Can you tell me how old your child is and what intolerance or allergy they have?
Donnchadh is almost 22 months and he has multiple allergies at present. He has CMPA, Wheat and Soya allergies and severe sensitivity to acidic foods ( lots of fruit and vegetables e.g. tomatoes) which drive his mostly controlled reflux crazy and it becomes not so silent.
How did you first find out your son has allergies?
Donnchadh had a very difficult start, he was constantly upset and in pain from the outset. We
are lucky to have a supportive GP who reassured us during what would turn out to be a long road to a relatively settled life. We changed food numerous times in the early days – mammy milk to formula to prescription milks to finally settling on Neocate at four months. This was combined with a lengthy reflux medication trial ending on a high dose of Losec which gave a more settled day for my little boy. He also had tongue tie correction at 10 weeks.
Manageable discomfort and normality began at four months for our family. We were referred to numerous paediatricians in varying fields to be told that as our son was gaining weight things would settle at 6 weeks .. Three months .. Bad colic …6 months .. When he was sitting … When solids would start … When he’d pass wind solo (still waiting on this one as he still experiences chronic wind pain) … When he’d turn one … When his gut would mature fully. We waited patiently at all advice to begin then became frustrated and deflated after each consultant would make general statements like “give him a yoghurt and see what reactions he has”, “it’s behavioural” and “he’ll be a difficult teenager”, “do you have other kids?“, “record the hours of crying in minutes for a month and then we’d make changes”, “how was I coping?” The list was endless.
Fast forward to March 2015 and a wave of relief and although our struggle continued we felt supported and listened to when we met a doctor in the Tallaght Allergy Clinic where his needs were identified and a thorough plan put in place to meet those needs.
As your son has reflux as well as allergies, did it cause complications in getting a diagnosis? They can have similar symptoms so did it take longer to diagnose?
Absolutely we were told that the symptoms he constantly experienced were just a result of the silent reflux /colic and by six months all would be fine. My GP always listened to my concerns and acted accordingly. Our PHN was a great support also and referred us onto a dietician at almost a year and she was an invaluable source of support and liaised with GP and accelerated the supports we accessed. The red tape regarding who can make referrals was so frustrating and all of our supports repeatedly said how different our experience of paediatric care would have been, had Donnchadh failed to gain weight ( thank god that wasn’t a worry but that’s double-sided as it prolonged his suffering and development.
At what age was your son when the allergy was first diagnosed?
It was suspected by my GP as an intolerance / sensitivity by 10 weeks and Dietician at first appointment at 11 months but the formal diagnosis from an immunologist didn’t happen till 13 months.
The process of getting your son a diagnosis seems to have been incredibly long and difficult..
Yes, it was extremely frustrating and soul-destroying at times watching my baby in chronic pain and discomfort and knowing something more was at play but falling on deaf ears by some of our health system’s leading professionals. At 8 months our paed team instructed the withdrawal of solids and exclusive formula diet which caused great upset and distress and then 10 weeks on a new doctor on appointment rotation then instructed to restart eating everything and he’ll be fine , babies cry. Understandably Donnchadh had a food aversion and problems with texture as a result.
How is he doing since the diagnosis?
He has come a long way since this time last year. He is tolerating more foods and has a somewhat balanced yet very restricted diet. He is now managing oats , non acidic fruit , two proteins and some grains.
How did you manage childcare for Donnchadh?
My husband was originally due to take parental leave to care for Donnchadh but two days before return to work after summer holidays was due he got a job 15 mins from home opposed to the 70 min commute he had been undertaking so he took this option. We were childcare-less and isolated from family so we had a frantic trial and error childminder scenario which a few weeks and worked out fantastic when we hired a lovely caring lady who understood that his pain was great and that he needed cuddles and patience. I’m currently on parental leave to try regain that special mammy-baby time that I feel uncontrolled reflux and allergies robbed us of almost two years ago now.
What did you find most difficult about putting them on a free from diet?
We tried to do separate diets initially but after a couple of situations when Donnchadh ate some of his sister’s food we decided to all go gluten / wheat free and dairy free for meals. I found buying the free from products a minefield to start as he has multiple allergies. The ingredients in products generally shocked me so we are slowly adopting a more unprocessed natural diet which is time consuming to begin and meals are less convenient but we have full control of what we are eating and limit reactions as a result and instead of having a baby cry in pain because of food we have a toddler who cries when he climbs and falls as life should be! I find Deliciously Ella by Ella Woodward a great resource in terms of recipes and add meat to the recipes as it’s Vegan whole foods based.
Have you a favourite free from product?
He absolutely loves the free from Mayo and Mrs. Crimbles Plain Macaroons are our treat hero here .
Is there one product you wish you could find for your child what would it be?
More convenience foods on the go or to know I can buy him something easily if I go into a coffee shop. At the moment I can’t so we just avoid or I bring his own supplies which is usually met disapprovingly. Do you find your family and friends understanding?
We initially found family and friends had limited understanding and knowledge of what his diet and allergies entailed but to be fair so did we at the start of our journey. Over time they grew to understand and question and be proactive in our quest to keep our little boy happy and healthy. The now three year old is so used to the routine and protective of her brother that she will question family “Em, is that dairy free ? He can’t eat them … Mammy / Daddy can he eat these ? ” . Family now try to have dairy / soya / wheat free food when we visit . Friends are more difficult as they didn’t necessarily see our struggle as our life was isolating for quite a while so understanding has been slower and we travel always prepared with the exception of one friend who is dairy free and thoughtful so can rely on her support .
How do you find eating out with a child with allergies?
We seriously limit it and when we have done so it’s been a stressful ordeal so to be honest we tend to rotate taking our daughter out for coffee shop / lunch dates. We go to a local berry farm for a family treat that we can enjoy and relax .
Thank you so much Sarah for taking the time to do this interview for dairy free kids. I can see it has been a huge struggle to get a diagnosis for Donnchadh and I’m so happy that things are more straightforward now in that at least you know categorically what to avoid and that he is getting proper advice and help. It is heart-breaking to hear about how long he was in pain and your questions falling on deaf ears. I too have been asked in a similar situation about how I was coping and if I had PND, it seems to be a common response when you have a young baby and they are crying a lot. I have spoken to many people with similar experiences. It is so disappointing and at times infuriating that it can stop an illness in our children from being taken seriously.
It is very interesting what you say about how the whole family are now eating healthier as a result of reading labels. I found the same thing when I started to read labels, a lot of our regular foods were extremely processed, it can be a wake up call! Thanks again and best of luck with everything with little Donnchadh.
If you would like to take part in this interview series of real life allergy stories on dairy free kids, please drop me a line laura @ dairyfreekids.ie
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