Around this time I remember someone saying to me ‘they wouldn’t stand for it, if it were mine they’d be in bed and sleeping where they should be’ I was surprised, I had no choice in this behaviour, I didn’t know whether to laugh or cry. At this point I was literally up day and night with him. He wouldn’t get anywhere near settling until around midnight and wouldn’t stay asleep for more than about 1.5 hours at a time. He’d also only ever really settle between 3.30 and 5am, then we would start all over again.
By the time he was 6 months he was doing well developmentally and we took a break to Devon, it was such a hard holiday. He barely slept was quite unsettled and was still bunged up. At this point we questioned the work of the omeprazole whilst it helped his reflux the negative effects were worse and so we stopped it. The paediatrician tried to encourage us back on to it but there was no going back. They also tried filling him with lactulose and that just didn’t work. By the time he was around 8 months I’d tried numerous attempts at weaning and had to stop as the more solids that were introduced the worse his symptoms became. I’d tried one food at a time, just giving him little bits and it made no real difference. It was then decided that further investigations were warranted allergy blood tests and a barium swallow. The barium swallow confirmed reflux but showed no physical reason for the reflux, the blood tests showed allergies, in addition to the milk, to egg, wheat and tree nuts. Only 5 allergens were tested for in this test so other foods would be complete guess work. At this point I realised my diet would be changing significantly… how I love eggs I still miss them now!
Following these results we were sent to a dietician who was a specialist in children with allergies. Little Bear was diagnosed with multiple complex allergies and so the challenge of trying to find foods he could eat was on! Again we had several weaning attempts all which failed disastrously and ended up with a huge flare up of symptoms. I kept saying it’s when he puts solids in his mouth things go wrong. On breast milk alone he was better, symptoms were still there but more manageable, his sleep improved, wind decreased etc. Eventually he was referred to an allergy specialist from Great Ormond Street. In the meantime we were battling and digging deep.
Around this time I had made the decision to stop feeding him, I’d had enough as much as I wanted to be able to feed him I couldn’t take any more. Like I mentioned he was still feeding like a newborn, it was too much especially with another child and dogs in tow. Along the way we had tried a multitude of formulas. Although I was happy to continue breast feeding I’d also had enough. We hadn’t had much luck with the specialist formulas, he’d had bad reactions to most of them or he wouldn’t take the taste. The only formula he would take was soy formula I was convinced he would be ok, my dietician said he was reacting. No I thought, it’s not that, the more I gave him the more he suffered until it came to a head one night where he was screaming blue murder after tea and when we opened his nappy there was blood, it was in his stool and it was seeping out of him – horrible. I learnt the hard way and I guess sometimes the professionals do know best.
Our appointment with the allergy specialist was a bit of a break through, he diagnosed our little bear with a gut allergy. Not something I had heard of before but it basically means he has little holes in his intestines and when he takes in food, milk, or anything else it enters his blood stream and therefore is treated like a foreign object and so his body would fight it. For once things kinda made sense to us. Next he was put on to an antihistamine, but we had to move fast. He was now approaching his 1st birthday and was still fully breast fed and not eating solids. There were concerns over him missing developmental milestones that meant that he could potentially reject food. The antihistamine had some effect and improved his symptoms but not to the point that he could eat normally. They had put him on the max dose and so following a review they then moved him to a stronger antihistamine. We are kind of in uncharted waters here as antihistamines aren’t licensed for babies, particularly the latest one he is on. This helped.
At this time we were also trying to move him on to specialist formula because he was having such a poor diet, although I was still breast feeding him there were concerns that by the consultant that if I fell ill we’d be stuck. I was in some ways quite happy with this I was feeding an almost 1 year old like a newborn and it was having an impact. I was really run down and my body hurt constantly. At the last attempt we tried him on Neocate active. It made him ill he vomited and had an upset stomach for some time. It was that bad that he still will not take a bottle or cup with milk in it, even my breast milk. We tried to trick him with new cups, new milks, nope nothing, we were fighting a new battle food aversions. His last reaction had completely put him off food and we had a huge battle of keeping trying to get foods in him playing with food, truing purees and even to the point of having him suck the food out an Ella pouch just to get food in him, otherwise he would see the spoon and freak. At his last review they decided I had no choice but to continue with breast feeding him as he is too unstable, this was a bit disappointing I know I am doing him good but it’s really hard and means I have little time for my daughter. We’ve also found that as he picks up viruses these knock him off completely, although we have dodged a bullet with teething not affecting him too much.