Meet Nicky - the story of LAN
Meet Nicky - the story of LAN
“After receiving the news from Dr. Morel that our son had multiple severe food allergies and was at risk of anaphylactic shock, we left the Kannerklinik feeling numb and not knowing what was next and where to turn to. The clinical support from Dr. Morel and her team of nurses is excellent, however, there was no (known) peer support set up where it was possible to speak with and share experiences with other families learning to live a full life with a child with such severe allergies.”
The food allergy world was completely new to the Wallace family. Nicky believed that there must be others in Luxembourg in the same situation. But how to find them.
“The support group began in 2012 when, after designing, printing and distributing leaflets in all sorts of places - pharmacies, creches pediatrician waiting rooms, expat grocery stores, to name a few (social media was not as powerful a decade ago!), I nervously turned up at a venue I had booked in the commune of Schuttrange where I lived at the time not knowing who or what to expect! I was greeted by a significant number of people all keen to sit together and share their experiences, both good and bad, of being part of a household where one or more allergy sufferers lived.”
“From that early meeting and the subsequent meetings, a core group soon formed. We went on to hold some fantastic meetings, including one attended by Dr. Morel and Dr. Morisset who were accompanied by some of the nurses from the team at the Kannerklinik as well as school nurses.”
“they all do manage, sometimes with bumps along the way, but they manage!”
“they all do manage, sometimes with bumps along the way, but they manage!”
“Sometimes I look back and don’t know where I found the bravery to do it! We (the core group) each had kids of various ages and I personally hugely appreciated hearing from those with kids older than mine how the kids managed as they grew older. And they all do manage, sometimes with bumps along the way, but they manage!”
Meeting in that format somehow ran their course as people became hungry to have the information online and to communicate via social media. In 2015 the support group, previously known as “Support Group for Parents of Kids with Allergies”, decided to become an ASBL.
“LAN only came about when the change from the support group format to the ASBL took place in 2015. We made the decision to become an ASBL to essentially have more visibility and impact in order to help us achieve our goal of raising awareness of allergies, and to promote the inclusion of the allergic individual in all aspects of every day life, while continuing to offer non-medical support and advice to those families and individuals who find their lives impacted by allergies, whether their own or their child.
The Wallace family’s allergy journey (written in 2021):
“anything is possible, it just takes more planning”
Our journey into the world of food allergy began in early 2008. Our son was born in November of the previous year. By February his skin was covered in eczema. He then had some colds which quickly developed into bronchitis. Sam was fully breast fed for the first 6 months of his life. As we introduced solids we noticed that sometimes he would cough and then vomit after a few spoonfuls. Was it a texture thing we wondered? Our pediatrician had no answers at this point. I then became aware it was each time he ate jars of baby food which were ‘green’. This made me look to the ingredients. The common link was peas! I returned to our pediatrician with this finding. Surely no one can be allergic to peas I said! He soon put me right and told me people can be allergic to almost everything! He proceeded to do some skin prick tests in his office ahead of referring us to CHL and to Dr. Morel.
A new mystery appeared – often if Sam ate bread he would have the same reaction – coughing, chin itching and then vomiting. BUT, he could eat Weetabix with no issue which suggested it not to be a wheat allergy. I start to look to ingredients of various breads we used. Common link: pea or bean flour (used to add “bulk” at a low cost in combination with a reduced amount of wheat flour).
We waited for our appointment with Dr. Morel which took place when Sam was around 1 year old. More extensive skin prick tests and blood test confirmed Sam to be allergic to the following: eggs (cooked and raw), tree nuts, the ‘leguminous’ food group (peanuts, peas, beans, lentils, soya, chick peas and so forth…) and seeds.
We left Dr. Morel’s consulting room that day feeling very frightened, very alone and with a prescription for all that constitutes a “trousse d’urgence” - namely: adrenalin injectors, antihistamine, cortisone and a Ventolin inhaler.
Fortunately, the egg allergy was later to be removed from the list after a successful egg introduction program led by Dr. Morel and the nurses at Kannerklinik.
As both my husband and myself have pollen and environmental allergies as well as asthma, the allergy world was not completely new to us. Food allergies were however.
And so the never ending process of reading ingredients labels and explaining about Sam’s allergies to crèches, to schools, to Maison Relais, to soccer camps and so forth began. Along the way I succeeded to inject myself with adrenalin when demonstrating how to use the device at a soccer camp - by pulling out a ‘real’ device that was lingering in my bag waiting return to the pharmacy instead of the trainer…!!!
Sami is now approaching 14. We take no risk and chose to focus on the foods he can eat rather than on those he can’t. Now he attends Lycee it is actually easier to manage as he takes his own lunch to school. No more checking Maison Relais menus and discussions with the chef (who I add was brilliant)!
A worry for me when he was in the early years of schooling was that he would eat something then feel bad / strange and not tell anyone. Thankfully this never happened. We would however quite regularly receive calls from school and Maison Relais to say Sam’s eyes were itching and red. The cause was sometimes known (e.g.: other kids eating pea soup, playing with a farmyard made from lentils and other pulses, or tree pollen around March time…) and sometimes unknown.
An occurrence from those early schooling days that I hope I never see happening again was a visit to school by “Kleeschen” who proceeded to throw peanuts at the child filled audience. I shivered. I still shiver when I think about it. Thankfully the airborne peanut particles caused no issue for Sami but for other children it could.
We have also navigated our way round tree nuts being used for crafts in classrooms and a teacher who insisted to eat their daily bag of mixed nuts while teaching with a nut allergic child sat in front of him..yes, really!
Please know that I am only too happy to discuss any part of the journey of raising a child with multiple food allergies if it can help someone else navigate the way. I know however we still have some way to go as Sami now becomes more independent through the teenage years.
For now when he is out with his friends he often sends me photographs of ingredients lists and asks “are these ok?”, or now we are moving towards “are these ok, I think they are but I want you to double check”. I am sure soon he will be confident enough to not ask for my “double check”, until then, I am happy he asks me.
A few of the friends he spends time with most have also come to our house to be shown how and when to use the “trousse d’urgence”. Another step to becoming independent - surround yourself with good friends!
Through our allergy community in Luxembourg, I know several parents of children who have successfully navigated the teen years, into the student living away from home years, and beyond. When I have moments of worry or doubt for what Sami has to live with and manage, I always think to these families and I am forever grateful to know these families and to have seen their children transform into young adults successfully living and managing their allergies independently.
As a wonderful teacher that Sami had in precose once said “anything is possible, it just takes more planning”. So very true!!
The Wallace Family
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