33 things seasoned allergy families want new allergy families to know
I bombarded more of my allergy networks to get a feel for what advice they would give to people just starting out on an allergy journey…and the responses came thick and fast! I’ve tried to condense it all into one post…so here goes!
*know that a negative skin prick test does not mean that the food is necessarily OK. If you need to, read up about non-IgE mediated food allergy.
*know the risk factors if one or both parents have allergy in order to be prepared when the child arrives. From my perspective, having a good knowledge of early symptoms such as eczema all over the face and understanding the difference between this and hormonal rash in new-borns was important as my younger two children had symptoms from only a few days old.
*ring emergency if you are unsure if an ambulance is needed.
*consider taking out an ambulance membership to reduce the cost of frequent hospital trips.
*In my and many other cases, going privately is a much better option, even if the cost seems horrendous. For me personally, I can’t put a price on feeling ‘understood’. It also means more comprehensive allergy testing, faster prescriptions, better followups and someone to email whenever I need advice.
*do some research on how cross-contamination happens with regards to food allergy, this is a real problem for many with food allergy. Also, be prepared to stick to your guns when someone offers to take the offending food out of a dish and expect it to be fit for consumption.
*include the allergic children at all costs and expect others to do the same. Anything less is unacceptable. This doesn’t necessarily mean going to the end of the earth to re-create everything to make it suitable.
*be ready to explain how contact allergy and cross contamination issues work as many people don’t understand this to be a problem.
*Understand that allergens can be masked in packaged food in ways that are not obvious, it pays to read up about labelling. For example, milk is often called milk solids, milk protein, whey protein, casein.
* Know that it will get easier! It can feel overwhelming at first, but you will get used to reading labels, talking with people, and advocating for your children!
*It’s a good idea to acquaint yourself with labelling laws in your country…in NZ and Australia many manufacturers put allergens in bold, but it is not compulsory to do so which leads to much confusion. It’s always best to contact the manufacturer directly if you are not sure.
*trust your gut instinct and fight for your case. Believe in yourself and know you are doing the best for your children.
*if you have been told or need to avoid traces of an allergen, most likely the safest bet is to choose items that contain a traces warning which obviously doesn’t list the ones you need to avoid.
*some people have said they wished somebody who had experienced an anaphylactic reaction had taken time to explain exactly what it feels like..in particular the anxiety of it, in order to be prepared for the seriousness of it when it does happen…in particular the feeling of having taken your last breath.
*Another popular suggestion is to carry two epinephrine auto injectors at all times.*If you haven’t been given an action plain to fill out, ask your GP for one or find one online.
*Know that nothing really can predict the severity of a future reaction…including past reactions and allergy testing. Allergy testing may predict the likelihood of an allergic reaction occurring but not the severity.
*Take every day, situation or food allergy diagnosis one step at a time. It really can be very overwhelming and feel like too much to take in…but you will get there. I know at the start of my eczema (but not food allergy…we’d been dealing with that for a long time! journey with my middle child, I felt bombarded by the “only natural” camp and the “purely scientific, has to be proven by science and only steroids will work” camp, and I really had no idea where I sat on the issue.
*consider taking probiotics during the last trimester of pregnancy and onwards.
*please, please read up about the symptoms of anaphylaxis. It is not just an inability to breathe and things can spiral downwards very very quickly.
*consider asking your specialist to be careful what they say in front of your children. Some have said that telling them they will grow out of their allergies by a certain age has meant a lot of disappointment for the child.
*find key avenues of support. The one suggestion that came up the most was Facebook support groups specifically for food allergy. These come in all different shapes and sizes so find one that fits you best. Some are for specific allergens such as milk, egg or nuts, some are for treating allergies naturally and some are specifically for breastfeeding babies with allergies. Some are recipe based and some are advice based so it may pay to join a few different ones.
*if you come from a health background, don’t assume you have it all worked out! Some health professionals told me they knew a lot about health in general and eating healthy, but this didn’t help much when it came to navigating systems and getting appropriate health care for allergies and associated symptoms.
*be scared to call an ambulance even if told to administer antihistamine by a health service, particularly if you are seeing symptoms such as hives, swelling, wheezing, coughing.
*that when breastfeeding, reflux can be linked to foods passing through milk. While this is definitely not the case for everyone, it is pretty common and often discounted by some doctors. It pays to know the common triggers and trial excluding them to see if it makes a difference.
*lots of people will want to help by dishing out advice, but what works for one person often doesn’t for another.
BE PREPARED FOR:
*people not taking you seriously when you can’t eat certain foods or use particular skin products, even reputable companies and health professionals (read GP, yep that would be your first port of call…but no, often not overly helpful or knowledgeable when it comes to allergies!)
*be prepared to do most of your own research to figure out what is wrong with your baby and then how to treat them.
*not all family and close friends to be completely supportive! Some people sit in the “it’s all in your head/it’s quackery” camp.
*skin advice for eczema children is varied, but some of the things that came up frequently were:
-not to bathe your baby too often and avoid baby soaps and shampoos. Water is fine and when my eczema baby got older and needed more of a wash, I just started using her emulsifying cream as a soap substitute. She is 3 now and I still do and it makes the world of difference for her. I also cut out washing powders and switched to soap nuts.
-Beware of that free pack of baby bath products & samples your midwife gives you!!
BE AWARE OF:
*that in most countries, companies don’t have to label for shared lines. So, essentially, even if you are spending all the time in the world reading labels, it’s no guarantee it will keep you or your children 100% safe 🙁
*If you are dealing with nut allergy, beware of nut oils in all sorts of products! Think lotions, sunscreens, lip balm…..
*pink and red peppercorns, especially in conjunction with a cashew allergy (yep..I didn’t know that one either!)
*in good news…there are lots of things to eat that are allergy friendly, you just need to find them!