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.

 

 

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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.

Speaking up!

It’s time for back to school. Each year on social media and in the news, letters and stories are posted showing school nut bans. Each year, I cringe when I see these letters; I even wrote my own letter which many have seen on this blog.

 

I have been VERY clear and will remain very vocal about this issue of schools creating blanket nut bans.  Schools need to stop thinking that nuts are the only foods that can cause anaphylaxis. Anaphylaxis does not discriminate between a peanut and an egg or milk.   If a person is allergic to an item, it doesn’t matter. All allergies should be managed the same way. Equal policies must be applied to anyone with a food allergy; meaning if you ban nuts, you better be ready to ban any other food allergen.  The management for any food allergy is the same. By focusing only on nuts, we have marginalized the potential severity. I personally have seen people say the following, which is NOT true.

 

“Peanuts are much more dangerous than other allergens.” Nope, anaphylaxis does not discriminate foods!

 

“Well, the other allergens are not sticky or oily like peanut butter.” NOT TRUE!  Oil from pizza, cream cheese, powdered cheese dust that sticks to fingers, even Mayo for egg allergies and let’s not forget sunbutter –yup, same issue.

 

Well most kids outgrow milk and egg, so it’s not a big deal.”  While many kids do, they are not outgrowing it at the same rate as before, and even by age 16 many are still allergic. So NOPE.

 

“Well nuts are the more popular allergen.” Actually, milk and egg are the most common allergens. But it really shouldn’t matter.

 

“Milk doesn’t cause anaphylaxis.” Yep tell that one to any parent who has had to have their kid hospitalized after milk anaphylaxis.

 

“But nuts are airborne.” Okay this one, ugh. First, ask any allergists and they will tell you it is extremely rare, not that it can’t happen but it’s not a common as some would lead you to believe. In addition, what nobody talks about is that any food can be airborne. It really depends on a few different factors. For example, are they crushing nuts? Are they heating up nuts? Fyi, the same goes for any other allergen–cooking /steaming milk, cooking fish or egg… all can cause the same issue. And powders like, peanut powder, powdered cheese, and wheat flour can also cause respiratory reactions. So, if that is the concern, then yet again the concern needs to apply to ALL allergens not just one.

 

“It’s a start.” Yeah… no it’s really not. I’ve been at this game a long-time! People, if it was a start, we shouldn’t be where we are now. We are in the same place for other allergens that we were in 15 years ago! Just my examples above show how little progress has been made for non-peanut and nut food allergies

 

So to those who have written and said I am angry, or that my message is not being delivered, or that I am one-upping allergens, or that I am anti-nut, I will tell you it’s none of the above. I am sick and tired of my concerns for my children’s food allergies and children like them not being heard.  I am sick and tired of peanuts and  nuts being the only allergies that are known about  I am tired of seeing peanut pictures for every story about food allergies. I am tired of classes getting letters about peanut/nut free rooms and kids with dairy, egg, sesame, citrus, strawberry  and other allergens not being included on that list. I am tired of having to fight the statements listed above, because people have been given inaccurate information.  I don’t like to see kids with other food allergies forced to limit their own diet further, when nobody is going to remove their allergens.  I don’t like to see kids with other food allergies being overlooked and excluded.

So as long as this keeps happening, I and a few others will keep speaking up, because every child with food allergies should have equal rights and be included, no matter what food allergy. Every child with food allergies should have people  just as concerned  about their allergen as people are about peanuts and nuts.  THE SAME RULES needed to manage a peanut allergy are needed to manage every other food allergy.

EDUCATE, SPEAK UP.

 

 

 

 

OIT And Baked Milk Is Not For Everyone.

A lot of hype has been going on about Oral Immunotherapy (OIT), and in the case of milk allergies, a lot has been written about doing baked milk, or even something called the milk ladder to resolve milk allergies.  Just this week, I saw many people on the internet say baked milk is the cure and it’s easy to resolve a milk allergy.
I am here to tell you that while studies show that somewhere between 75-80% of children with milk allergies can have baked milk, as decent amount can’t. I know this first hand. I have 2 children who are allergic to dairy.  My older son actually was a participant in the much talked about Baked Milk Study. We were so excited at the time that while my other son didn’t qualify, at least he did.  I was told his blood numbers looked good for a favorable outcome, His skin test look moderate, not awful. This baked milk study had 4 parts to it.  1st a baked muffin, then you would progress to things like really baked pizza, then you would work up to a pudding.   I knew we wouldn’t get past the pizza, but I was hoping we could get past the muffin so we could add it into his diet.  I was familiar with this idea as my younger son was doing baked egg at the time.  So, my older son started with the muffin, and all looked good.  Then, an hour and a half in, after he had eaten 70% of the muffin, he sneezed and started coughing and couldn’t stop. Boom. Epinephrine was administered. Thankfully, they were prepared and responded at the first sign.
What did we learn from all this? Well first, my son said he never wanted to do that again.  But we learned his milk allergy wasn’t going away. In fact, each year since, we run tests to see if there has been any change. We were actually not able to complete the study as his numbers have only climbed higher and higher since then. We were told it we could NOT try again.
It’s infuriating to see people think that if someone has a milk allergy, they can just start eating baked milk and the allergy will resolve, since for 25% of the milk allergic population that will not be the case. People need to understand there is no 100% fix for food allergies, despite what some have said.
I have put my children in any study that I thought could help. My youngest child has been in studies since he was 6 months old. That’s over 10 years.  My younger son is in the milk patch study now, with the hopes that might lessen his reactions. I don’t expect it to fully resolve his allergy.  I fully expect my older son to remain allergic to milk. Heck, I am allergic to milk so I shouldn’t be shocked.
So, until this allergy thing is all sorted out, please please, don’t tell people baked milk, or OIT or the milk ladder is the solution. While it may be successful for many, it also has failed for many.

Help To Raise Awareness!

May is Asthma and Allergies awareness month and because of that ,I am writing to you the media, as a mom of 2 boys who are anaphylactic to dairy and have other food allergies.  I am also a food allergy advocate and certified asthma educator.  
The topic of food allergies has been well covered in the press.  What has not been covered is the bizarre caste system that has emerged within the food allergy world .On the top of the pyramid, we have peanut allergies.   By now, every school, camp, etc has been declared peanut free and no responsible parent would dare send their child anywhere with a peanut butter sandwich.  Lower down, but still taken seriously, are the tree nut allergies.  And then we have all of the other food allergies – Eggs, dairy, soy, shellfish, wheat, fish.   Those who suffer from the non-nut allergies face 2 struggles.  The first is the same as everyone, getting recognition and accommodation of their food allergy.  The second struggle is to have their non-nut allergies taken as serious as nut allergies.  
All of this seems to be driven by this completely false belief that nut allergies are more severe than others.  How this widespread belief came about is one of the big mysteries I cannot get to the bottom of.  Nuts are not even the most common allergen – Dairy is.  And the truth is, any allergen can cause anaphylaxis .   You can’t imagine​ the struggle my kids face trying to get their allergy taken as seriously as nut allergies.  Essentially, nobody takes other allergens as seriously, from schools to birthday parties, etc.  They are the second-class citizens of the food allergy world. 

I have so much more to say on this topic.  I hope you find it interesting.  Given that May is National Asthma and Allergy Awareness Month (http://www.aafa.org/page/asthma-and-allergy-awareness-month.aspx), this could be something to explore.



Sincerely,
Harriet
@allallergiesmatter on twitter.
Or @harriet75 on twitter

The New Food Allergy community.

I keep seeing blog posts talking about the need for the food allergy community to stick together and support each other. Many posts have talked about “scaffolding” and if you don’t agree with something, don’t comment, and keep on “scrolling”–we need to present a “united front”. A recent post talked about how we are all in this together and we need to hold each other’s hands, and that again we should not be pointing out the individual struggles and disparities within the food allergy community.

As many of you know, I created a Facebook group called “Positive Parenting with Food Allergies” about a year and a half ago when it became clear to me that speaking up in defense of people with the other top 8 food allergens that didn’t happen to be nuts and how other allergens are not taken as seriously even by a fellow food allergy parents.  I constantly get messages from people telling me how they’ve spoken up in other groups and they’re afraid or they have been banned or they have been shamed for saying “Hey wait a second, my kid needs to be protected too” or “Your allergies are no worse than mine and they’re not being treated equally”.

We also all know that about a month ago, some people in the food allergy community tried to make a big deal about the fact that I wrote about how all allergies matter for a blog post on a peanut board supported site. The fact is my goal was to educate about our food allergies and not just peanuts ,but a small handful of bloggers tried to make that into a big bad thing. I received no compensation, except the opportunity to raise awareness that other food allergies are equally as dangerous.

So I got to thinking, when I and other old time food allergy parents started out on this food allergy journey over 10 years ago, The world wasn’t like this! Why has this happened? Why do we feel that we need other people to hold our hand through this? Why do we need constant validation? Why do we need to be told what we should be doing or what we shouldn’t be doing?  Why are people posting pictures or reactions asking what to do? This was not there 10 years ago.
10 years ago we didn’t have 504 plans as we do today or if we did they were very limited. We didn’t have people freaking out over the struggles of daily life. We did not have people running on Facebook asking what should I do about this? And “I doubt my doctor” and “I don’t like the advice I was given” and “I need a peanut-free everything environment.” None of this existed.

Talking to other long time food allergy parents, we all have said “Wow! We didn’t have any of this and our kids are totally fine! We were our children’s advocate. We spoke to our doctors. We read books. We found what worked and didn’t work for our kids. We had communication with the school. We spoke up when there was an issue, but also knew we couldn’t ban things. We did not rely on information from other people that we never met to tell us what to do, or what we shouldn’t do.”

Now, people say to me, “but your group is a support group.” Well I never really saw Positive Parenting with Food Allergies as a support group but I did see it as it is a place for us to share our experiences. To say: this is what I’ve gone through, this may be what you’re seeing, and it’s OK to feel this way. Many of us did not see the need for this to be handholding as many in the food allergy community would like. Many seem to have a need to be validated.

The big concern I have seeing all these posts is the big question where does the personal responsibility aspect come into play? 10 years ago it was nobody’s responsibility but my own to advocate for my child. I did not expect the world to become free of both my boys’ multiple food allergens. I knew about limitations. I know how to make him safe as possible, but it was my job to make sure he had safe food at birthday parties and make sure that teachers were trained and knew how and when to give the Epi pen.  It was my responsibility to communicate the needs of my child. It was my responsibility to educate the staff about food allergies and that was fine. It was my responsibility to educate my kids not to take food from anyone else but me. It was my responsibility to teach my children how to read labels early on. It was my responsibility to educate my children to know that their environment would never be allergy free. When you have multiple allergens, there’s no way that you can set up a situation where we’re going to have a free everything and you will be totally safe. It was my responsibility with my kids. We go on trips, and to make sure that the trips were safe enough, if that meant that I have to cook and send up meals, or if I had to call the place in advance, that was my job—I did not consider it anybody else’s job. I did not feel discriminated against.

It just seems to me that the food allergy community has become a lot of complaining and saying the world is against us vs taking control and doing what many of us did, and make the world work for us and figure out how, instead of saying “I’m being discriminated against”, “my rights are being violated” or creating false fear. Many of us who have been doing this a long, long time didn’t have any of these things and our kids were totally fine. In fact, some might be able to manage their allergens better because of it.

As social media has become part of our daily lives I’m afraid we’ve lost a sense of controlling our own daily lives.  We are now relying on social media to tell us things on how we should proceed with food allergies.  We are now relying on social media to tell us things on how we should proceed with food allergies. We must remember, however, that the people on social media do not know the needs of your individual child, do not know your school system, and they do not know your doctor. What one child needs may not be applied to all children with food allergies, and we must remember that.
Perhaps that is why there is this sort of control going on and that anybody who speaks up against certain things in the food allergy community are shot down. It’s not just me. I know of others because if more than one voice speaks up and says “wait a second”, it causes people to think and maybe even do some research. It’s very easy to go by just what people are saying but please, don’t go by what these food allergy groups or food allergy blogs or even some companies are saying. Be your own person! Do your own research, talk to YOUR doctor about your needs.  Teach your children early that they are in control and how to take that control.  And yes, keep speaking up if you see something you don’t agree with.

Update

I have been silent since my last blog post which was my initial response to SnackSafely’s attack on me. I took time to digest it all, and between rehearsal for a show I am in, and other matters that came up, I didn’t want to rush my thoughts. I do feel I need to clear the air on my side, because I can’t just let it be. It was too vicious, and yet again tells me so much about the food allergy world.
One of the things that is so troubling about the ordeal is that not only was I verbally attacked by SnackSafely but I also was mistreated by multiple bloggers who support SnackSafely. What is my crime to deserve such treatment? Is it because I don’t subscribe to the peanut being the one allergen to fear? That I don’t believe that schools should be nut free? Or that I believe that other food allergies are just as life threatening as peanuts? It’s true, I do have a different view on these subjects. Could it be that is what has them so very angry?
Truly, I wish no harm to SnackSafely, but I do have very valid concerns and I am only asking that they simply address them, nothing more. After all, the company is in a position to make a very positive difference to so many in the food allergy community. Instead, this company, chose to blocked me and anyone who disagrees with them. I find that disturbing. Shouldn’t a food allergy focused company want to hear how they can serve the food allergy community better? Why wouldn’t they?
The fact is, I was slandered by SnackSafely, over a 3 day period, in a very public forum–Twitter–for the whole world to see. When one person asked what proof SnackSafely had for the things they accused me of, they said they didn’t need proof. The head of the peanut board actually came on Twitter and stated that all that was said about me was not true. Still, SnackSafely refused to apologize or remove tweets. Let me add that I had been blocked by SnackSafely for months, ever since the Kellogg’s debacle. Then suddenly, the other day,, I was unblocked by them and a few of their friends, and just as suddenly, I was blocked again, now unable to see their tweets or to defend myself to them. It could not possibly have been a fluke since a blogger–close to SnackSafely–direct messaged me out of the blue just two days prior to this incident, to ask if I ever wrote for the peanut board. Coincidence? I think not.
I even tried to take the high road and sent SnackSafely an email, asking to work together for ALL people with food allergies, but first I needed an apology. Not an unreasonable request considering what had transpired on Twitter. I got a reply–would I be interested in a phone call? I wrote back that I would not consider a phone call until I receive an apology, and that the ball was in their court. I could not talk to someone who treated me so badly. Silence. And so, the tweets are still there, no acknowledgment of wrongdoing of any kind, and amazingly, some people think this behavior is acceptable. It is NOT.
Let me make it very clear what my issues are. There is no such thing as a “safe snack” list. I don’t like that the Safe Snack Guide by SnackSafely is ONLY a nut free list, which now just happens to have a few top 8 items on it. The fact is, it’s really still a nut free list and SnackSafely openly advocates for schools to go nut free but does nothing to raise awareness of other food allergies or the fact that every food allergy is equally dangerous. Anaphylaxis is anaphylaxism no matter which food allergy causes it. You can view my open letter to SnackSafely and see the direct quotes from their own web site. I am sorry to say, Snacksafely still has not addressed my concerns that I raised in my open letter.
I don’t want kids put in danger. The current setup with the Safe Snack Guide does put kids in danger, and my concern with the new school sample program is that it was again really nut focused. How will people without food allergy knowledge know that Skeeter Snacks are not safe for all with top 8 allergens when it’s just a nut free snack, and it actually contains 4 of the top 8 allergens? There has been more than one report of someone having anaphylaxis from Skeeter Snacks because they thought it was an allergy friendly snack for the top-8.
We must be very careful in the message we give, because not everyone is familiar with food allergies. The Safe Snack Guide has Pirate’s Booty listed as a safe snack, but that snack is not safe for a classroom with the dairy allergy. How would a staff member unfamiliar with food allergies know that? Ultimately, this is still a nut free list, and having the other allergens on it makes it confusing to others. That is my issue and I think that is a reasonable concern. So it seems because I am speaking out and looking out for the safety and awareness of all other allergens, I was slandered and attacked publicly. Is this really what the online food allergy world has become? My concerns are about the safety of my children and other children with food allergies. Isn’t that an issue of great importance to all parents of children with food allergies? Don’t we all just want our kids to be safe? Is it too much to ask, especially for a food allergy business and food allergy bloggers, that we at least listen to each other with respect? All allergies matter. Let’s show it in our actions, not just in words. No food or snack lists truly can be labeled “safe”…not with over 100 foods causing allergic reactions.