have food allergies to (list them). Please don’t feed me anything with these in it or cook my food with these items! A clean grill and clean utensils will keep me safe! Thank you!” Sometimes the physical card eliminates error in translation.

12.   BIG HUGE TIPS ARE ALWAYS REMEMBERED!!! I have friends that are and have been servers and the big tippers are always remembered. I figure if I am going out I will always factor in a large tip for excellent service.

13.   BRING DISTRACTIONS!!! Toys, coloring books, books and angry birds seriously help the dining out experience. I’m not the type of parent that lets my kids bring electronic handheld games everywhere we go but sometimes I make exceptions. Think of everyone around you and don’t bring something obnoxious. I think my ipod touch is mostly used when we dine out and that’s when we get most of our levels on Angry Birds! Ha!

14.   DO NOT GO AT PEAK TIMES!!! You will have more luck with happy staff if you schedule your dining experience on off peak hours. They will simply have more time to devote to you

15.   ACCENTUATE THE POSITIVE!!! Seriously, keep it fun… keep it positive… don’t freak… don’t scream… don’t let the little bumps in the process put you in a funk. It’s not easy to dine out with food allergies so accept that but hope for the best.

These tips are by no means fool proof and are just my opinion. Do not expect flawless results by following my advice. I’m not responsible if any mishaps arise if you try to dine out. These are just friendly suggestions on how to make your experiences a little easier.

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