Other than a little jaundice at birth which forced us onto bottle feeding, there was nothing to suggest Freddie would develop food allergies. Time passed and this average child hit milestones and we started to wean at 6 months. I made loads of my own purée, being proud to be 'one of those mums'. Then motherhood got on top of me and I gave in to the food pouches.
Within a week, Freddie seemed to become a fussy eater, rejecting some pouches but not others. There was no history of food allergies in either of our families and it just didn't cross our minds to even be a possibility. He developed constipation and a rash which we were later told was "normal baby eczema" or "teething" but seemed to flare for no reason and on several occasions the rash didn't seem to fade.
We were phoning 111 or the doctor's almost every week. Something was wrong with our child and no one would tell us what it was. Unfortunately, I was then unexpectedly hospitalised for three week and when I was released, his symptoms were hardly visible thanks to home cooking efforts of my parents and in laws. But they soon developed again.
One day, when Freddie was almost 9 months old, we hit on an idea. While trying to feed Freddie another one of the pouches (blueberry, apple and baby rice), I spilled a little on my hand. In an instant I had a rash which looked very similar to Freddie.
We were shocked. Could it be food? And why was I reacting? I don't have any food allergies! We went back to the doctor's but they wouldn't refer us to an allergy clinic. Instead they suggested we keep a food diary.
Very quickly it became apparent that rice was the problem. Rice cakes caused swelling and hives around his mouth, pouches containing baby rice made him develop a rash all over but the identical one without baby rice was fine.
We went back to the doctor's and asked for a referral but were told it was baby eczema and of course it wasn't rice. Keep the diary going.
Then Freddie turned one. On his first birthday, we started giving him cow's milk. Instantly his symptoms deteriorated. He had constipation, random sickness, constant rashes.... In a panic I put him straight back onto the formula.... Here's where I own up to my worst mummy fail. I put him back on formula. Normal formula. Which contains milk. Worst still, it took me a week to realise what I'd done and only the gentle honesty of a very good friend who suggested that I check what was in the formula to kick my brain into gear.
Finally though, the doctor's were listening. Milk is a top 14 allergen, people know about it, more than rice anyway. Within two weeks we had an allergy appointment booked in.
The problem was it took over 6 months for that appointment to come through. And then it was a cancellation appointment the night before so we were utterly unprepared. By this time, Freddie was 1 year 6 months old. He had blood tests and a dietician referral and things were looking up.
But the blood tests came back negative. Negative for rice, negative for milk. And the dietician said to us "the rice is unlikely so we'll ignore it and just focus on the milk". And then I lost my faith in the allergy clinic.
We came home disappointed and month after month new things kept cropping up. We did our best to avoid rice and milk just in case but it was hard to get those around us to do the same when we had "no backing" from the allergy clinic except for Cetirizine as a "back up".
Freddie kept getting worse. He would have apparently random reactions to all kinds of food. We were in and out of a and e. The receptionist at our doctors knew my voice on the phone. Things he was previously okay with caused horrible hives. Chicken quickly became another "avoid" on our list. He even had a near anaphylactic reaction to three Twiglets as he struggled to breathe and I had to give him four doses of Cetirizine (we had no Epi-Pens and were on a train!)
We paid for private allergy testing but it didn't help. In the meantime we were still in the cycle of doctors, out of hours, 111 and A&E.
During one particularly memorable doctors appointment, my dad was waiting with us in the waiting area and I hadn't slept all night when Freddie spectacularly vomited everywhere. I broke down in hysterics crying "see? There is something wrong with my baby. I am not crazy!" (Which FYI is probably the most crazy thing you can yell in a crowded room.) But we got another referral "just in case".
Almost exactly a year after our first referral we got our second appointment. This one was better. Amazing actually. We had hardly started speaking when the allergy nurse came into the room and said "allergy action plan then". We were prepared for this appointment and had photos, videos and food diaries. But we didn't need them, the allergy nurse was amazing. They took more blood and it still came back negative but we were told that sometimes it didn't show up. We were told to measure the reactions and not just rely on the blood tests. If we see it, its happening. We had more Cetirizine, Epi-Pens and that all important allergy action plan.
And now we're here. Freddie's 3 years old.
Strong flavours can trigger his reactions (hence the Twiglets), and it turns out he is sensitive to an ingredient in both Movicol and Lactulose (both laxatives for constipation generally prescribed to children) which caused hives and sickness for him.
Freddie undertook a "rice challenge" a few months ago and "passed" with a brown rice rice cake but since then we still have random rice reactions. He ate at a restaurant with rice flour used in the kitchen and we had to give four doses of Cetirizine. I was a step away from using the Epi-Pen.
Our allergy nurse is incredible and she is looking into why this could be. Rice alone is so uncommon and Freddie is a bit of a test run for them it seems. Sometimes he reacts to rice flour, sometimes only rice flour with rice syrup. In his last blood tests, milk showed up as an IGE allergy so we are still avoiding that too. I'm waiting for rice to show up next time. And we are constantly on the edge of what is and isn't safe.
He is currently potentially anaphylactic to rice, milk and chicken. He is intolerant to strawberries, oranges and bananas (especially together as I discovered when I made a fruit salad and he was so very sick). Sometimes he can eat something and have a huge facial reaction, swelling and hives but seem completely unbothered by it and sometimes he screams blue murder with one hive. His green allergy backpack with his medication goes everywhere. Our allergy nurse told us that he's the strangest case she's ever seen but being taken seriously is the best thing right now.
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