Tag: what i am

Watching your baby break out in hives while he is still laying on you, actively feeding is a bit of a life changing experience. This is how I came to eat only 10 foods, for ten months, to keep our son safe.

You might have read on Felix’s story, that he reacted to many, many foods. I think I stopped counting when the list went past 20. Every. Single. Thing. I ate seemed to pass through into my breastmilk and the effects on him were sometimes instant.

It all started when he was about 2 days old, after every feed he seemed to break out into little hives. I googled it and asked the midwife, but in a bit of denial I just hoped they were the ‘newborn rash’ I read about in my online search, after all, whose baby shows signs of allergy at two days old! Deep down though, I knew something was not right. By 10 days old Felix was having reflux, uncomfortable bouts of colic like screaming, little to no weight gain, and dark green and mucous filled stools. While we could attribute the low weight gain to a tongue tie issue we were working through, when I showed the midwife one of his nappies she agreed that it looked like he might be having a reaction to something I was eating, so I cut dairy and soy out of my diet.

After 2 weeks, I saw a small improvement, in that he would sometimes have a normal newborn mustard coloured poo. How exciting! Poos – colour, texture, smell …  a common topic of conversation in our household! Something that can make one happy, relieved, excited, or worried and anxious around here, who would have known poo could have so much influence. Anyway, he was still having reflux, colic, rashes and after two ‘normal’ poos he would then produce an intergalactic green frothy number or something that resembled a tissue after you have blown your nose! Not good. I noticed particularly after I ate eggs, things went downhill. So when he was about 3 weeks old I decided to eliminate eggs, nuts, fish, wheat and peanuts from my diet. When you are used to bread as an easy go to staple and rely on things like nuts and eggs for a quick snack, a total and immediate ban of all of the above really rocks your world. I would have 5 mins to quickly run to the kitchen to make a snack and would find myself frying up some broccoli and bacon! Even though I had heaps of experience with label reading from Ashton’s allergies, doing it for myself was a whole different ball game. Should I avoid traces of? Packed in a facility with? Where the heck is dairy in this – it is not in the ingredients list but it’s in the allergen warning! Heads up – usually it’s in the ‘colour’ or ‘flavour’ description on the label. Now I thought I had a pretty healthy diet before, but it was surprising how many times I used to reach for toast as a snack or grab some sort of chocolate bar at the supermarket, or get a muffin with my coffee. You don’t realise until you can’t do it anymore! It was quite an eye opener.

About 1 week into the new can’t eat anything diet it was becoming apparent that we were not seeing improvements like we had hoped. Plus, Chris and I were getting quite wary with taking turns to hold Felix for over 6 hours every night while he screamed inconsolably. I’ve never prayed so hard for a baby to take a dummy. He didn’t, by the way. He just gagged on it and spat it out. Then resumed screaming. I remember feeling good that we were trying something, because what did we have to lose. But the feelings of overwhelm, loneliness, and confusion are still so raw. Why him, why us? So much of our culture revolves around food, if I wanted to associate with other adults then I had to face the disappointment of not being able to join in at morning tea, no shared biscuits, no sorry you can’t make me a coffee. And so many people just don’t understand, ‘surely one egg won’t hurt?’ or, ‘It’s only got a little bit of dairy in it?’ Even health professionals had varying opinions, some of them adamant that food proteins cannot get to baby through breastmilk, most of the ones who understood were the people who have experienced it themselves. Honestly – who sits there and tells a mama whose baby has clearly had a reaction to something she ate, that it’s impossible – here is the baby, here is his rash, here is his screaming, here is his weight gain (or lack of), and if you don’t take me seriously in a minute I will have to show you a picture of his shit, yep I have a photo of that too, several actually, just incase people like you thought he might be reacting to thin air!

After about two weeks on the can’t eat anything diet it was time to take drastic measures. I cut my diet down to rice, pumpkin, bok choi, carrots, kumara and lamb, plus salt and pepper. This is what I referred to as my Total Elimination Diet (TED) sounds about as exciting as it was.  If I thought that the first attempt was hard this was level twelve hundred. What on earth goes up to level twelve hundred, nothing, because it’s so extreme! Breastfeeding is hard work, and hungry work, I was hungry all the time and found myself needing to eat huge amounts of food. Which totally sucks when you only have about 6 foods to eat. I would be at the supermarket every few days stocking up the trolley with huge amounts of my 6 safe foods. Lamb mince, lamb chops, lamb loin, lamb shoulder, lamb shanks – how many ways can you eat lamb! Some of the things I found myself creating was pumpkin risotto, pumpkin soup, lamb broth with safe veggies, roast meat and roast veg, fried veggies and meatballs, meat patties, lamb chops with rice and steamed veg, kumara chips with pumpkin puree for dipping, lamb meatballs, grated carrot and kumara fritters. I rendered lamb fat off the meat and used it to fry and roast in. During this extreme elimination phase we had to travel up to Hamilton to have Felix’s tongue tie lasered a second time as it had reattached. I had to cook myself enough food for the two day trip there and back, it was just so time consuming. All with a 3 year old and new baby to look after too. But I trucked on because what else was I going to do!

It’s crazy, really, when you see someone walking down the street or strike up small talk in the shopping queue, you just have no idea what they are going through. They might have just lost their Mum to cancer, or divorced their husband or wife of twenty years. They might have a child in hospital, or they might be doing it tough fighting with mental illness. They might also have a very sick baby that seems to be allergic to pretty much every food and the only way to keep them alive is to live off hardly anything to feed them safe breastmilk. You just don’t know the internal struggles. To the outside world I just looked like another Mum to a new baby, doing it tough with some sleep deprivation and colicky baby. People would say – ‘oh I know, i’ve been there too, it’s so hard. Yes my baby used to scream when I ate chocolate.’ The outside of me would smile and nod – yes that bloody chocolate, I bet it was tough avoiding chocolate for a few weeks. The inside of me would dive onto the floor and roll around laughing an uncontrollable, loud and rude cackle, slapping my hands to floor and snorting “Fucking chocolate, oh you poor thing, I just can’t begin to imagine all the extra work, the worry, the pain, the suffering, all the extra food prep and same food day after day, not being able to eat anything outside the house”. Then id scoop up my dignity and smile and nod some more. By the way, If you were someone who said this to me, in no way, shape or form did I judge you for this (i only laughed at you internally while I wallowed in my own self pity) because I actually do understand. It doesn’t matter if we are avoiding one food, or ten (or seven hundred and forty six) the change in routine, the move away from the known, the need to be cautious, careful and a little bit different, is still the same. Having to turn down food at every corner and the lack of understanding and support from the people surrounding you. The worry over the happiness and health of our babies is still the same. Though there are not too many people out there who can truly relate to the extent of what I went through, I can relate to them, to you, the ones who lived a snippet of our lives.

About 1 week into the new diet we started seeing some really positive improvements with Felix, he was content and happy sometimes, and was only crying for a short time in the evening then settling off to sleep. Hallelujah! It was so, so difficult for Chris to watch me go through the torture of a 6 food diet but once he saw the change we both knew it was the right thing to do. After two weeks I was pretty damn sick of eating the same food, the smell of lamb cooking nearly made me gag. It was time to branch out and try some new food! First I tried potatoes, solely for the purpose of if we were out I might be able to order some hot chips! It seemed to be a success. Next I thought I might try oats (looking back now this was a stupid choice, but if anything, it helped to seal the deal in letting us know there was actually something quite wrong with Felix!) So I ate oats for breakfast and then I breastfed Felix about 30 mins later. As he was laying on me feeding I saw his body begin to break out in hives right before my eyes. They started on his face and around his mouth and by the end of the feed were spread around his entire body. He then proceeded to scream inconsolably for 3 days straight. Never again! So I was stuck on my 7 food diet for another week while we waited for him to come right again. In the 4 weeks of my drastic diet I managed to lose 15kg with the scales moving down every day. I gained about 20kg during pregnancy so this was okay and I was at least feeling good to be back in my old jeans so soon!

Next I tried some chicken, please someone give me anything but lamb! Chicken also seemed to be successful and when I was alternating chicken and lamb the green nappies became less common. So using my newly found detective skills I decided to remove lamb and just eat chicken. Because naturally when you have just added a new food into a 7 food diet you should probably up the anti and take another one out, right? This became the start of my follow your gut mantra. Because it turns out he was reacting to lamb and life after chicken was just perfect!

Next I ate avocado and coconut which were a roaring success. Especially coconut. It was probably the most exciting thing to happen to me that year! Coconut oil, coconut cream, coconut milk, coconut flour, coconut butter, coconut flakes, desiccated coconut, oh the possibilities! Best day of my sad little 8 food existence. And fat, oh glorious fat, I was still losing weight really rapidly so I had to eat a spoonful of coconut oil at every meal. I stayed on this diet for another two weeks just to relish in this new baby we now had, too scared to upset the apple cart after all the hard work. It was salad season, and I remember cucumber and lettuce also being exciting introductions (yep, exciting life I lived at that point). I also drank chamomile tea and it was so nice to have a hot drink. I had to take a tea bag with me everywhere because the certain brand of organic chamomile was the only one we knew was safe, it wasn’t worth risking trying another. There is just something so humbling about being able to enjoy a hot cuppa with other people. It’s what we are made for! To eat and drink together, and that was taken away from me. It’s really hard, harder than you’d ever imagine, knowing that you cannot join in because it will make your baby really sick if you do, and trying to explain to people every time, he has allergies and I can only eat 8 foods. It did make for an interesting conversation starter though!

So as the seasons changed and different foods came in and out of season, i’d swap out the cucumber for asparagus and lettuce for courgette. So over the year the veggies were varied a bit, but generally my diet didn’t include more than 10 different foods at a time. When avocadoes became $8 each then I swapped them with olive oil. Generally I served the whole family the same dinner as me, i’d just add extras into theirs like a different meat, eggs, nuts or seeds, so it wasn’t too much extra work, because constantly having to prepare my food relentlessly, every day was really tiring. I couldn’t have any fruit, oh how I longed to just eat a banana, all the foods in my diet had to be cooked or prepared in some way first. My one treat of ready made food was Proper Crisps potato chips – mostly because they are delicious but Felix seemed to have no adverse affects if I ate a bag of these whereas if I ate a bag of standard potato chips he’d become a bit fussy – the only difference is Proper Crisps are not cooked in canola oil like the others. I remember coming home on playcentre day, starving, not having had anything to eat for hours and I would eat an entire family sized bag of Proper Crisps just to get me through putting Felix down for a nap then preparing myself some lunch. I totally justified by saying it might stop me from losing another kilo! And they were delicious.

At various times, I tried eating apples, bananas and pears which all caused horrific acid-burn-everything-it-immediately-touches-nappy rash and body rashes. I gave up on fruit after that. And I tried a couple of nuts (almonds, cashew and walnuts) all of which caused varying degrees of hives, gastro upset, fussiness and rashes. He reacted when I ate hummus, I was never sure if it was the tahini or the chickpeas so easier just to avoid them both! In fact he reacted to anything that wasn’t the 10 safe foods. 

During this time, I was training to be a breastfeeding peer support person, and every week we would have a lesson and then lunch. Instead of buying in the usual affair of pre-made sandwiches and slices etc, the two lactation consultants running the program would bring in a hot roast chicken and salad items and buns for a build your own sandwich lunch so I could join in and eat the chicken and salad stuff. I don’t think I will ever forget gestures like that. When you are living in a world where you pretty much cannot eat a single thing outside of your own home, going to a meal once a week that I didn’t have to prepare was the stuff dreams were made of! I looked forward to wednesday every week! If you know someone who is on a limited diet, please don’t be scared to help out by making something, ask them what they can eat, or for a copy of a recipe they make (make sure you specify oils etc with them!) and make them a meal or cut up or prep some safe veggies or meat so it’s easy for them to prepare something for themselves. If YOU are on a limited diet and in need of some help, don’t be afraid to trust someone, be specific, and ask for help! I think everyone got too scared to help out because they didn’t want to make Felix sick, but in the end I gave out some recipes I had been making and my Mum cooked some food for me, and it was such a sanity saver, I just wish I had asked for help sooner.

By the time Felix was 5 months old, I had lost 25kg. All my pants were loose, I look back now, on photos of me around that time and cringe at how gaunt and bony I looked. I would try really hard to eat enough, but sometimes there was nothing in the house safe for me to eat! Or we were out and it was difficult to find safe food. Those days were definitely down days, the days that I was so hungry, and nearly wasting away, but there was nothing substantial to eat, or Felix was grizzly and I would find it difficult to find time to prepare myself something or finish a meal. Those days I just wished the food fairy would show up on my doorstep with a hot, safe meal. Luckily after another month or so, my body started to adjust to its new diet and I stopped losing weight.

When Felix was 8 months old we finally got to see the allergy specialist, who diagnosed him with FPIES, – an allergy that presents in the gut, and he said that even though all the literature suggests that babies with FPIES don’t usually react through breastmilk, most of them actually did. I had suspected FPIES for quite a while because when I had searched and asked around this seemed like the common diagnosis for babies who react to all sorts of strange foods like kumara, banana, chia seeds and most commonly, oats and rice.  And it turns out there is a whole network of Mum’s out there who are living off ten foods (and sometimes less – up to 3 foods) to try and provide their babies with safe breastmilk. Some here in NZ, others in Australia, and an abundance over in the US! I was not alone, which was humbling, but scary to know so many other parents and babies were sharing my reality. There were some Mum’s in the US, with FPIES babies, living off 3 foods! I got to meet some of the NZ Mums when I went down to Wellington, and being in the same room with people who actually know first hand what you are going through is something words struggle to describe. Through this i’ve also met a bunch of other mums who have eliminated foods for the sake of their babies, and even though they harp on about how well i’ve done, I take my hat off to every single one of them. They are all truly amazing, dedicated and strong in every way. We share a strong sense of drive, determination and a hunger for knowledge, always looking for what else we can do, and searching for answers beyond the standard information given to us. Like I said, it doesn’t matter if you are avoiding one thing, or only eating ten, a special bond can be shared between the mum’s who have sacrificed food for the sake of their children’s health. Food is life! It’s a big sacrifice, and one that takes true dedication and drive.

Just before Felix turned one, our breastfeeding journey came to an end. With no end (so to speak) in sight for me being able to expand my diet anymore, and him not being able to tolerate any solid food, a lack of weight gain, and one exhausted Muma, it was time to call it quits. I tried my very, very best and could not have done any better if I tried. Felix was waking every 3 hours around the clock to feed and despite me producing over a litre of breastmilk a day, he was not gaining any weight, a blood panel also showed he was lacking all sorts of important nutrients, I guess because of my limited diet for so long, and his inability to absorb nutrients due to probably reacting to one of my ten foods.  So we tried a hypoallergenic formula (which is a bit of a story in itself – but we got there in the end) and just like that we were done. We are so lucky that the formula is safe for him, because some FPIES children cannot tolerate any formula and the mothers have no choice but to keep eating 3 foods, to produce a safe nutritional source for their little ones. We are lucky, and I am grateful. There were days where I cried into my chamomile tea, and hated the world because I couldn’t eat an apple or a banana. There were heartbreaking moments of watching our little boy suffer when I ate something he reacted to. There were many moments, when I stared into blue eyes that reflected pure love, and I was so proud that I was able to nourish my son, though my hard work and dedication. Breastfeeding a baby with allergies is probably one of the most challenging things I’ve ever done, but I would not change this experience for the world. 

 

On a side note, if i still have you here, you are probably wondering, ‘what on earth lady – why didn’t you just give him the formula sooner!’ There are many, many reasons why, some physical, some emotional, and some scientific. For a start i have read a large number of research papers on the role breastfeeding plays in allergies, the gut microbiome and the immune system and knowing how seriously beneficial and how amazingly complex breastmilk is for a babies gut, i just couldn’t not try! Reactions or not, there are studies that reveal the microbes present in breastmilk play a very important role in the way digestion is formed and how the gut works, allergies, essentially all lie in the gut and if I could do something to help promote good gut microbes and bacteria, then that is what I would do! Breastfeeding was addictive, the surge of oxytocin at every feed was intoxicating, despite all the struggles. I did not experience this with Ashton, as i didn’t breastfeed him, and i have developed a very special bond with Felix through feeding him. Knowing what I know, and even after what we have been through, I’d do it all again in a heartbeat.