I knew breastfeeding could be challenging but I never quite imagined how challenging it would be for me.
My very first experience was actually a breeze. After Elise was born, she was put on me and she wriggled right up to my breast and latched on with a bit of assistance from my midwife. She was so little and squishy and seeing her feed for the first time made me heart melt. My wee baby seemed just perfect.
Getting Elise to latch in those first few days was sometimes difficult, but I was lucky enough to be only one of two people in the maternity unit. It meant I basically had one on one attention from the midwives which was a bit of a luxury. By the time I left hospital with my beautiful wee girl, my milk had come in and I was confident that I could breastfeed with no trouble. I almost felt a bit smug that it had gone so well.
Well those thoughts didn’t take long to disappear. Breastfeeding sometimes hurt. I got cracked nipples, but that wasn’t the worst as they didn’t take long to heal up (I used lanolin nipple cream and it’s is amazing stuff!). The problem was what was happening after feeding – Elise became became increasingly unhappy. By the time she was a month old, she was screaming at or after every feed. Now I know babies cry. But she’d go from happy before her feed to screaming either during or afterwards. She’d cry nearly all of her awake time, then get exhausted and sleep. I’d see other babies contently laying on their playmates, gazing up at their mothers. Or just sitting calmly on their mother’s lap. I couldn’t do that. I couldn’t put her down. And I couldn’t stop her crying. The only thing that would eventually soothe her was a dummy and even then she’d be sucking and making crying noises at the same time.
Each time I went to feed her, I’d be terrified what would happen. Sometimes we’d have a good feed, but more often than not it was screaming. People would say to me ‘Oh just enjoy those newborn days – they go too quickly’. But as much as I loved my wee girl, I was finding it hard to enjoy it. I felt flat, frustrated and increasingly anxious.
Wind? Colic? Reflux?
First we thought it was bad wind. I tried every winding technique in the book. I used Rhugars then Infacol. I bought Gripe water. Nothing made much of a difference. Someone suggested she might have colic, but colic is typically worse in the evenings, whereas she seemed slightly better in the evening. My midwife suggested I see the Dr as maybe she had silent reflux. Of course, when I went to the GP she sat happily in her capsule like the dream baby. I felt like I was just an over anxious parent with a baby I just didn’t know how to settle! He checked her out said she probably just had wind.
A few more weeks went past and things continued much the same. Sometimes her sleep would be terrible. At night she’d wake every hour groaning, grunting or crying. One night I fell asleep on the floor next to her because I thought I’d just lay there for a few moments in case she didn’t settle. Two hours later I woke up!!
Throughout all this my sister was a great support. Both her babies both had reflux and also food allergies. Her first baby was very similar to Elise. She asked me if her poos were mucuousy – a sign of allergy. I inspected the nappy and noticed that they were a little bit. I kind of just thought it was normal. She suggested I cut out dairy. In my head I thought nah she won’t have an allergy. But after another week I was desperate to figure out what was wrong, so I cut out dairy.
The day I cut out dairy I also saw the lactation consultant. She believed I had an overactive milk letdown which was giving her bad wind and suggested I pump before each feed and also feed laying down. Even though it was a pain, I did it and that evening I had a much happier baby. For the first time I could just sit her in her bouncy seat and she didn’t grizzle or cry. That night we all sat out on the deck with music going and enjoyed the evening. I felt so relieved!! I thought maybe the lactation consultant was right.
The next morning, my husband gave me a latte. I was hesitant to drink it but I thought maybe it was the wind like the lactation consultant thought, not an allergy. I had about half of it. That afternoon I had a screaming baby again. So out went the dairy.
Things definitely improved without dairy. She was happier, but still not 100%. Throughout all this I did a lot of reading on cows milk protein allergy and I had read in one paper that you should challenge in 2 weeks to make sure it is what you suspect. So on Christmas day, two weeks after being dairy free I did. It was a BAD idea (note I later found out this isn’t recommended in NZ for her diagnosis). Four hours after having cheesecake and feeding her I had a very upset baby. Instead of enjoying Christmas with the family, I spent most of the afternoon in my sister in laws bedroom afternoon trying to calm her down. I felt like such a bad mum. Dairy was definitely an issue! After that her poos became worse. Her next poo was very green then a few days after that her poos became extremely mucousy. Then I noticed blood in them. I went to the GP. At that stage he wasn’t concerned. He just said continue with the dairy free and maybe the blood was from an anal fissure.
Things still didn’t improve with her crying. She was definitely better than when I was eating dairy, but she would still be upset. And she continued to have blood in her poos along with lots of mucus. I went back to the GP who referred me to the paediatrician. In the mean time, having a nutrition and science background I did some more research (often in the middle of the night while breastfeeding on my phone!!) I found a allergic condition which sounded exactly like what she had. Food Protein Induced Proctocolitis.
Funnily enough, I had a call from my GP clinic to say the paediatrician had rung to say that’s what she probably had and to stop eating dairy and continue breastfeeding. But I had already done that. And my appointment wouldn’t be for months because apart from the blood and the crying, she was a thriving baby.
So What is Food Protein Induced Proctocolitis?
Food Protein Induced Proctocolitis is a type of food allergy involving a different type of the immune system to your ‘typical’ food allergy. It’s known as a non IgE mediated allergy whereas ‘typical’ food allergy is IgE mediated. It causes inflammation of the rectum and colon which causes the bleeding. Some babies have no other symptoms other than blood and/or mucous in their stools whereas other babies also suffer from distress and cry a lot.
There are no specific tests for non IgE mediated allergies such as food protein induced proctocolitis, and for other food allergies tests aren’t accurate until 6 months of age.
Please note that hair testing for allergy is not accurate or science based and it’s likely that it will lead to unnecessary elimination and delay correct diagnosis. This article sums it up quite well.
Cows milk protein is the most common trigger but other there are others too. One study found the following triggers:
* Cow’s milk – 76 percent.
* Egg – 16 percent.
* Soy – 6 percent.
* Corn – 2 percent (all in infants with multiple protein allergies).
* Multiple (two of the above) – 8 percent.
* No response to maternal dietary restriction – 8 percent; (these babies improved after moving to
extensively hydrolyzed or amino acid-based formula)
The good news, nearly all babies outgrow food protein induced proctocolitis it by one year. In fact, 50% out grow it by 6 months, and 95% by 9 months.
From the research papers I read, around 60% of babies respond to maternal elimination of dairy alone. Obviously Elise was not one of these. I was also told by a friend to try a probiotic strain (lactobacillus rhamnosus gg) that her paediatrician suggest she use for her child’s allergy. Although the evidence is mixed for probiotics and allergy, there is some evidence that it may help speed up resolution for cows milk allergy. There was also one study and some case reviews that suggested it helps with Elise’s type of allergy too – I thought it was worth giving it a go and gave it to her every day.
I really didn’t want to stop breastfeeding. Having studied the benefits of breast milk in my nutrition degree I knew it was an ideal food with many benefits. Plus it was so convenient.
So I began an elimination diet. I had read that bleeding normally stops within 72 hours but it can take up to two weeks to stop. Generally the behavioural symptoms stop within 3 days. I cut out soy, then egg, then corn. But there was no change.
By that stage I was fairly desperate and made a decision to cut out most of the common allergens, then when she was symptom free (or if she got symptom free!) I’d add them back in one by one to find out what was causing it. In three days she was a much happier baby, but her gut was different story.
Every day I’d get nervous before I changed her nappy. Would there be blood? Sometimes I’d get a bloodless poo only to have the next one blood streaked again! It really played with my mind. I’d be so happy thinking I’d finally cracked it only to be disappointed again that she still wasn’t better. Poo changing became such a anxious time! I was also constantly thinking is this food hurting her? Should I cut that out too?
At the start I was so focused. But let me tell you, a highly restricted diet is not easy. I got creative and found new recipes and became quite good at making coconut yoghurt. But I ended up eating a very limited range of foods and it became really tiring trying to think about what I should eat, what alternatives I could use, and if I ever went out (which I tried to avoid!) I was extremely anxious about it. The problem with cutting out food groups is you also tend to reduce your range of nutrients and it can also affect your milk supply if you don’t also get an adequate energy intake. I had to plan a lot to make sure I had food in the freezer to reheat, cook extra dinner so I could have left overs and make things I could eat for snacks. I used to eat a lot of bananas as they were quick and easy! I also took a multivitamin. You should always talk to a health professional if you’re considering an elimination diet to get some guidance.
Bleeding should stop within 2 weeks, however Elise’s didn’t. I was extremely vigilant in making sure I didn’t eat anything I shouldn’t and I was an avid label reader. I went back to the GP and he spoke to the paediatrician who suggested I stop breastfeeding for 7 days while continuing to pump and use an amino acid based formula he prescribed designed specifically for babies who have allergies. I don’t know if it’s the hormones, but the thought of stopping breastfeeding made me really emotional. I thought I’d just wait a few more days then try it. After a few days we had a bloodless poo day! Yah!
I was desperate to eat a bigger range of foods as I knew my diet wasn’t really that balanced and I was over the exhaustion of thinking what to eat. So I tried introducing foods. First I tried corn. Because it’s a delayed reaction, you have to wait three to five days. That night Elise woke up lots during the night. I thought maybe it was just a coincidence. Then three days later, she had blood in her poo again. After that cleared up I tried nuts. Same thing happened. It even happened when I had hummus – so I’m guessing she reacted to the sesame in that. By that stage I thought I couldn’t go on.
While she was happier, tests from the GP had showed she still had a lot of inflammation in her system. I was disappointed I couldn’t get to the bottom of it and I kind of felt like I had failed. When there’s an issue or problem, it’s in my nature to find out the why and what. It must be the scientist in me. But I simply couldn’t get to the bottom of it myself and I knew I had given it my best shot. After almost 8 weeks on an elimination diet, I made the decision to put her on Neocate that we had been prescribed earlier.
Neocate is made from amino acids rather than proteins as in other formulas. The more broken down the protein, the worse it tastes. So being totally amino acid based means that while it’s easy to digest, it’s not the best tasting thing, especially compared to the sweetness of breast milk. When I first gave it to Elise, she had about 20ml and refused any more. I ended up just breastfeeding her. I really needed to give it a good go and decided that I would start it one afternoon. She refused it a few times then she drank a small amount, but more than her first try. This continued for her next feeds. That night she woke more often out of hunger but she would still only drink a teeny amount. It was so hard not to cave and give in and breastfeed her.
The next morning, she refused the bottle and just screamed. I was getting so stressed and was about to breastfeed her when I got a text from a girl who my WellChild nurse had put me in touch with who had two children with allergies and she was weaning her girl onto Neocate at the same time! That extra support was great and I decided that I needed to continue as I knew she’d eventually get used to it. In the end, I mixed Neocate with some pumped breast milk and she accepted it. The next day I reduced the amount of breast milk further. The third day she took a bottle of Neocate no trouble. It was such a relief. After that, there was no issues. She just needed to get used to the taste.
It’s quite funny because the first few days of formula feeding, was too scared to eat anything. I thought what if I need to feed her? But by the third day I had my first ‘real’ milk coffee and peanut butter on Vogels toast – something I’d been craving for weeks!
It didn’t take long at all on Neocate for her gut to come right. What I couldn’t achieve with my breastfeeding came right with formula.
While breast milk is an ideal food for our babies, at the end of the day, fed is best. And when your baby has food allergies, sometimes you just have to use hypoallergenic formula. I’m glad it exists.
Now I’m a formula feeding mum, I can see why they feel so judged! It’s important to realise that there are many reasons why certain people don’t breastfeed. Some people simply cannot produce enough milk. For some there are psychological issues that make it difficult.
I’m happy I breast fed for four months and while I would have liked to continue, I think I made the right choice and the paediatrician reaffirmed this at our appointment. Occasionally I feel guilty, and I almost didn’t write this post for the fear of being judged, but sometimes it’s good to know that not everyone finds breastfeeding straight forward. For those first few months, my thoughts were totally consumed by her condition, I was tired, anxious and stressed. Now Elise is on Neocate, I’m in a better frame of mind and my baby is happy and thriving. At the end of the day, no matter how you feed your baby, that’s what every mum wants .
Disclaimer: This post is just my experience, not advice. If you think your baby has an allergy, it’s very important to seek advice from your GP. Also talk to a appropriately qualified health professional before undertaking an elimination diet.