Why I set up the Recipe Resource. (The long version!!)

Inspired by Vicki's Guest Post for me, about her reasons for starting her Blog I realised I had never really given mine. So here they are - the long version...

The first few years of life are a time when most children gain weight and grow much more rapidly than they will later on, and the first year especially so. Having already had two babies with moderate reflux I expected our twins to suffer too, I felt I had “been there” and bought the proverbial T Shirt, even having two with reflux need not be too challenging, surely? How wrong can you be?!

Within hours of their birth I was changing cot sheets continuously. Once my milk came in they seemed unable to keep much down, and although their birth weights for twins had been good (A was 5lbs 12oz and K 6lbs 6oz) they started losing weight immediately. K lost over 10% of her birth weight and narrowly escaped readmission to hospital.

They uncurled - as newborns do, and grew longer, but by week three looked emaciated as they failed to fill out. They screamed constantly day and night, or so it seemed, in pain all the time from the stomach acid which came back constantly. A was stiff and rigid, unable to relax at all and exhibited fitting like symptoms which we later learned were “Sandifer’s Syndrome”, a complication of considerable, poorly managed reflux. 

The volume of milk which came back continually was phenomenal, poor K had to be changed many times a day, (as did I) so too did our bedding, their bedding and the carpets too were regularly covered in regurgitated milk. At 3 ½ weeks of age I took them to the GP to request Gaviscon for their reflux, and he took one look at them and sent us to our District Hospital’s Children’s Day Unit for assessment. 

They were jaundiced due to poor food intake. Blood tests were performed and as a result of their FTT their liver function was abnormal, thyroid function questionable, and with the constant vomiting they risked dehydration and electrolyte imbalance. 

(“Failure to Thrive” is when babies and children don't meet expected standards of growth. Although most of these children follow growth patterns that are variations of normal, others are considered to be "failure to thrive or have “faltering growth”.) 

The twins at 3 weeks old

We were fortunate that since there were two of them, I was breastfeeding and I had a good Health Visitor, I was allowed to take them home and return on a twice-weekly basis for monitoring.

We had severe reflux, Sandifer’s Syndrome, motility problems, reactions to food, swallowing difficulties and dangerous choking episodes, eczema, breathing problems and blue episodes, some IgE responses, developmental delays, Faltering Growth (FTT), night sweats, mouth ulcers, rashes, joint pains, hypermobility, poor temperature regulation, unhappy, screaming babies who never slept and a never ending round of feeding and clearing up.

We tried formula top-ups but A would not take any and K refluxed it all back even faster than my breastmilk. We tried thickened formula and then Nutramigen as a dairy intolerance was suspected. Reflux medication was introduced and by week 12 they were slightly more settled. I cut all dairy products from my diet and together with 2oz of Neocate (an elemental, hypoallergenic formula) twice a day they seemed much happier and Archie was much less sick.  I then cut out soya from my diet and this helped K a little. 

However their weights were still not great, and their FTT impacted on their development. The early months after birth are a crucial period of physical and mental development, after birth, a child's brain grows as much in the first year as it will grow during the rest of the child's life. Poor nutrition during this period can have permanent negative effects on a child's mental development. The twins smiled later than my elder two and seemed preoccupied with feeding all the time – even more than the average newborn! K’s physical development in particular was slow for a year or more, although she did catch up. Neither could cope with getting hungry,  I think it was incredibly stressful for them feeding then refluxing everything back. 

A’s weight started to climb slightly faster than K’s after the three months mark and he seemed to do much better, but she was still FTT and by 6 months of age weighed only 10lbs! After the introduction of solids at 6 months it became apparent that they were both intolerant to wheat as well as dairy and soya, and A had an egg allergy. Once their diet was better managed, they were eating solid food and on reflux medication, everything started to turn around. They still continued to suffer with their reflux, particularly in terms of pain, but their weight improved dramatically.

For a long time K’s height was been affected and she was tiny. The twins were incredibly clingy when little, apparently this is another expected side effect of FTT, babies who had FTT are more likely to be “insecurely attached to their mothers”. Now almost 8 their independence is definitely impacted by their gut disease. 

Sadly it didn’t end there. The “intolerances” turned out to be gut allergies, local non IgE reactions which cause gut inflammation and poor motility. We’ve been through tests, surgery, feeding tubes, and are still not out of the woods. We have a diagnosis of sorts - Eosinophilic Disease but the Hypermobility and other issues are also suggestive of Ehler’s Danlos Disease apparently, a connective tissue disorder which often goes with EGID. 

More than anything I wanted others to have some support, something to cling on to. Catering for children on exclusion diets is HUGELY stressful, even once you get your head around the practicalities. I regularly lose the plot STILL and have to return to basics. It’s tough, constantly, and if anything on this Blog helps just one person then I have achieved my aim. It’s been a long journey for us and we re probably barely half way, but if I can help anyone else via my Blog then I’ve achieved my aim.