For the first few weeks of Codys life he was a dream baby. Then things changed. By 3 weeks of age he was getting upset, and I mean distraught. He would scream in the evening for up to three or four hours. We were living in small flat in a big house in Hove with nine flats in the building. At first people used to knock on the door to see if I was okay (Dan worked away for a month when this all started which was sooooo hard), then they realised that there was a screamer in the building and that nothing would console him. Cody would wake up and be sick, very sick. He would then wake up an hour later and want more milk because he had nothing inside him. He was sick all day and all night. I was told that this was “normal”.
Time went on and I tried to introduce a bottle to see if that would help. He wouldn’t take one and I became bound to Cody day and night as a feeding, calming machine. I began to resent this situation because I had no time to rest at all as he was totally reliant on me. The sleep deprivation kicked in quickly and I was a walking zombie.
I talked to the health visitor who told me that Cody was just a sicky baby and it was normal. I knew that it wasn’t. I went to see my GP who prescribed infant Gaviscon. Try getting Gaviscon into a screaming babies mouth, it just does not work. Even when I was successful it did nothing to help him.
Month two and the GP gave me Ranitidine. This is used in adults to treat ulcers amongst other things……. I wasn’t happy about giving this to my newborn baby but it stopped him crying within days. What it didn’t do was stop him from being sick. I was so tired by this point that I had developed a slight stutter when talking as my brain couldn’t work quickly enough to talk. No one understood how hard this was and I think that some of my friends thought that I was just being dramatic and moaning about a little sleep deprivation.
Cody was so sick that he needed constant changes of clothes and so did I. One of my nephews now won’t hold babies for fear of sickness after Cody did the damage all over him several times.
The health visitor still said that he was just sick. The GP said that he would grow out of it. Months went by and I just got on with it because I didn’t know what else to do. Cody was losing a lot of weight and on a hospital visit for bronchiolitis the doctor said that if he lost anymore weight he would be classed as “failure to thrive”. What a thing to say to a mum, I felt like I was letting my child down badly. They didn’t offer any help and just would not listen to my concerns. I was struggling to bond with Cody. He was pale, had cold hands, was losing weight and I was so worried about him that I didn’t have time to enjoy him.
I pushed and pushed the medical professions and eventually at six months he was referred to the hospital because the GP came to the conclusion that being sick 10 times a day was NOT normal.
The appointment for an at risk child was a four month wait. I was on my knees with exhaustion, a weepy mess and couldn’t wait that long. I had started to wean at this point and this created even more “mess” with the sickness.
On one visit the GP rang the hospital and spoke to the on call registrar who suggested that Cody was prescribed Neocate Active which was a dairy free formula.
We cut all other dairy from his diet and within ten days he had totally stopped being sick.
He was a different child. I was a happy mum. The stress levels in the family had reached fever pitch but now we were cruising.
Cody had soya milk on his cereal but it was still too rough for his digestive system and the nutritionalist I finally saw at Brighton Kids hospital recommended Oatly milk. Family and friends suggested I gave him goats milk or rice milk but she said that this was by far the best milk nutritionally for Cody until he was two. He loves it. He calls it his special milk and it tastes really good.
Recently we have started to reintroduce dairy into Cody’s diet and I am happy to say that he can tolerate dairy in all his food and his latest discovery is lasagne packed full of cheese. The final thing to reintroduce with dairy intolerance is the drink of milk itself. We tried this last week and he came out in lumpy spots on his legs. We are going to wait a little longer.
The problem is that I felt guilty. I still feel guilty. Why hadn’t I thought of this myself? Why didn’t I try cutting dairy out of my diet when I was breastfeeding? Why hadn’t I been even more pushy with the GP than I was? Could I have helped Cody sooner?
I felt letdown by the health visitors and even my GP who was so lovely but her hands were tied by the huge referral times even with a case as extreme as Cody.
I had spent a fortune on cranio sacral osteopathy, massage, acupuncture for both Cody and myself because I wanted to help him and also needed help for my exhaustion induced anxiety. Some of these things did help calm Cody on the day he had them but interestingly enough not one alternative practitioner suggested a change in diet.
During this time Cody had constant ear infections which have continued ever since. Last Winter he had 13 burst eardrums in a cycle of every two weeks. He would scream for three or four days as the pressure built up behind his eardrum and then once it had burst he would have some respite and relief. When the eardrum healed it would begin again. One specialist in the ENT department offered us four months continuous antibiotics which I flatly refused….but that is another story. Cody had glue ear and has now got grommets in both ears. It is thought that the reflux has caused the glue ear due to the acid build up in his body. More guilt for me here about not getting it sorted sooner.
NICE have taken it upon themselves to introduce some new guidelines for mums going into their GP with a reflux baby. The guidance says that most babies will grow out of it on they own and for GP’s not to prescribe the more powerful drugs available but to leave that for paediatricians.
Professor Mark Baker, clinical practice director at NICE, said: “We think this guideline will discourage unnecessary referrals and treatment.
“There is over referral of babies with nothing wrong with them and probably over treatment in babies who do not require it.
A lot of this is about the relationship between the baby and the mother and the mother’s reaction to anything unpleasant or abnormal happening to the baby.” “This guideline will empower GPs to reassure mothers there is nothing is wrong and they will get better on their own.”
Prof Baker said the drugs used to treat problem reflux were powerful and should be used ‘with caution’.
In my opinion these new guidelines are patronising and insulting to mothers walking into a GP’s office. Of course mothers don’t like anything unpleasant happening to the baby but a good GP should be able to recognise the description from the mother about how sick the baby is or in the case of silent reflux how much discomfort the baby is in.
Sam was born and this time round I knew within a few days that he was in major discomfort. He could not lie on his back without screaming and screaming, he arched his back and then would projectile vomit whilst lying down. The only way that he would sleep was on his side whilst next to my breast for comfort or upright with his head over my shoulder.
I was so stressed out that history was repeating itself that I called an expert on Reflux, Alison Scott-Wright. I had bought her book The Sensational Baby Sleep Plan after it was recommended to me by several friends. I used Gina Ford the first time round and cried my way through it (as did Jack), the Baby whisperer with Cody (useless as the shush shushing could not be heard above his screeching) and liked Alison’s approach. Sam is sleeping brilliantly now but he wasn’t then despite following all her guidance. What stuck out to me whilst reading the sleep plan was her brilliant chapter on reflux. Alison is an trained nurse and also has looked after children for 20 years in many different capacities, it was like she knew me and what I had been through with Cody through her writing. She recognises mothers struggles to get help with reflux and aims to give them all her expertise in the book. I rang her straight away as she offers telephone consultations. My friends laughed that I was calling someone to get this help with my baby sleeping but after they heard what she had told me they immediately backed down.
Alison is concise and straight to the point. She often works live in with new babies to help parents with sleeping issues and when I rang she was pushing a baby a couple of weeks older than Sam who had been suffering from exactly the same problems. She confirmed my suspicion that Sam had reflux and gave me some invaluable tips such as which dummy to use for him based on how he was feeding at the time (he needed a dummy because due to his pain he was constantly looking to the breast for comfort but it was simply adding to his pain), the best bottles for Sam (again they worked perfectly and have the added bonus of being able to sterilise individually in the microwave without giant steriliser on the kitchen side – genius) and also she pointed out that Sam was never going to sleep well until I allowed him to sleep on his side or even his front. I immediately purchased all that she recommended and a baby sleep monitor which checked his breathing so that if he rolled onto his front from his side he would be okay.
The results were amazing. Sam has recovered very quickly. He is my calmest baby to date and goes to sleep without crying ever. I have never left him to cry for more than five minutes and as soon as it escalates to a high level I go in to calm him, it rarely does though and he chats himself to sleep happily. I have now introduced Sam onto Hipp Organic formula which he can tolerate at 4 and a half months. I think that he needed this break from dairy at an early age and it prevented him from building up a major intolerance to cows milk protein (so often mixed up with lactose intolerance).
Alison said “Distressingly, so many parents instinctively know something is not quite as it should be with their baby and many of them come to me with desperate stories, searching for help. On average, these parents have been to the GP 3 times or more, have asked their Health Visitor for help several times, even seen a paediatrician and/or a dietician and even been to an A & E department. Also many have paid privately for, cranial osteopathy, breast feeding counsellors, herbalists, baby massage/yoga, maternity nurses and other sleep consultants – all to avail.
Too many health professionals simply aren’t educated, aren’t aware, fully understand or take seriously Acid reflux and dietary related intolerances as medical conditions. It is already often dismissed out of hand, with comments like “all babies reflux, they will grow out if it” “babies cry, it’s what they do” “what do you expect? Babies don’t sleep until they are 12 months” “it’s a laundry issue, get washing!” “I think you are suffering PND, have some tablets” etc etc and sadly I think these draft guidelines will encourage and further validate this thought process.”
I am able to sit writing this today with three happy and healthy children. One baby who occasionally wakes for no more than 5/10 minutes in the night for a drink of water. The other two sleep through the night every night and can eat nearly everything (when they aren’t being fussy). I feel in control and educated about reflux and am able to help manage any problems that may arise with Sam in the future (reflux can occasionally rear its ugly head later on). I’m going to ditch the guilt and feel reassured from Alison’s words that I was not alone in my conquest for help and having the doors closed in my face.
I would highly recommend anyone who suspects their baby has reflux to read Alison’s book, she has far more direct experience than any professional I have seen in the last two years. When I took Sam to the doctors to say how often he was being sick the GP started a Google search on “babies being sick”….. need I say more.