Together Family Magazine 08/24/2011
  I was recently interviewed by the editor of Together Family Magazine, a publication distributed in daycares nationally. The article, "Living Allergic", focused on what it's like to live with food allergies and anaphylaxis. Overall, the interview went very well. It was nice to see our concerns are being taken seriously. I hope this creates more awareness about allergies and anaphylaxis in daycares across the country.  1 Comment Daycares & Discrimination - Round Two 02/21/2010
So I was finally able to get the low down on the menu approval system for daycares. To get to the bottom of things, I had to pressure directors to give me a reason for rejecting Maya. Ninety percent of the time the reason they gave was the fact that they would feel safer if they could eliminate dairy products from their menu for that classroom, but that Public Health Services would not approve the menu unless it had milk in it. Thus the problem. Last week, I had a conversation with one of the nutritionists at Public Health - the people responsible for approving daycare menus. She informed me that there is no such mandate that dictates milk must be present in the menu unless it's for children under 2 whereby that is indeed the case. However, for children over 2 (i.e. toddlers and preschoolers) there should be no reason why the daycare cannot replace milk/dairy items with things that contain the same nutritional values. She also said that they work with some daycares to help adjust the menu to accommodate lack of dairy and that it has been done successfully before. It's baffling as to why daycares are reluctant to implement something that they suggested in the first place. I do not ask daycares to ban milk, eggs, or otherwise, but there have been daycares that said they would feel more comfortable if they banned dairy. These are daycares that already eliminated nuts/peanuts, as well as eggs, from their menu. Many of the daycares I've visited have banned eggs from the entire centre for the sake of one child, yet when it comes to milk, they will not do the same for my child. I am confused as to why daycares would not simply replace dairy with soy derivatives that are already fortified with all the nutrients available in dairy products. In the past year, more than one daycare has mentioned that they think it's "unfair for the rest of the kids" to ban milk from the menu. Yet, they do not think it's unfair to ban eggs, peanuts, or sesame for the sake of one child. What's really unfair is that my daughter's life is put in danger because someone else would be happier consuming what's poison to her. My little girl is not allergic to sesame or wheat, but I had no problem with daycares that eliminated both of those foods. It's perfectly acceptable for her not to eat wheat or sesame if it means another child will be safe. She can eat those items at home. It's a small price to pay to make sure that children are safe. Is my child less worthy than those kids? I don't ask these daycares to ban any food items because I prefer education about cross contamination over banning, but if those daycares are the ones pushing to eliminate the item, what right do they have to decide that my daughter's safety is worth less than the safety of other kids? This, in and of itself is discrimination. It's simple; I believe any allergic child's safety is worth more than the convenience of eating an allergen. With that in mind, I believe any daycare that thinks otherwise has no business being in the child care industry.  Reaching the Boiling Point 01/27/2010
I have become increasingly annoyed and frustrated by the lack of support for children with life threatening food allergies. I've developed a lot of resentment, specifically towards family and friends who continue to disregard my daughter's safety and particularly the ones who seek to exclude her from family events by making sure that the place is unsafe for her to be present. I am astounded by the number of daycares I've contacted who rejected my child because "her allergies are too severe" or because "they have other kids that demand their attention". I have talked to almost every daycare in our city, and the ones who have spots available, are not interested in taking in a child with severe food allergies. Some daycares accepted her but were unable to keep her safe. Others accepted her for a short duration and kept her safe but then kicked her out because "she was too much work". I am equally frustrated by the number of allergy organizations out there that claim they seek to improve the lives of allergic Canadians. The AAIA, which holds itself in a position of dispensing accurate information about allergies and asthma, has failed to answer my questions about the status of allergic children under the Disability Act and programs for special needs children. They really haven't done much to improve my quality of life nor that of my daughter's except for providing me with some allergy brochures. The only organization in Canada that seems like it is actually trying to make headway for allergic individuals is Anaphylaxis Canada. They still were unable to answer my questions, but at least they put the effort in trying to research the information with me. The information they provided was not very useful and led to a lot of dead ends, but they get credit for trying. Both the AAIA and Anaphylaxis Canada suggested a number of ideas until I stated I live in Nova Scotia. There is a fair bit of support in other provinces such as Ontario, but when it comes to places like Nova Scotia, we live in the dark. Equally stupified, are the people at Community Services, who interpret the letter of the law when it comes to allergic children. My little girl, who lives with severe life-threatening allergies to dairy, eggs, and peanuts, is not covered under the disability act of Nova Scotia, because a) she is not mentally challenged and does not have an intellectual disability (yes, those were their words) and b) she does not have a physical disability in the sense that a body part is non functional or partially functional In short, they think she is a special needs child but the law does not allow for any type of accommodation under that specific criteria. There apparently is some sort of dispensation process that is available only to daycares who wish to take in kids with special needs, but it's done on a case by case basis. The application process and use of the funds are determined solely by the child care centre. The funding is not specific to any one child or diagnosis, i.e. if the child were to move to a new daycare centre, the funding remains with the old daycare centre. In other words, the day care centre decides how and when to use those funds and for whom. With the exception of one or two, daycares in Nova Scotia are unequipped to handle allergic children, and those that are, do not understand the nature of allergies and cross contamination. I am told that Ontario had the same problem a few years ago, and was not interested in putting the effort to keep allergic children safe. But Sabrina Shannon changed all that, for Ontario. I'm afraid that things in Nova Scotia will follow a similar course and will only change if someone dies of anaphylaxis. I just hope it's not my daughter.  Dander 01/25/2010
I am amazed by the number of people who do not understand the nature of allergies. It's a growing disease today, and is evolving very fast. Yet, people have no clue. For example, take that new daycare that we tried out this morning. You would think that when a parent mentions food allergies, pet allergies, and asthma, that people would clue in to the fact that just because the cat spends most of it's time upstairs, does not mean that dander is not around the house. What is dander? According to Wikipedia (my new bible), "dander is material shed from the body of various animals, similar to dandruff or pet pollen. It may contain scales of dried skin and hair, or feathers. It is a frequent cause of allergies in humans." Contrary to popular belief, pet hair is not what causes allergies; it's dander, i.e. the dead skin that flakes off of the body of animals. Dander is usually very small, fluffy and cannot be seen by the naked eye. It spreads throughout the atmosphere and gets transported on virtually everything. Dander particles shed from pets can stay airborne for hours, and in the case of cats, for months. The allergens in dander stick to clothing, and remain in carpets, mattresses and furniture even with meticulous cleaning. Therefore, someone with pet allergies can suffer from symptoms for months, despite pets having been removed from the home. In many cases, it's the person who has to abandon the place. Obviously, that new daycare is no longer an option for us - cat stays, Maya goes. With cats, it's even more of a problem because cat dander is not only in their fur, but also their saliva and urine. How does a cat clean itself? Yes, you got it. It licks itself clean and then jumps on your sofa, leaving all that residue of sticky saliva and dander together. Your allergic child decides to sit on the sofa, and moments later, itches at her eyes and sneezes. Anti-histamine to the rescue...  And the Daycare Saga Continues... 01/24/2010
Previously, I'd posted two articles about discrimination and our personal experience with several daycares. This is a sequel to those posts. Some people have suggested that I not include names of facilities or individuals. That may have been acceptable initially, but after contacting several daycares, and experiencing some, I think parents of allergic children have the right to know which daycares are safe and which ones aren't even if those daycares claim to be safe. Since the incident at Wee Care, and after speaking to the allergist, we all agreed that a home based daycare would be a more suitable environment for Maya because the number of children would be more managable than a bigger daycare. For the past few months we've been fortunate to have one of the best babysitters I've seen. Maya flourished in her care. She came to our house and was extremely cautious about bringing unsafe foods. We felt at ease with her and she truly understood how dangerous allergies can be. I provided all the meals and snacks; this was the only way to keep Maya safe. Sadly, this wonderful babysitter's services are no longer an option. We knew from the start that she would only be available for a few months and she'd given notice last week. She was incredibly nice to us and even helped us find the current daycare we are working with. But it didn't start out that way. It took a while before we found someone who was willing to accept Maya into their daycare. Our first contact was with Future Stars Learning Centre and they accepted Maya initially but with some trepidation (perhaps that's a lesson in and of itself). Despite that, Maya did very well. She was safe and we did not even have to give her any antihistamine. I provided all her meals and snacks. I provided all her gear and medication. I only asked that the staff make sure other kids clean their hands after consuming food that Maya is allergic to. To my disappointment, I got a call from the director a few days later. She asked me NOT to bring my child in again. I was informed that they could not keep Maya safe because they will be taking care of an autistic child. They did not think that they could manage an autistic child as well as Maya while making sure that other kids washed their hands after food. The director stated that the autistic child required a lot of attention and she did not have the necessary staff to handle all that. It seemed to me like Maya was being kicked out because they thought it was easier to take care of an autistic child. I was furious. What makes one special needs kid favourable over another? Perhaps in this case it was funding. But it didn't matter, the reality was, they had no desire to make it work. It was evident that the issue was not understaffing. The next day I found an ad online for the spot that my daughter had occupied. Upon further investigation, I discovered that the place would have been totally unsafe for Maya, as that autistic child needed to have his milk bottle with him at ALL times, and so the director could not keep the place clean. He's over 2 but his bottle is what soothes him and he needs to have it. I understand that; he's autistic. However, Maya was in the daycare before this information came to light. I felt that as opposed to make it work, the director chose to simply eliminate the option that seemed like too much hassle. In retrospect, someone who thinks of a child as a burden or hassle is probably not someone you want dealing with allergies and anaphylaxis. Since then I've contacted other licensed home based daycare facilities. Some were very apologetic and said that their families consume allergens everywhere in the house; they felt it would be unsafe for Maya. Some took the opportunity to educate me on being a good mother by suggesting that I should not be looking for daycare at all and that I should take care of my child myself, which begs the question why are these people in the daycare business to begin with. One woman even yelled "Not Interested" and hung up on me as soon as I mentioned that my daughter has severe food allergies. Still, others marveled at our ability to keep Maya safe with such severe contact allergies and wondered what we'll do when she goes to school. Amongst all that, we managed to find one home based daycare run by a very friendly woman. She agreed to take in Maya and expressed that it's no problem at all to work with us to keep her safe. She seemed a lot more accommodating than most. We quickly realized why. Her neice and nephew are allergic to peanuts, and she's had to administer the epipen to one of them before. Once again, the people who are sympathetic towards allergic individuals are ones that live with anaphylaxis themselves or their loved ones. We start that new daycare tomorrow; we hope it works out. I will be posting about our initial experience within the next week so stay tuned.  Discrimination: To ban or not to ban? 10/28/2009
Two years ago, I read an article about discrimination in daycare against children with allergies. I worried but I thought that by the time my little girl is two, things will have changed. Sadly, they haven't. Now that we are in the process of looking for daycares once again, we are bombarded with the same level of rejection. When the daycare staff discover that Maya has multiple food allergies which include milk, they tell me that they do not have the space. A few of them choose the more direct route and tell me that with Maya in their care the teachers would be too stressed to look after a child with severe allergies as well as other children. I can understand this type of rejection if I was asking those places to ban milk completely, but I am not. I am simply asking them to prevent cross contamination. Unfortunately, most daycares don't seem to understand what cross contamination is let alone how to prevent it. In our last visit to the Allergy Clinic, the allergist suggested that a home-based (smaller) daycare is most likely a more suitable environment for Maya due to her multiple allergies. He seemed to think that in a smaller setting, cross contamination would be easier to prevent. I shared that opinion with him, until I visited a few of those home based daycares. Indeed they are smaller; small enough that all children sit at one or two tables and Maya would be seated next to someone consuming milk products, where spills would lead to cross contamination. Toys don't get cleaned that often either. We have gone down that road before with the previous daycare. Maya was seated at a separate table and still cross contamination was an issue. I am constantly amazed by how the government boasts that our children are protected against discrimination and yet there is evidence to the contrary. It is true that daycares are breaking the law when they single out one child because of allergies and refuse to take her in. On the other hand, I think the severe lack of awareness out there is a primary cause of this discrimination. People who have a limited understanding of allergies often think in terms of black and white. In other words, they find it less stressful to ban the allergen rather than reduce cross contamination. Hence, the peanut free policies everywhere. I believe this is why banning ultimately fails. By banning the item, it becomes unnecessary to implement measures against cross contamination. However, this gives a false sense of security, because in reality, no one can ban an allergen consistently. There will always be the parent who forgot and put a peanut butter sandwich in their kid's lunchbox, or the one who sent their son to school with a granola bar that contained nuts. And even if the parents are conscientious, some kids will neglect to wash their hands and mouth after consuming peanut butter. Banning an allergen in a small setting may work temporarily, but in a larger setting, things are more complex and harder to control. You can control what 10 parents bring in to a home daycare, but you cannot control what 75 parents bring in to a big daycare centre. In our case, Maya is allergic to milk, eggs, and peanuts. As much as I would love the peace of mind that banning milk, eggs, and peanuts would give me, I would worry more about what would happen if someone accidentally brought it in while there are no measures to reduce cross contamination. So after much thought, I still believe that reducing exposure through prevention of cross contamination is the answer as opposed to banning. Those who cannot ban the item prefer to ban the allergic child instead. Removing milk from daycare menus and school cafeterias is almost impossible. Some parents strongly believe that if their child does not consume milk they he or she will die of malnutrition. Regardless of the reasons, milk is a food item that is widely popular and so there is always a swift and extreme response when even a suggestion is made with regards to milk. The dilemma in daycares is twofold. On the one hand, parents of other children demand that their kids drink nothing but milk while in daycare, and in many cases that fuels the "us versus them" attitude which banning introduces. On the other hand, daycare staff finds it too much work to try and reduce cross contamination, and that is because there is no federal or even provincial mandate that urges them to do so. This is why I wholeheartedly believe and support Sabrina's Law. It dictates that every school have an anaphylaxis policy in place. In addition, one of the contents of the policy is that it include "Strategies that reduce the risk of exposure to anaphylactic causative agents in classrooms and common school areas". Once again, the law is not actually banning the allergen, but it sets the expectation that it is the responsibility of school staff to reduce cross contamination. When a request becomes a law, people tend to be more attentive to it. Daycares seem to think that they have a choice when it comes to accepting a child with allergies. You don't often hear of a child being rejected from daycare because he's autistic, or has cerebral palsy. Those children are protected under the disabilities act, whereas children with allergies are not. Last month I put in some phone calls to several government departments inquiring about that very thing. The answers were vague and ambiguous. Other than Sabrina's Law, there is no definite law, that I know of, which protects children with allergies. In fact, the different departments I spoke to, were not even sure if children with allergies are protected under the umbrella of the disabilities act because allergies are not seen as a disability. Currently, daycares are more than willing to accommodate children with peanut allergies. Most daycares and schools are now practically peanut and nut free. Why is it easier to accept a child with a peanut allergy, yet reject one with a milk allergy? Perhaps because it's easier to ban than to work on reducing cross contamination. However, to me that implies that neither child's life is worthy of the effort, and that is simply unacceptable. What do you think?  A Personal Daycare Experience 10/19/2009
I've had several people inquire about my family's experience with daycare after hearing about the incident with Maya. In my emails I promised that I would publish a post about our experience. We are disappointed that it did not work out partly because that was the only daycare that agreed to accept Maya apart from one other that had no slots available. Most other daycare centres refused to take her in because of her multiple and severe allergies. She is anaphylactic to milk, eggs, and peanuts through ingestion and contact. The purpose of this article is meant to help prepare parents for the process of daycare in relation to severe allergies. It's not meant to be inflammatory or damaging to daycares in general nor to that particular daycare, rather a glimpse of what we, the parents of allergic children, are up against. This post is simply an account of the events that took place and why, in my opinion, things turned out the way they did. The following is a summary of the events that took place. For tips on how to ensure your child's safety in daycare please click here. The incident that prompted us to pull Maya out of Wee Care Development Centre On October 7, 2009 at 9:30 Maya went into anaphylactic shock at the daycare centre. Her teacher administered the EpiPen and called 911. By the time the paramedics arrived the symptoms had subsided and Maya was looking fine. They transported her to the IWK Emergency and we met them there. Maya's vitals were all checked and everything appeared normal, but the doctor decided to keep us there for observation. An hour later Maya's symptoms returned and within 15 minutes her body went into anaphylaxis again. She was given another dose of epinephrine and additional potent drugs to keep her system in check. For the next week, she was quite ill and symptoms of her allergy kept manifesting every day. The doctors had predicted that this may happen so we were instructed to continue giving her histamine blockers for several days. At this point, Maya is no longer exhibiting symptoms. I believe she has finally recovered. Her father and I are thankful. Why it did not work for our family Although we provided each staff member in the daycare with a package about allergies, I discovered very quickly that the majority of them just leafed through it and did not actually read it. Examples of that included, but were not limited to, storing Maya's soy milk in the fridge adjacent to the cow's milk cartons where there was milk residue even on the shelf. The teachers touched the contaminated soy container and gave it to Maya. They would then touch the food, so that Maya's hands and her food had traces of milk residue. She would have a reaction after incidents like those. That is the type of stuff I talked about in the session and I cited that example in fact, and also noted it in the documents. I explained to them how our fridge at home is segmented to keep Maya's food safe. Despite that, there was no care taken when placing her items in the fridge. I provided them with big plastic containers that contain Maya's safe food, and requested that all her food remain in those containers. Yet after the incident, I discovered that her food would come out of the box and would be put on the fridge shelves unsealed, where it could come in contact with other allergens. Many of the teachers in the other classes did not put the effort to make sure Maya is safe. They did not wash the hands and faces of children after food, and on a number of times Maya would have an allergic reaction after one of the kids touched her hands or touched a toy she was playing with. Instead of ensuring that teachers follow the protocol to wash all hands and face, the staff decided it was easier to eliminate playtime with the other class altogether. One thing that really bothered me was the clear delineation between job functions and the shirking of responsibility when it came to food. Maya's teachers were unwilling to read labels. They refused on the premise that it would consume too much of their time, thus leaving the entire responsibility on the shoulders of the cook who sometimes missed things because she is only in part time and cooks the meals for all the classes. On one of those days, Maya was fed chicken pot pie which contained Cream of Mushroom soup as one of the main ingredients. The label on the container clearly stated cream (contains milk protein). Maya had a reaction. Additionally, on that day the cook had neglected to mention that particular ingredient. We had an understanding that I would inspect all ingredients but on that day she decided to try something different. For the remainder of Maya's time in that daycare my husband and I came in early in the morning and each of us took turns inspecting the labels on all the food for that day. In times when Maya had allergic reactions there was never an informed point of contact. I had to run around after the fact to get the details of what had actually happened. Several times, the teacher who was responsible for being the point of contact had finished her shift and went home without relaying the information to anyone else. I often found resistance the next morning when getting additional information as the teachers would be busy with the other kids. In the two times the paramedics were called, when I asked what happened, the teacher notifying me on the phone would state "I don't know". The person calling to tell me that 911 had been called was unable to tell me exactly what happened to my daughter, and that someone else had that information. Although we provided the staff with the Allergic Reaction Review Form, it was seldom used. I had to have a meeting with the director to force the staff to fill out the forms, and after the fact I encountered some resentment. The teachers saw it as a demanding attitude and did not think it was necessary for them to fill it out. They preferred if I wait till the next day and gather the information myself. Maya was constantly getting hives after playing with the toys. When I discussed it with her teachers I was told that they could not wash the toys everyday nor keep Maya away from them. They said that the best they could do was wipe her hands down after she played with them. This was an unacceptable solution for us. To me that indicated that they are still not aware of how allergic reactions work, that the reaction may not be as severe or mild as the one before even if exposed to the same allergen in the same amount. Another meeting with the director made sure that the teachers understood that toys had to be cleaned before Maya played with them. Often when we spoke to one teacher about something, it never made its way to the other teachers. There was a visible communication breakdown even between the cook and the teachers. On more than one occasion Maya would end up missing her afternoon snack or given something insubstantial because the teachers were not sure if her food was safe. Since the cook was part time, she made sure to tell one of the teachers that Maya's food was safe, but because that teacher's shift ended at 2:00, she went home without telling anyone else about her communication with the cook. It made me wonder about the times when the food was unsafe but no one was told otherwise. The staff demonstrated that they still did not understand the dangers of cross contamination when they used dates to make date squares. Maya reacted after eating a piece. Upon inspection I discovered that the date container came from Iran. It was produced, packaged, and inspected by a company in Iran. The container itself did not have a list of ingredients, and the writing on it was not in English or French, rather in Persian. Although I had explained to the staff in our first session that unlabeled food is unsafe for Maya, no one took the time to ensure that the ingredients were properly labelled. The staff also did not understand that trace amounts of an allergen are just as dangerous as large amounts. On one occasion I was told that the kids would be having hummus (chickpea dip) that day. Upon inspecting the ingredients I discovered that the sesame seed paste (tahini) label clearly stated may contain traces of peanuts and nut ingredients. That is despite the fact that the daycare claims to be peanut free in their policy and guideline manual. On more than one occasion a number of teachers commented on how grateful they were that her allergist and I decided to give Maya Reactine every time she came to daycare because then they didn't have to worry about her reactions. They thought that if Reactine was administered before an allergic reaction that it would prevent the reaction from progressing to anaphylaxis if she was exposed to milk. I tried to have another session about allergies with the staff, just as a refresher course, but encountered resistance. I was told that they are all busy and that their schedules are hard to manage. The director could not get them to agree on any set time because they were not paid for being there for the session. The director would not pay them to stay for an extra hour, and the teachers were not interested in sticking around after their shifts. Parents of other children were particularly difficult to convince about allergies. We attempted to get 25 parents to our allergy session. Only two signed up, one of them had a child with allergies. The rest were not even interested in talking to me. Some of the parents complained about our demands and declared that if it doesn't affect their child then they are not interested in learning about it. One parent in particular scolded the director and stated that he would not read or sign anything without his lawyer being present. The responsibility of caring for an allergic child rattled some teachers. I remember one of the teachers responded to me with panic when I mentioned that Maya needs to take her puffer because she has a cold. She interrupted me midsentence and said that she cannot be with Maya on her own and is not responsible for giving her any medication and that I would have to find one of Maya's other teachers to take care of that. One other teacher in particular did everything she could to exclude Maya from all the celebrations. Some of her insensitive remarks included, but were not limited to, the claim that they had to change the date of the Thanksgiving party to a day when Maya is not there because they just can't take care of her. The same teacher approached me at another time about the Christmas party and demanded that Maya not be there on that day. She told my husband and I that if Maya really had to be there that they would rather she come for a brief visit to see Santa and then leave. I eventually approached the director about this because I had discussed it when we first enrolled Maya in daycare and she assured me that they would be working something out to keep Maya safe, and that such conversation between her and the teacher never took place. Either way, there was resentment and reluctance on the part of that teacher when it came to Maya. In general, Maya was regarded as a monster that was going to explode at any moment. Her teachers were very worried around her all the time. They were all afraid of the responsibility, and it ceased to be about Maya very early on. Most of her teachers were thinking about what the legal implications were for them if she got sick during their care. When Maya had a reaction, often blame was assigned to the cook directly and indirectly. Teachers were more than willing to point the finger at the cook rather than look at what they were doing to prevent cross contamination. The general attitude was that if it involved food then it was the kitchen's domain, and because Maya's allergies were food related, they saw those allergies as an extension of the kitchen's responsibilities. All in all, it was quickly apparent to us that the director and her assistant were absolutely on board when it came to Maya's safety. They did their best to make it work. The cook was also very accommodating. She changed whatever recipes she could to make them safe for Maya. Indeed, some things slipped through the cracks, but in all fairness, she always had the positive attitude and never made us feel like we were imposing. If I had to find fault somewhere, I would direct my attention to the teachers who did not appear to me as being a coordinated team willing to take ownership of Maya's safety while in their care. They had little confidence and refused to look beyond the scope of their classroom to create a safe environment for our daughter. I hope that anyone who took the time to read this has gained some insight and wisdom from our experience. I did not write this with malicious intent, but only in the spirit of cooperation and support to other families living with allergies. Despite the fact that this was a traumatic experience for Maya and us, it did not deter us from searching for other daycares that might be suitable for Maya's situation. In fact, I will be meeting with potential daycares within the coming week. One of those daycares has already taken in 5 other children with severe allergies and so far has been successful in keeping them safe. It was our first choice last year but at the time they did not have a slot open for Maya. After the director heard of Maya's ordeal, she has generously invited me to meet with her to try and work something out for Maya in the near future. I will be posting about that experience as well. I look forward to it being a more positive one. Other issues worth noting Even though Wee Care Development Centre agreed to take in Maya, they clearly were unable to keep her safe. The other issues worth mentioning are strictly administrative and service oriented, but they do shed a light on the perceived accountability of the daycare staff.
 |
