Hello. My name is Filipa and I am a proud mum of three beautiful little girls.
Carmo is the eldest and is now 6 years old. Carmo has a life threatening allergy to cashew nuts and pistachio.
We discovered Carmo’s allergy when she was two years old. Carmo was a happy baby although she was often with watery eyes, constipated and suffered from eczema on her face for a long period (only went away with cortisone). When she was bitten by mosquitos she had always very big skin reactions and once we ended up staying at home with her for several days and the pediatrician checking her every day. Carmo was our first baby, so we took all these little things as “normal” baby things. It was January and Carmo had just had her second birthday and we went visiting a friend for lunch. He had a bottle of cashew milk on the kitchen table and I asked him to try. Carmo was seated on my lap and demonstrated signs that she wanted as well to try and trying to grab my small cup. So I had some to check if tasted well and gave her a bit to try. I just had the cashew milk touching her lips, maybe a drop or two and Carmo immediately started to be red all over the face and neck, wanting to vomit. I immediately ran with her to the bathroom and washed her mouth, face and just kept holding her. I knew something was not OK, I could feel it in all my body and heart. I gave her lots of water and kept holding her. I thought we need to go to the hospital if she doesn’t get better! After half an hour or so she got calm and let’s say “normal” again. I was really disturbed with the event and completely in the dark as I had never seen something like that. We decided then to go and see her pediatrician that told us immediately that she needed to see an Allergist as it could be a serious food allergy.
We did not know anything about food allergies and in our families and entourage we did not know anyone with allergies nor what actually meant to have and live with a food allergy. After seeing an Allergist, we had an immense list of do’s and don’ts and medication prescribed, including the adrenaline pen. We were overwhelmed! What does this means to Carmo, will she have a normal life? Will we, parents, have a normal life? All these questions and particularly myself a lot of guilty questions like what did I do wrong during the pregnancy, was it because of something that I ate, or that I did not ate, or was it because of my thyroid issues????
After a while and with the help of my husband, I realized that I was putting effort where I should not and should focus on doing what I love as being a mum and that is to educate my baby for life, a fulfilled, healthy and happy life with or without a condition. At the “Crèche”, she had been put on a special diet “all allergen free” which Carmo was not happy with and was definitely not eating well (by the way she loves food!). So I decided to investigate what would need to happen so that she could have appropriate food and the answer was that she would need to tolerate traces of the nuts she has an allergy to. We tried here in Luxembourg how we could know her tolerance, but unfortunately we learned the waiting list is huge at the hospital so we would need to wait months…That’s when we were referred to a Hospital in France, Nancy.
Carmo undertook food challenges to pistachio and cashew nuts for several weeks there (by the way, amazing doctors and medical staff!) and we learned she could tolerate small milligrams of both nuts, so medically speaking she could handle traces of both nuts without dramatic adverse reactions. Carmo did a great job at the hospital, and she was so small… We were super happy with the news! Carmo then started eating adapted food for her at the “Crèche” and no longer prepacked all free allergen food.
Then, we thought that maybe we could do something more…We know life with food allergies is riskier but only if we could somehow mitigate the risk or bring it to a certain level that would decrease the chances of something really bad to happen… So in a consultation already here in the Hospital in Luxembourg we learned about oral immunotherapy. We understood the daily commitment for Carmo and family, the risks of giving at home small but increasing doses of the nuts. The hope that Carmo would tolerate grams instead of mgs of the pistachio and cashew nuts at the end of the treatment, gave us the “fuel” to try. We decided to start the oral immunotherapy about three years ago, after Carmo being consulted and food challenged here in the Hospital in Luxembourg. We started with pistachio, because Carmo tolerates better pistachio than cashew nuts. Around two years we followed the oral immunotherapy and a couple of months ago we started with the cashew nuts. Carmo is still taking pistachio twice a week as maintenance dose, but now of 7g each time! At the beginning of the oral immunotherapy I was very afraid and I must say during her intake and the 2/3 hours after I was always with a heavy heart and a bit paralyzed…I believe this feeling sometimes passed to Carmo and with very small mgs of pistachio she was already making skin reactions, kind of Murphy’s Law applying! Nowadays, things run smoothly and Carmo is doing a great job. She learned to enjoy her quiet time (required before and after the intake of the nuts) and her sisters learned to respect that. I sometimes still struggle with the best way to act here as my first idea would be to keep her always away of something bad that could happen to her. But I know that is not helping Carmo and that my job here is preparing her for life, knowing her and adjusting to her needs. We talk a lot and openly with Carmo about her food allergies. She knows to what she has an allergy, she knows she needs to take her nuts everyday so that to train her body, “this is not bad for me, this is not bad for me….”. Carmo understands and practices to ask always before she gets some food if the food is good for her. Carmo asks can you read the label and tell if is good for me? When it’s not she accepts and we always try to find an alternative that is good for her. We also adapted our family diet and we cook a lot more, which is even healthier! We are enjoying every single day of this journey with Carmo and learning a lot from her!
On a final note, I still remember today when we asked to the Allergist why food allergies exist in the first place and if a cure is available. The answer was NO to both questions. I was astonished! How come by now we do not know yet what triggers food allergies and how to cure these? Maybe the matter needs more public interest, more awareness, and more research… A special thank you to LAN for existing and its continuous work to improve lives!
Filipa