Food Allergy Parent Interview
Gina is a mum of one feisty almost three year old son and a gorgeous three month old daughter. She is also a part time acoustic engineer, and owns and runs a handmade Etsy business called Picapocket, making modern lightweight picnic blankets. In our crazy modern world simple peaceful moments can be found by making time for the outdoors, whatever your taste: mountain tops, beaches, outdoor concerts or simply the local park. Take a picnic blanket – Gina’s blankets pack down as small as a paperback book, waterproof and machine washable means they provide a dry seat whatever the weather. Some of the current kid food allergy research is pointing to dirt being good for reducing or avoiding allergy in children, so take them outside! You can find Gina’s Etsy store here.
Can you tell us what food allergies your son has? Is there a family history?
My little two year old son has egg and peanut allergies.
My sister also has egg and peanut allergies and my brother has gluten intolerance.
When and how did you find out about your son’s allergies/intolerances?
We have known about them since he was 5 months old when I fed him eggs, then we noticed that even if we had been touching eggs then touched him he came up in hives, one day he came up in hives when we hadn’t had eggs but had been eating peanut butter. He ate peanuts by accident when he was 18 months old which resulted in a lot of vomiting, but the worst was when we were doing a food challenge at the children’s hospital as part of the current clinical trial for peanut allergy. During the food challenge he had an anaphylaxis reaction which meant that his breathing became difficult and started coughing, over a few minutes the coughing became every breath. One EpiPen adrenaline dose did nothing so a second dose needed to be used.
What would you like other parents to know about your child’s food allergies and intolerances?
My son is almost three, so far his environment is very controlled and every other parent who has been in a situation to feed him has been very very good about the allergies. I guess I would like other parents to be aware that the potential for kids to have allergies and to always ask before offering kids food if you don’t know them just in case.
What are your family’s food handling practices? Do you keep allergens in the house?
Yes we do have peanuts and peanut butter in the house. They are kept in a cupboard he cannot reach and we are careful to put any utensils or plates that have touched peanuts straight into the dishwasher so they do not get reused or handled by my son inadvertently. Perhaps in the future we will need to rethink our practices, but at the moment it is not an issue. The egg allergy is a much milder allergy so we are less concerned about egg handling practices.
How do you manage going out in ‘the world’ eg. birthday parties, daycare/school, people’s homes?
We have yet to do much of this where it is a problem, people are very cautious around very young toddlers. I am anticipating this becoming a bigger problem as Josh gets bigger. Communication will obviously become very important.
Where have you found most of your support and information? Can you recommend any good websites or resources?
I would recommend the book “Kids food allergies for dummies” my MCH Nurse had been to a talk by one of the authors so recommended it to me. I then was fortunate enough for my son to be under the care of the other author of this book. It is an informative and reassuring read, with individual write ups on each of the common food allergies which I found really good. My son’s egg allergy is something he is highly likely to grow out of, as kids often do, and he is showing every sign of doing so. The peanut allergy is far less likely to simply grow out of unfortunately.
What do you wish someone had told you as soon as your child was diagnosed? Would you have done anything differently knowing what you know now?
I wish someone had told me that if my son eats peanuts (before he had had any and was diagnosed as possibly allergic via skin prick test and hives upon touch) I should take him to emergency department/doctors clinic as a precaution the first time rather than watching and waiting at home.
What can you tell us about the peanut trial your son is participating in?
My son is currently participating in a clinical trial for a peanut allergy cure at the Murdoch Children’s Institute here in Melbourne. The trial involves a probiotic and peanut being taken daily for 18 months and then testing to see if the treatment has been effective for an extended period after the treatment. Of course being a clinical trial means that there is also a possibility of my son being on a placebo for either or both the peanut or probiotic.
The clinical trial started with clinically proving his peanut allergy, literally feeding him peanuts. My son is so young that he was unaware and simply bored with the experience, until he felt itchy and uncomfortable, and then emptied the contents of his belly all over the hospital bed. I had seen this before so was resigned and not overly upset. My son was not overly fazed by this either “look mummy! Yucky!” we then got bored for another 40 minutes before the anaphylaxis set in – this was something I had not seen before and had not expected to happen, the first dose of EpiPen did nothing and it took a second epi pen dose to bring his breathing back to normal. It was very scary to watch my son go from well to unable to breath within a few minutes (15 minutes give or take) and I am very grateful that we were in such a controlled situation when that happened.
A couple of months (and the birth of my daughter) later we started the trial treatment. For the first dose and every time we step up the dose we go into hospital and spend time watching and observing my son’s vital signs to make sure he can tolerate the level of peanut he is on, then we are sent home where I give him is peanut and probiotic every morning. They are building up to a dose of the equivalent of a handful of peanuts which he will take daily for the rest of the 18 months. The staff on the trial are all allergy experts and have been worth the effort of the trial to ask them every question possible on anaphylaxis, allergy, asthma and eczema that crosses my mind! He has had a vomiting reaction at home once which was extremely scary for me if not him: “look mummy, yuck!” The trial has a help line to call to discuss such events and the nurse on call was extremely reassuring and talked me through how to manage it, what to look out for and when to come into hospital.
I would prefer my son not to have an anaphylactic allergy; I have watched my sister cope with this throughout her life, answered midnight phone calls when we were in our 20s and driven her to the emergency department. While the trial is a lot of effort and we might be on the placebo, I am willing to put the effort in to assist the possibility of treating his allergy – or in the future being able to treat his allergy. I don’t want him to need to be so careful in his life or to make as many trips to emergency as my sister has done.
This article has further information about the trial if you are interested.