We have come a long way from the days when my little one’s diet consisted entirely of rice and Neocate. Awesome!!! 🙂 However, that also means -mommy has to be extra careful. So often, it seems like he can almost have everything and yet ‘not quite’! This is the stage when food-allergy sufferers/ caregivers cannot let their guard down. We cannot afford to forget that an anaphylactic shock brought on by a food allergy needs emergency care within 5 minutes. And that shock is equally severe whether the person is allergic to one thing or a whole host of things. So, even though one might have overcome a host of food allergies – just one severe allergy is enough to kill them. This fact assumes greater significance when we are not within easy access of emergency care – air travel being one of them. Add International air travel to the mix and it assumes scary proportions – imagine going into an anaphylactic shock when flying over countries the plane cannot land in or over the vast oceans and mountains – whoa! Sorry to sound apocalyptic but if that’s what it takes for us to be on our guard – so be it!
Mommy know best?! Oh yes! 🙂
In my opinion, managing multiple food allergies is part intuitive and part learned. The learning part – other moms (and to give credit where due, the occasional dad too!) in similar situations have given me awesome tips on a myriad of issues…thriving in the school system, handling social and emotional situations, new products available, alternative sources of nutrition and so much more. One such invaluable tip I received long back…a dairy-free diet for a 1 year old gave me nightmares about calcium deficiency till I remembered that as a kid, my mom would feed us Ragi, a nutritious grain commonly used in Southern India. Its biggest strength from my point of view – it is a gold mine of Calcium. However, till I could provide Ragi’s English equivalent name neither my allergist nor FAAN (Food Allergy and Anaphylaxis Network), could give me their input on if it was safe to try for a child with multiple food allergies. Even ‘googling’ did not help 🙂 Then a friend who had kids with nut allergies mentioned in casual conversation that it is called red millet. As it turned out, my son could have it – lucky us!
So, this section is dedicated to parents/ caregivers of children with food allergies from whom I have learnt so much. In each post, I will bring interviews with different parents/caregivers and their unique way of handling this challenge and useful things they have learnt along the way.
My first interview – with a beautiful woman and a dynamic professional. She is also mom to a lively and bright 9 year old girl with severe cashew nut and pistachio allergies. Thanks for sharing your story dear friend…
On a visit to India when this young girl was less than 2, the child had a small bite of a dessert made entirely from cashew nuts. Within minutes she broke into hives and started having projectile vomiting. I can only imagine the terror that would have struck the mom’s heart at that moment. Fortunately for the child a medical student was at home and had the presence of mind to immediately give Benadryl (panacea of all food allergy evils) and remove all the food particles still in the child’s mouth. Since then the mother stopped feeding all foods that could potentially contain nuts till she could meet an allergist back home in the United States. Tests revealed a high allergy to cashew nut and a medium allergy to pistachios.
The allergist told her that the numbers were so high that the chances her kid would outgrow the nut allergy was low but if she managed to keep the child completey nut-free, the child’s intensity of allergy may come down over time.
Rarely have I seen a mom embrace this challenge so completely. She swore that she would keep her child’s environment as nut-free as humanly possible. So, began mom’s journey to keep her little girl safe…all nut products in the house were discarded and every item brought into the house was produced in a nut-free facilty. But, how did she handle challenges that were beyond her complete control…
Family and social circle:
Most of her family and closest friends were extremely understanding but as happens with most of us there were some who just dint get the gravity of a severe food allergy. With a tear in her eye, she recalls many a party hosted by close family members (some of them doctors themselves), where she had to stand outside with her little one because there were bowls of nuts carelessely lying around everywhere. To maintain amicable family ties, she continued attending such parties though the safety of her child was jeopardized. Sense dawned when her colleague made a profound remark, ‘You are the only one who can stand up for your kids and you should.’ From that moment on she realized that her daughter came first and followed a few simple steps:
1) Had an honest discussion with her friends and family members who just dint ‘get it’. If they still chose not to understand, she stopped socializing with them or ensured that the social meet was at her place where all the food was safe. She did lose friends along the way but were they even friends in the first place?!?
2) Changed her socializing style to mostly one-on-one meet-ups with people who understood her predicament.
3) Started focussing on quality family time. 4) She had interesting input on how she helped her husband become a caretaker. It was hard for him because as the youngest child in his family, he was used to being taken care of and not the other way around 🙂 He understood that she was not being paranoid but careful. But to help him ‘get’ how hard it was to be constantly vigilant – she left the dad in charge of his little girl alone once in a while so, he learnt to take care of her. She also had the allergist explain to him at length that he should support her in the care of their daughter.
School: Aah – scary to leave our kids alone amidst potential bullies and without the personalized care they get at home! With a 6-year old about to enter the gigantic public school sytem – her input was invaluable to me:
1) Her first step was to meet with the principal of the school who explained in detail the facilties available in the school including nut-free tables, teachers trained in epipen (epinephrine shot) usage and their strict anti-bullying policies.
2) She has also kept close contact – through emails and personal meetings with teachers. This has helped the teachers ensure the child’s safety especially during class parties et al. This has not always been easy because some teachers did have a know-it-all attitude and found her vigliance extremely annoying. So – all you moms out there…Dont get intimidated. Its your child and you have the right to keep him/her safe.
3) This mom has ensured that any foods used in the class like jelly beans, dried beans, pasta, cereal etc. as counters for math, articles for art projects etc, in manufactured in nut-free facilities. Now that’s what I call a vigilant mom!!
4) Became an active part volunteer so she could be there for all class celebrations and help the teacher keep the parties allergy-friendly.
5) She has taken jaw-dropping measures to ensure her child safety and also does not feel any different from her classmates:
- She often offers to bring the class treats so that all the children eat the same thing.
- At the school food table she along with other moms having kids with food allergies have made sure that the first few items are allergy friendly so all the kids can join the same line but leave the line once the other items start. So all the kids feel socially included 🙂
- When her daughter was in Kindergarten, she was the only one sitting at the nut-free table which was traumatic for the little girl. So, this amazing mom would take her lunch break at the nut-free table with her daughter. Dont know many moms who would do that. In fact, it dint even strike me till she mentioned it.
She tries to cook at home as much as possible where she can be 100% sure of zero cross-contamination and the ingredients that go into the dish. However when she does dine out on occasion: 1) She always calls in advance to ensure that the restaurant has some safe choices for her daughter.
2) Ensures that the restaurant follows safe practices to avoid cross-contamination.
3) When dining abroad she tries to stick to known chains whose food practices she is aware of like Pizza Hut and McDonalds.
4) Some restaurants and cusines that she has found to be accomadating and allergy friendly: Romano’s Macaroni Grill, Olive Garden, California Pizza Kitchen and restaurants serving Mexican Food.
5) Cuisines highly likely to be unsafe: Indian, Thai, Chinese, Lebanese – nuts often form a hidden ingredient in many of their dishes.
6) Nut-free bakeries she highly recommends in the Michigan, US area: Bake AStation , Bake Station Too and The Pastry Palace
Explaining to the child:
1) She has taught her now 9 year how to always be careful when eating including ensuring that food crumbs from her neighbor’s lunch does not fall in her lunch tray at the lunch table.
2) She herself has stopped eating all nuts and has told her child that she is allergic to them too. So, the child feels that she is not alone in this struggle.
All the hard work is slowly paying off..7 years after the struggle began, this sweet little girl has outgrown her pistachio allergy and her cashew nut allergy has also come down significantly. Mom says with a wistful smile, ‘I dont want to ever re-introduce nuts to my daughter. It is not that important to eat nuts.I just want her to outgrow it so an accidental exposure will not harm her.’ She also wonders if her eating a lot of nuts during pregnancy contributed to it because there is no history of food allergies in the entire family.
In all this her objective has been to help her daughter be safe and not feel that she is different in any way. Guess who has helped her all through the way in ensuring that?! Her mom and the little girl’s grammy – of course 🙂