Gerardo : Hi Maddalena. On behalf of the Elijah-Alavi Foundation, thank you for extending
your time, for talking with us. My name is Jerry(Gerardo), and I will be conducting your
interview. So tell us, a little about you and your family?
Maddalena: So I’m just a regular mom with two boys, and a husband ( My third boy). Both of my children have food allergies. My oldest son Salvatore is 11 1⁄2. With him at the age of six months we realized something was not quite right. He had been exclusively breastfeed, and had never had any food yet. We were at an early education center, when he was six months old .We were attending a baby Picasso art class. They used pablum cereal and water as a base for the paint that we used. I immediately saw some redness around his face. Despite being a new mom with a six month old baby, and not having a lot of experience with allergies; I knew something wasn’t right.
Maddalena:As we were introducing foods into his diet he would have the same redness, with hives appearing. I will talk to the doctor, who assured me that all was fine as well. They told me his stomach is still developing. The doctor advised me to just give Salvatore a little bit of dairy, and to wait until next month, it will be fine. At nine months when I gave him cow milk, he had a full-on reaction. He was in his highchair putting his hands towards his throat and I realized that his throat was closing. I had some Benadryl in the house, in the case that he was ever bit by a spider or something, at the suggestion of other moms. After some persisting with doctors he was finally tested at 14 months and he was diagnosed with a dairy allergy.
Gerardo: Do both of your sons present with food allergies or food sensitivities?
Maddalena: When my second son, Santino, came along during the pregnancy, I continued to research how to avoid allergies. We were following some research coming out of Israel that children and the first few months of their lives that consume dairy were less likely to develop severe reactions to dairy later. When my son was 12 days old he tested negative for dairy allergies. I was able to give Santino a little bit of formula. Once, we visited a Starbucks and, Santino consumed something and it contained walnuts, and that’s how we discovered his allergy to walnuts. My youngest Santino is allergic to walnuts and pecans. Salvatore has always presented with dairy allergies. He has undergone oral immunotherapy (OIT) for his dairy allergy. He is also allergic to sesame, tree nuts, and most poppy seeds.
Gerardo: Can you explain a little about what OIT entails?
Maddalena: When Salvatore was about two years old we went to our allergist, whom I
absolutely love and respect, and they explained that there is this new treatment (OIT) on the
horizon. There has not a lot of research done yet, but we feel Salvatore could be a good candidate for it. We started exposing Salvatore slowly to milk through this treatment he started off with a drop on his tongue.
Gerardo: That must have been a little terrifying at the time.
Maddalena: It was. I remember just watching him, holding my breath as it was being done, and praying the whole time. We began by using milk powder and baked goods and measuring that out properly for the right amount of exposure and giving it to him. That moved onto a little bit of yogurt, and then to two actual drops on his tongue that we were administering. And now today Salvatore has a daily dose of two maintenance drops. The doctors were able to explain that this is not a cure but it is a way to maintain, so that if you were at a party let’s say he was able to have apiece of the cake or a piece of the cheese pizza without a severe reaction. We are about 99.9% dairy free in our home, but this process has just opened up our world, in terms of the fact that if there is a product that happens to contain milk, he can have that.
Gerardo: How long did this exposure process take ?
Maddalena: This is a dedicated process that took from the age of 3 to now, that Salvatore is 11 years old. You cannot miss a dose you have to monitor for any symptoms or any reactions. Out of this whole process he did just have one adverse reaction to his daily dose but there were other cool factors that were involved he wasn’t feeling that well to begin with he had not slept well the night before. That day I had to administer an EpiPen to him and call the ambulance. So we did have a few setbacks but now thankfully we are at the point where dairy can be around him and he doesn’t have as strong of a reaction to the dairy. If we are at any event now dairy can be present around him whereas when he was younger he could not even be around it he would react to us presents so that even if he touched the dairy product he would react to it.
Gerardo: So during this process of the OIT was ever ever an instance where he was exposed to dairy outside of the home, and how did Salvatore react to it ?
Maddalena: So that's what are the reasons I’m so grateful for this therapy. There was a time
when he was outside of the home and someone gave him hot chocolate that contained dairy
powder, unbeknownst to them. The OIT was a safeguard. He had a mild reaction to the hot
chocolate, had we not been doing this therapy that would have been a full on anaphylactic
reaction.
Gerardo: That is outstanding. I'm so glad that this therapy is working so well for him. Do your sons have any other related ailment that affects them as well in addition to the food allergies?
Maddalena: Some. When he was older, Salvatore was diagnosed with asthma at eight years old, and as a baby had eczema. His eczema eventually cleared up. Has asthma as well as his food allergy. Santino developed alopecia. We are wondering if there is a leak between the food allergies and the alopecia.
Gerardo: What are Canada's rules on food allergen labeling laws? Do you find that they are
different from the laws that we have here in the states? And if so, how so?
Maddalena: Yes. When visiting the United States ones I noticed that none of your bread products listed sesame. I was under the impression that these bread products did not contain sesame. In actuality, sesame is not considered a priority allergy.It’s not labeled on your bread products. Canada labels more allergens here than in the United States including sesame and mustard seed. Canadian laws require the top allergens to be listed in common language since August 2012. For example a label cannot simply just state that a product contains whey, it has to use the more common language of milk. Cautionary labels however are still voluntary here. In-store bake products do not have to list all the ingredients on their product which is very frustrating. Beauty products such as shampoos make up, lotions, soaps- do not have to label their ingredients which is very concerning.
Gerardo: How has the pandemic affected your ability to obtain allergy free foods and care?
Maddalena: With the pandemic, my primary anxiety centered around being able to obtain milk which for Salvatore, is just like a daily dose of medicine. I did not have a problem with finding milk products, thankfully. We did however have a little trouble locating dairy free products. Re-stick to the same products instead of venturing out to try new products during this pandemic just to be on the safe side. During the pandemic there are less gatherings where there’s always the need of precaution of a gathering having food products that contain allergens. There is a consensus in the allergy community, that if the world could only treat allergy awareness with the same precautions that they treat this virus we would be safer.
Gerardo: As an educator and an advocate for food allergies awareness, how do you see those two words overlapping ?
Maddalena: These roles overlap. I try to educate the amazing staff at my school. they are
always willing to learn more. I also educate my son at school. Education creates awareness. In May at my school and my kids school, We instituted a wear teal day event each year for allergy awareness day. The event at the school is then able to spark discussions at home.
Gerardo: Amazing, How did you teach your sons to advocate for themselves, and how do you advocate for your boys and other children in the school?
Maddalena: The boys have learned to advocate for themselves because they’ve had to. From a very young age we would read them books. They would read along and we would say the cat goes “meow”, and the cow goes “moo”. “No cow milk” for me, from a really young age. We drilled it into them. We train him to say no cow milk, going into early childhood education. We teach and not accept food from an early age. We teach them to read it before you eat it from early on. We really teach them to stick up for themselves and not accept food unless they read the ingredients or it comes from home. My son Salvatore who is now 11 years old branches off a little bit now to explore with his friends at the same age go around the neighborhood go bike riding. There are constantly new milestones to learn how to navigate as a child with food allergies.
Gerardo: How are the food allergy laws for schools in Canada?
Maddalena: I remember when Sabrina’s law came into effect**. I was a brand new teacher. I
remember when they began to come in and train us as educators and put allergies. Each province has a different set of laws and guidelines. I can speak for Ontario. Sabrina's law in Ontario mandates that all staff in a school must be trained in signs and symptoms and then the use of EpiPen. It also ensures that all children have a plan in place. We have
individualized allergy and anaphylaxis plans of care. These plans are very thorough. It goes into what the responsibilities of the parents are, the responsibilities of the teacher, the principal, the staff and the child. Everyone has a role-play. There’s a barrier in the fact that the Waze each province is required to train is not uniform. This is where a change is needed. The laws are amazing. And it’s incredibly sad that it takes such a tragedy for people to take action. I do feel that the train needs to be better for example here we do not have any certified trainers.
Gerardo: Can you elaborate on how you feel the training could be better?
Maddalena: Each school board (districts) those things a little differently. It’s mandated that
school employees must be trained. It is not mandatory how we need to be trained. My district has an 11 minute video, yearly video. You look at slides, and then you answer some questions. I see a huge problem with that. What is missing from that equation is the accessibility to a hands on trainer in front of you. We would benefit from a qualified instructor coming in and showing us how exactly to use it EpiPen.
Gerardo: Do your sons carry their auto-injectors in school or do they need to leave them with the nurse? Are they allowed to use them on themselves in the event of an emergency? Do you have them bring their lunches to school or do they eat a specific meal prepared for them?
Maddalena: They bring their lunches and where the auto check is around the waist as well. How do Sabrina's law is that a few pans have to be fully accessible and open faces in the school. Staff has to be fully aware of who has a food allergy and where these injectors are located within the school.
Gerardo: When it comes to Bullying in schools, Have either of your son's experienced any
bullying, especially food allergy bullying? How has it affected them?
Maddalena: I haven’t witnessed anything as a teacher. My older son did experience some
bullying. He did not tell us the right way about it. He was able to manage it on his own by
walking away.
Gerardo: What advice do you have for parents and teachers when it comes to food allergies and food allergy management?
Maddalena: The schools and the families need to be in constant communication with each
other in partnership. Parents need to get to know the educators. Any school activity that may involve food needs to be communicated with the parents so that the parents can make arrangements. Food related activities should really be minimized. There are many other ways to celebrate without the inclusion of food. Some of our boards have a strictly no food policy which for an allergy parent reduces the harm. Parents can be as present as they can be for example, becoming part of the parent council. Be aware of what is happening in the school and to be a voice for their children who need that voice.
**Sabrina’s Law -An Act to Protect Anaphylactic Pupils came into force on January 1, 2006,
and is the first legislation of its kind anywhere in the world. This law ensures all school boards
have policies or procedures in place to address anaphylaxis in schools, which includes
providing instruction to staff and guidance on the administration of medication.