Our Journey

Just before I start, I just wanted to add that before my Little Bear arrived I never realised how much we judge ourselves and others as parents. Since having Little Bear I’ve had other parents judge me that I’m mollycoddling him or something to that affect and that’s why he’s like he is but it’s not like that at all. I experienced a lot of people thinking that if I just gave him the foods again and again he’d get past it, but it would’nt. I think we need to start listening and learning more especially as allergies are on the rise. Don’t get me wrong a child with allergies is still ‘normal’, they still play up, make you laugh, make you scream, can be ratty, can be hilarious and so on. However, having a child with allergies can place a huge amount of stress on a family and affects how the family may operate together and on a social level. Things you normally take for granted are hard, meal times, going away and parties just to name a few. I still remember the first invite Little Bear got to a party, my initial thought was ahhhhh how do I manage that? How do I stop him picking up food? How do I stop him coming in to contact with other children that may have eaten something he cant have?. I said no, I wasn’t ready for it but inside I wanted him to go and be ‘normal’. When I finally plucked up the courage to let him go to another partyhe had reactions, even following his own party he had reactions to something unknown.

Well, where do I start!! I am a Mum to two children. My daughter (sister Bear) who is now 12 years old and my son (Little Bear) who is 13 months. When we had our daughter things just happened.. By this I mean she fed, she slept, and she was a happy contented baby. In all honesty we were very lucky, and we thought it was all because we encouraged a regular routine. Boy, we were naïve!

Arrival of Baby Bear
When Little Bear arrived, chaos descended before I had even left hospital – I think he arrived as he meant to continue! The first feeling I had of ‘something wasn’t quite right’ became quickly apparent. Following the birth I needed a blood transfusions, at this point my Little Bear had been feeding non-stop. When I say non-stop, he had been solidly feeding for about 12 hours, ‘it’s normal ‘ ‘he’s bringing in your milk’ I was told. I remember thinking ‘oh’ this didn’t happen with my daughter, but all babies are different so I went with it. This continuous feeding went on for hours, days, weeks, and even months. He was feeding close to 20 hours per day, every day.
The first 3 months

Due to a difficult birth I was given extra visits by the midwives and the health visitor. Lots of comments and suggestions were made… ‘low supply’ or ‘your supply’s taking longer to come in’ possibly because of the blood loss I’d incurred, ‘he’s a hungry baby’ he was a chunk weighing in at over 10lbs at birth so any of these could have been plausible. However, something still wasn’t quite right! He was screaming or feeding constantly, seemed in pain, barely slept, had a ridiculous amount of dirty nappies a day (12-15), and he struggled to regain his birth weight.

One day a midwife suggested he may have a tongue tie. A tongue tie I thought, what is that? It wasn’t something I’d really heard or been aware of. After some research we were sent to a health visitor at our local children’s centre who confirmed Little Bear had a tongue tie. Now what we thought? In our local area, we could get a referral to the neighbouring NHS trust but the wait was long and things weren’t good. It wasn’t really something we could stand by and watch as we were all suffering. So we paid privately and had it snipped. We were told it could take a little while to settle things down as he would have to learn to get a good latch. After a week or so there had been some improvement but things still weren’t quite right. I contacted my Local Infant Feeding Team (who I should add have been brilliant) and they sent out someone to check his latch. His latch wasn’t that great and it took a lot of input from a lovely feeding specialist to improve things. We tried nipple shields, different positions, all sorts and eventually (with a lot of patience) he learnt to feed better.

However I still had a nagging feeling that something still wasn’t quite right. I started to question myself… ‘Why is this happening? What’s going on? Is it me? Is it my milk? Is he hungry?’ He still screamed and fed constantly and was the windiest baby I have ever known. One day when the health visitor was round she suggested it could be reflux. I’d never really thought about babies suffering with reflux, yes I knew babies were sick lots but my Little Bear wasn’t. I’d never even heard of silent reflux. The health visitor suggested a few alterations we could make, propping up his moses basket, various colic treatments such as infacol, colief and many others, keeping him upright (luckily we had invested in a sling before he was born), putting a hot water bottle in his moses basket before we laid him down. We had mixed success with these the best being the sling. He still loves going in to the sling now.

Still the nagging feeling was there, something didn’t seem right. People tried to ‘help’ ‘He’s a mummy’s boy’, ‘He’s hungry’, ‘He’s spoilt’, ‘He just wants to be held’. Deep down I didn’t agree that this was the case, there was something about his cry that said otherwise. I went to the doctors where I saw a lovely GP who diagnosed silent reflux. Luckily she had experience of her children having the condition, she prescribed Gaviscon. I felt sad. At this point little bear was only weeks old and I hated the fact that I had to drug him, it seemed wrong and a bit of me thought maybe he is just a wingey baby but I didn’t really believe it. My husband assured me it was the right thing to do as we had exhausted all other routes. So I did. We started the meds, no improvement. As he wasn’t a particularly sickie baby I don’t think Gaviscon worked that well for him as it was more a thickener to stop them throwing up. It was also a bugger to get it in him as you had to …….

I went back to the doctors, managed to see the same doctor and she referred us on to a paediatrician, by this time he was hardly gaining any weight was covered in a rash and was still feeding constantly having dozens of dirty nappies that were sour smelling, mucousy, green and would explode with some force out of the nappy and everywhere. At this point because he wasn’t gaining weight I was advised to give him formula top ups otherwise they would consider force feeding him. When we did this his symptoms magnified and I remembered thinking this is making him worse so I stopped. We had been doing some research and had started to look at the possibility that Little Bear had a cow’s milk protein allergy and before we met with the paediatrician I started to eliminate dairy from my diet. This started to help things, his nappies improved and he was a bit more settled. Finally we had the hospital appointment with the paediatrician who suspected CMPA too because of the rash and the symptoms. He prescribed ranitidine for silent reflux and and after a few days there was some improvement. He slept more, cried less and seemed a bit more content. These improvements were short lived and so we started a journey of upping the medication. With each increase we had a short term improvement and as he got used to the medication his symptoms returned finally we reached the max dose. Following further appointments at the hospital he was prescribed omeprazole because there was no significant improvement in his symptoms.

3 – 6 months
To begin with the omeprazole helped and by the time he was 4 months old he had levelled out a bit. We even managed a few days away. Which was a bit more successful than our first attempt where we came back early due to his screaming and his behaviour. We had short periods of relief but they were few and far between. He was still feeding an awful lot and was generally restless. He never really slept in the day, never had, and was still a poor sleeper at night. I can remember feeling that I didn’t know him. With my daughter I could recognise the cues e.g. hunger, tiredness, not feeling well, with Little Bear it was impossible to tell. And it was a viscous cycle, he was uncomfortable so he fed more which could make him more uncomfortable and less likely to sleep and the less he slept the worse he probably felt, but there was no way of interrupting the cycle.

At several points during his first year I remember feeling in some ways sad. I felt like I had missed out on him being a baby. I’d done what I could and had attended many baby groups but I was so exhausted and felt sick the whole time through tiredness that it became hard to enjoy him at times. At this point early weaning was suggested by the paediatrician. The health visitor didn’t agree. I could see both sides. When I’d weaned my daughter it just happened, as she grew and needed more food I gradually introduced a little bit of homemade fruit and veg, followed by meat, and so on. But because of what we’d been through and he had become relatively settled I didn’t want to change that. I held off for as long as possible (about 5 months) but at about this time he started to suffer with severe constipation. I then introduced some sweet potato which gave him diarrhoea and a rash, I tried other root vegetables and had mixed success and then tried a few fruits. The constipation then just carried on until at one point he went nearly three weeks without having a bowel movement and had a stomach the size of a melon! When he finally did go he spent days emptying himself, would then back up and the same cycle would repeat itself.

6 – 12 months
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.

12 months – 18 months

We are now at the point of weaning our 13 month old like a 6 month old….. Let’s hope we have finally cracked it. I will update you with how this goes

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