Allergy Mums / Support for families with allergies

publication date: Feb 12, 2014

Our Reflux Journey

 Me and Molly

When Molly was six months old she was on inhalers to try and control a chronic cough. Then came anti- histamines for hay fever to help control post nasal drip...little did we know that it would take another seven years before we had all the information we needed to get out little girl healthy....

It’s exhausting being a new parent – everyone knows that. But when your child is ill it’s even more so. Our journey with Molly (and our bid to get her well enough to sleep through the night and live pain free) was more complicated than we could have imagined.   I suffer from lots of allergies; my childhood memories are filled with mental pictures of taking my own food everywhere, eating grey homemade soya ice cream, skin prick tests and endless allergy shots.  My mother had to teach herself how to cook milk, egg and gluten free. There was so little help available for mothers of allergic children 45 years ago.

When Molly was born I was prepared for allergies. The diagnosis of asthma was a bit of a surprise, but not huge, as my eldest niece is asthmatic and I get an ‘allergic cough’ at times.  So we had to pin her down to get the mask on to her little face while we used two ‘puffers’, twice a day, to help the breathing. We used to lie in bed listening to her breath. No...We didn’t share a room with her. We could hear her wheezing and coughing through the walls.  Nobody slept. My husband would take her out in a pram from 3 am till 5 am every night, so I could get a couple of hours sleep. Molly would fall asleep sitting up, but not lying down.

Since I’ve so many allergies, I initially weaned her on safe foods – ones I’m not allergic to. The first time I tried her with a bit of cheese she vomited everywhere. All further attempts at dairy resulted in vomiting, so we took that off the list.  At the time we thought egg was okay and she happily downed scrambled eggs and omelettes. Wheat, too, seemed fine.  I was delighted, but concerned that she still struggled to breathe, despite increased amounts of steroids.

The main issue with Molly seemed to be her asthma, which plagued her, particularly at night. We were exhausted. She was exhausted, but we carried on with the drugs and hoped that it would improve with time.  She was always sick after attending birthday parties; even though we made sure she had no dairy products. It was a while before we connected the dots....

At nursery she had a special plate, the nursery were great about her food and made sure she had a well balanced diet and provided copies of all the recipes, so I could check what was in them. Everything she ate at home was ‘home made’. I never wanted her to eat jarred baby food, not a fan of prepared food, so I knew every ingredient of every meal.  I’m against young children having sweets and crisps, so these weren’t part of her diet. Plenty of time to live off junk as a teenager is my view. Avoid this stuff when they are little, so they don’t develop the taste for it. Still...she was ill.

Then she started school; and suddenly her weight started to plummet. Chronic pain, vomiting every night, she would curl up at night in bed hugging a bowl.  The combination of vomiting and asthma was terrifying. Every night we watched as she was sick, every day she was regurgitating food.

The GP tested for hypoli, an infection in the gut. It was negative. Then the GP suggested it was school anxiety, as Molly is a summer baby. We dismissed this, as she enjoyed school so much, and fortunately the school supported us and offered to write a letter to discount school anxiety as a cause.   After months of discussions we were finally sent off to Chelsea and Westminster Gastro Clinic. Molly was admitted for a gastro...., she was given a general aesthetic and a tube was put down her throat and through her nose to measure acid production. Her last strangled call of ‘Mummy’ as the aesthetic took effect will haunt me forever. When she woke she needed an x-ray to check that the tube was in place. Julian carried her into the x-ray room with me trailing behind trying not to cry.  The tube was where it needed to be. All was going to plan. 

For the next two days we stayed at Chelsea and Westminster. She was hooked up to a computer that measured the acid in her stomach. Every time she ate we had to push a button, every time she drank...we pushed a button, sitting down, standing up? We pushed a button.  Sadly it turns out that Molly doesn’t react well to anaesthetic, so we watched in horror as she vomited with a nose and throat tube inserted. The concern was that the vomiting would move the tube and render the procedure ineffective. Intravenous anti nausea drugs were introduced and the vomiting stopped. Lucky the tube was still in place.

Only one parent is allowed to stay the night so I camped out beside her. It was hard on Julian to leave...he wanted to stay as well...but I couldn’t have coped with leaving, so he had the lonely night at home, while I had the easier job of watching our daughter sleep.

After two days in hospital the tubes were taken out, and we were told reflux was confirmed.  Now we had a new challenge. Drugs and diet were the way to stop the vomiting. But the reflux diet is hard. Low fat, low sugar, no spices, no juice, no fizzy drink, no sweets, no fried foods, tomatoes are a trigger, limited cakes and cookies.  We realised that at school her sugar consumption had rocketed. Sweets were given out at birthdays (non dairy so Molly could have them); also sweets were a reward from ‘the kindness box’. So now we understood why the symptoms had got so bad after joining school...she’d been on a pretty low sugar diet until then. Fruit and homemade baked goods had been in her diet; but not sweets. It also explained why she vomited at birthday parties.

Learning to eat to avoid the acid coming back up Molly’s throat has been a challenge.  Explaining the ‘no sweets’ rule wasn’t easy. And I still get strangers commenting when they overhear me saying ‘no...That has too much sugar’ – I don’t know why people think it’s alright to tut at me and mutter about her weight. Molly is very slim; letting her eat sugary food will result in vomiting and losing more weight – not gaining it.  I really don’t feel like explaining that in the middle of the grocery store or coffee shop. The press is full, rightly, of stories about how difficult it is to lose weight. But I can tell you it’s very difficult to gain weight on a low fat, low sugar diet.

She had the procedure at 6...by 7 the vomiting stopped. By 7 ¼ she slept through the night for the first time. We didn’t. We kept running into her room in a panic as we couldn’t hear her breathe.  Turns out most of the coughing was reflux induced; once the acid was under control, so was the asthma. I hate to think of the number of times we woke her up by mistake because we were checking that she was breathing. 

Things were looking up, her weight stabilised...and then she started gaining weight and a bit of height too. The coughing stopped with the Omeprazole and Ranitidine and we slowly took her off the inhalers. We introduced a new, strict diet for us all. The whole family eats for reflux now.  Molly is excluded so often because of reflux and allergies – home had to be the place where she can eat what everyone is having.  Home is the safe haven. My aim was to wean her off the drugs too.

But she was still not completely well...improved... but not well. That’s when one of the consultants suggested that Molly suffered from delayed allergic reactions...and that she needed to go on an exclusion diet to identify the triggers.

That’s a whole other article!


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