Why don’t my allergies count?

Why don’t my allergies count?  that’s what my kids wonder and I think that almost daily.   Tonight, the question was brought up again, As I infomed my boys ages 15 and 11 about Southwest removal of peanuts. My older child also saw some pretty upsetting comments on social media from other food allergy parents. Posts telling people you won’t react to powder dairy, or that you can’t have the same kind of reaction. Really upseting.

I have been accused of being angry at peanut allergy parents.  I kind of find that funny, as I was a peanut allergy parent  till my son was 6, and one of my kids is allergic to most tree nuts, as well as dairy and seseme. My other son is dairy, fish and beef.    I am not angry, I am tired of having to constantly educate people that my kids dairy allergy is as bad as peanut allergy, I am tired of the fact that while the world will bend over backwards for a nut allergy they won’t for a dairy allergy.

My kids have had to learn  how to live  in a world filled with their allergens, and honestly at the end of the day, they are better off.  But at the same time it still stings that  pizza is at every party, Ice cream is everywhere,   My boys could not take the school cooking program due to the fact they cooked with milk, yet it was nut free.  It’s frustrating that many programs they  are in are nut free, but don’t exclude the dairy, the one allergen that has sent both of them into anaphlxais more then once.

My kids are getting older, they see that the rules are unfair , they have had to speak up and say  NO! they don’t have lactose intolrance, and no they can’t go to starbucks or sit in a pizza place as they will get a respiratory reaction.  So tonight when they saw me expressing my concerns about SouthWest, they said what about our needs?  Southwest billed this as something that will allow people with food allergies to fly comfortably, But clearly only if you have a peanut allergy. When I asked Southwest about other allergies they sent me a link that said they can’t accomadate other alleriges.

I know many feel this was a step in the right direction, but really it’s just more of the same. Just more of letting people think the only allergy you need to worry about is peanuts, and that if you don’t have the nuts your good.  A step in the right direction would have been a policy that included ALL allergies. Having auto injectors on all flights and trained staff.  Allowing for a buffer zone or allowing to have people change seats if someone is eating something one is allergic to, no matter what the food or animal.

This is just one more time I have to tell my kids sadly, to the rest of the world they don’t count your allergies the same. I hope one day all food allergies are seen as equal and rules and policys reflect that.

 

 

 

 

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Evil Rosanne!

 

 

I am sure many others were excited the   return of the Roseanne show on ABC. I have to say, it lived up to the hype it was amazing and I was so happy to see it and even my kids laughed . it’s been a long time since shows made me laugh like that. And then of course there was the food allergy drama.

Once again, much of the online food allergy community took to social media to express their horror. OMG! They made a joke about a peanut allergy!!! Once again, parents were using very strong words of anger. Then, there were others of us in the food allergy community that just watch it unfold, shaking our heads and saying “not again.” Then came the debate, in the food allergy groups on Facebook.

So let me point some things out. Rosanne is known for pushing the issue and being anti pc. This episode had a joke about guns in the home, fat jokes, gay jokes, transgender jokes, Trump and Clinton jokes. Nothing was off limits. This is who she is and has always been.

I think it’s important to note that the comment was made after said child was being bullied by the peanut allergy child. YES! Food allergy children bully other children be it for another allergen or other reasons. They are not above bullying. The child in the episode brought a knife to school. Now honestly, that worries me more.

18 million people watched last night, all the TV stations had asked people about reviews on it today and if you look at today.com or CNN or Fox News they all had people on both sides of the fence who didn’t like it for the political reasons you know, either supporting Trump or other political issues that came into play, but what I find very interesting is in all these reviews not one single person mentioned the food allergy joke. Unless you are in the food allergy community, the joke was not something people paid attention to.

Why are we so upset at the food allergy joke?
Yet, nobody is complaining about the derogatory comments at the child “ Mark.

We have to worry. If you go on attack, how many times are we going to cry victim every time someone mentions the words “peanut allergy” or “food allergy”? We are getting upset every Monday and Tuesday at this point, and sooo offended. It gives us of the appearance that we are whiners and that we are fragile, We are losing people paying attention to us.  Where has all the outcry gotten us? Nowhere! If you are not in the food allergy community, you don’t even care.

I asked on my personal Facebook page my friends who don’t have food allergies what they think of this of us complaining about Peter Rabbit, complaining about Roseanne, complaining about other comedians who use food allergies in their jokes, and honestly they see it as the food allergy community is being too sensitive and not understanding what it means to be a comedian. I don’t know about you but if you have ever gone to a comedy club, you go in knowing you are going to be made fun of. It’s brutal, no holding back. And guess what? That’s why people come! I wonder how many could handle it. At the end of the day, if all you have to worry about is a lame joke made at the end of a show, you very lucky! As for the food allergy community, we should be focusing on educating everyone about ALL food allergies and anaphylaxis, and stress access to epinephrine for all. Focusing on food allergy education has the potential to be more effective and create actual change.

 

Peter Rabbit, the new movie and controversy over food allergies.

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Perhaps my opinion will be unpopular, but I think the food allergy community is overreacting and actually ruining a good opportunity. Let me explain.

Nothing is new about this. Some of us have been around longer than others. In 2009, outrage and hate was directed towards “Cloudy with a Chance of Meatballs” because one of the lead characters swells from a peanut allergy. We then saw outrage again in 2014 with “Boxtrolls”, when the villain blows up because he is allergic to cheese. Both times we saw the same outraged reactions we are seeing today. What came of it ? Nothing. Except people thinking food allergy parents are too sensitive. All movies have something. It’s our reactions that matter.

I have watched social media. I read reviews of this movie. I wasn’t going to go as my kids were not interested, and frankly it looked dumb. That said, everything I have seen about this movie seems uninteresting and more suited for older children and young adults. For starters, the previews show Peter as a down right jerk! Food allergies aside, nobody is even mentioning the fact that prior to the food allergy scene, the older farmer dies of a heart attack and Peter does nothing. In fact, he rejoices. Why are we silent on that? This Rabbit is not a nice Rabbit.

Now, let’s address the food allergy issue. Okay, so Peter hatches a plan to kill the younger farmer with blackberries, one blackberry hits him in the mouth and he needs to use an epi-pen,which treats it. First, remember this is a movie! Nothing about this is supposed to real. That aside, we are missing a great teaching moment. The majority of people who see the movie may have no idea about food allergies, or even epi-pens. This could be a great chance to talk to someone on a rational level on what food allergies are, and why it’s so important to carry epi-pens with you, always. This could be also a great chance for kids who see the movie to talk to kids with allergies and get a better understanding of food allergies.

I have seen the posts made to Sony, and the comments on the Facebook page for the Peter Rabbit movie and some of them are upsetting. But do you really think this is going to change anything? Again, I refer to 2009 and 2014 outrage, then everyone forgets. So see the movie or don’t, that’s your choice. But I bet at least one of your child’s friends will see the movie, and will say something to them in school . Educating those who have no idea about food allergies or epi-pens is a better reaction to this movie.

 

A Food Allergy Mom Review of NETFLIX Show ” ROTTEN” Ep 2 The Peanut Problem.

I saw all over Facebook and Twitter on Thursday, the promotion of a new series on NETFLIX called ROTTEN it would cover food allergies.. So, I of course needed to watch it. I didn’t expect much. We have many food allergy documentaries on the market, how would this one be different? I had my husband watch with me as well so that I would get another opinion.
ROTTEN starts out with peanut farmers and talking about how the industry is in trouble because of peanut allergies. I liked that they made us get to know one peanut farmer and showed us exactly what their job entails. Peanuts are not this big bad poison that many make it out to be. It is an industry just like dairy farming and other farm based industry. The opening really helped established that.
Let me start with the positive side of this documentary, I loved Chef Ming Tsai! He was the best part of the whole show. He spoke very well, and he was the only one who highlighted and mentioned the top 8 food allergens in the United States. Chef Tsai also showed how it is possible to cook for people with food allergies so that they can go out and eat safely. I loved his Chef bible; I have the same kind of thing for my meals at camp. Chef Tsai should have been the focus of this documentary.
Now what I didn’t like. 4 main things bothered me. The first thing that will come as no surprise to anyone who follows this blog–the focus yet again on peanuts. As I stated above, Chef Tsai was the only one who mentioned the top 8, but the bulk of the story, actually all of it, was on peanuts. I really was unhappy with almost everything Dr. GUPTA said. First, peanuts are NOT the most common allergen, and using terms like “Most Severe” about peanut allergy undermines all the other top 8 plus food allergies. We have top 8 in the United States, meaning that 90% of reactions come from those foods. Milk allergies, fish allergies, tree nut allergies, egg, wheat etc. All can kill. Need I remind everyone in 2017 we lost 7 people to dairy allergies. Dr. Gupta is saying this to an audience who may have no clue about food allergies at all. What she just did was basically reinforce the idea that food allergies are just peanut allergy and peanut allergy is the only thing that causes anaphylaxis. I also have a huge issue with her talking about food challenges like she did. She is not a board-certified allergist. Yes, skin tests and blood tests are not perfect. However, as someone who has had her kids do many food challenges, I can tell you with the exception of the milk patch study that required us to do challenges, my doctor–our allergist– has never ever suggested we do a challenge to foods that looked pretty likely to cause reactions. We are talking about high IGE and high skin test numbers. Yes, food challenges are helpful for foods where it’s 50/50 or the numbers are low. Just saying it’s required as she did worries me. The final thing that concerned me was how they kept going back and forth with the story in England. Popping between people in the US and the story in England felt like I was watching 2 different shows. Also, it seemed to contradict all that Ming Tsai does. Let me also add that England has top 14 allergens whereas we have 8. It’s no secret that many of us fear the more lawsuits, the less likely restaurants will be willing to serve us. One final thing–they showed OIT as a treatment but made no mention of any other treatments being studied in the U.S. and there are many.

Overall, I didn’t find ROTTEN’s coverage any different then any of the other documentary on food allergies. I actually asked both my husband and a friend who doesn’t have food allergies what did they take away from it. I wasn’t surprised on what they both said. It’s a shame, because this could have been a great opportunity to educate on all food allergies. An opportunity which was yet again lost.

 

Year End Wrap Up and Hopes for 2018!

 

Well, 2017 has come and gone. I was looking over my posts from the year seeing if anything has changed.  The answer is No. I wish we had made even some baby steps, but things are exactly the same, if not getting worse.

Perhaps the most egregious thing about 2017 is the 7 reported deaths due to dairy allergies. The hardest hitting one for me was the little 3 yr. old here in NYC, who died after eating a grilled cheese.   In the UK, a schoolboy died after having cheese in his mouth as well.

Yet, we still witness the refusal of many in the food allergy community to accept that other allergies–aside from peanut allergy– are just as dangerous.

So, what is my hope for 2018? I know most of this can’t happen, but if I could wave a magic wand this is what I would want:

I would love media attention focused on allergies other than nuts, be it during food allergy awareness week, month or any other random day. I don’t mean a poster, but actual stories.

I would like to see schools establish food allergy policies that protect and include all students and that are fair.  Most importantly, policies that educate that any food is dangerous and how to respond in an emergency.

I would like to see more education on the dangers of dairy, and that it’s NOT lactose intolerance.  Same for those with wheat allergy. It should not be confused with celiac disease.

I would expect to never see in a food allergy post the following “peanuts are more dangerous”; “their oils get everywhere.” Peanuts unlike other allergies can be airborne” when a parent is explaining how their child with another allergy deals and how their allergy is never removed.

I wish the food allergy community was filled of more people like Linda Coss, Lynda Mitchell, Anne Munoz- Furlong and others like them. They were active, but grounded and didn’t spread fear. They were multiple food allergy parents and they got the bigger picture.

I want to be able to say that we can share our experiences without being attacked, or silenced, or feeling embarrassed for sharing them and speaking up.  I don’t want to be told to scroll by if I want to share a different perspective. One cannot deny experiences others have had.

The final one is hard–the more we fight and sue, the more people are not willing to accept us. We need to find a balance. Demanding accommodations that are not truly needed for safety is a disservice to the entire food allergy community, and I fear more and more places will simply claim they are unable to accommodate.

Finally, I wish that all people who need epinephrine auto-injectors can get them and always carry them and that we won’t lose anyone to asthma and anaphylaxis.

Elijah

I have been sitting here for a few days, thinking over the death of a fellow New Yorker. a 3 year old boy, due to a dairy allergy. I have so much to say, so much going on in my head, that I had to stop and think about it all.

This senseless tragedy didn’t need to happen. Yet, I also can’t help but feel I saw this type of thing coming. And I am frustrated. And I am angry. Anyone who has read my other blog posts knows I have been very vocal about the risks posed by a dairy allergy. I have been very vocal about how the world knows about nut allergies and even accommodates nut allergies. The world doesn’t know food allergies outside of nuts. It’s sad but true. I have been a dairy allergy and food allergy mom for 13 years. I have had to fight to keep both my boys safe and included; even fighting within the food allergy community itself. I have long pointed out the media focus is on nuts only. I have pointed out that the “advocates” who we all see also are very nut allergy focused. Every time I would point out that nut bans don’t protect other allergic kids, or that dairy allergies were just as dangerous, I would be attacked, called names, even blocked. I have called papers like the New York Times, when they ran a story last January over flying with peanut allergies, the dangers and the struggles, and had to tell them they are overlooking the risks to those managing other food allergies. I have been told the risk with peanut allergy is greater in schools because it’s messy, because it stays on surfaces, and that peanut allergies simply are more deadly. I have been told I am lucky that my sons have a dairy allergy and not a peanut allergy because peanut allergy is deadly. I have been told that peanut and nut allergy awareness will help those of us with other allergies. That line has been said to me so many times over the last 10 years and nothing has changed!

Dairy can not be avoided anywhere. Indeed, it’s required in schools per the USDA. Pizza, ice cream and grilled cheese are the foods of choice for kids, and yet most don’t equate it to the danger of a peanut butter sandwich. Why? The risk is the same. So we who manage a dairy or other allergy have no choice; our kids are surrounded by their allergens, and that means they are always at risk.

So many questions about this tragedy remain, but we as parents must demand that the people who take care of our children understand the seriousness of the situation. We must have better education for anyone who works with a child of any age with a food allergy. We must ensure that each school has tight policies and procedures on how kids get food. We must make sure that each adult knows of every child’s allergy. We must have a no sharing food rule, and we must make sure that staff know how to identify and treat anaphylaxis. We can not have this conversation only be around nut and peanut allergies. It must be policies that cover and protect all.

While I don’t know the specifics in this case, I immediately suspected the child had asthma, and he did. That makes me think that the adults present may have thought he was just having an asthma attack. This points up another thing missing in our food allergy world–the conversation that having asthma is indication for a severe reaction. The great thing is, epinephrine can treat both conditions; but an inhaler alone will not treat anaphylaxis. It is vital to have a food allergy action plan, and that is what should have been followed. There is but a small window of time during which epinephrine will work. It must be administered quickly.

While we can’t go turn back time and bring back little  Elijah, I want people to see this tragedy as a wake up call and use it to educate about the dangers of food allergies other than peanut and nut allergies. We must treat all food allergies equal. It’s a matter of life and death.

 

 

Confused

I have a question, and I hope someone  can explain the rational to me.  As many know, I have been debating the need for peanut bans when no other food allergen gets banned the way peanuts are. As most know ANY food allergen is capable of causing anaphylaxis.  So what I find mind boggling and need help understanding is the following.  Why do multiple food allergy parents feel that peanut bans keep their kids safe?  Hear me out,  I am constantly told that eliminating one is better then none, or that peanuts are more dangerous.  I don’t get it, if your kid is allergic to milk and egg or wheat as well, the risk is the exact same! yet your okay being around them?

I guess I am wondering why is it that these multiple food allergy parents don’t see that they are all equal risk? How can you feel eliminating one keeps you safer? I just don’t understand. If your child had a peanut, milk, egg and soy allergy, how is sending them to a nut free school or a nut free class protecting them. Pizza and milk would be all around same with egg, So how can one say ” eliminating one is better then none” umm the risk is still present. Great so no nuts, but your child is still at risk of anaphylaxis from dairy, egg or soy exposure. Your child has equal risk.  So please tell me how eliminating just nuts keeps someone safer. Last time I checked you can’t chose which one of your allergens is more dangerous.

So please explain.