One of the scariest, darkest places we walked through as a family with a new baby with food allergies was when we realized that our daughter was reacting to foods through my breastmilk. It was overwhelming and scary, and there was conflicting information everywhere we turned. We were told breast is best, but what were we supposed to do when it didn’t feel like that was true for us? As we found out through doctor visits, research, and many conversations with other moms, there are several options you can try if you have a child reacting to food proteins through breastmilk.
- Try eliminating foods that might potentially be triggers.
This can often be time-consuming, tricky to figure out, and it can also be really frustrating to watch your baby screaming in pain while you try to figure out what’s causing the issue. But, if you only have one trigger that’s making your child sick, and you can figure it out pretty quickly (like apples or mustard or whatever) it will save you a lot of time and a lot of eating on a really limited diet. It can also save you tons of money in formula.
If you are at this point, this can be the easiest place to start and it does make sense to try eliminating one or two of the more common allergens to see if that helps before you take any drastic measures. When we were in the same position, the first things I took out were dairy and soy. Those are really common triggers because it’s hard for a little baby’s GI tract to break down those proteins. I went dairy and soy free for 3 weeks to see if there was any difference. I saw enough improvement in my daughter’s reflux and skin issues to know that I was on the right track, but she was still up all night screaming, still having terrible blowout diapers, and tons of vomiting and painful gas.
I figured there had to be more, so next I eliminated wheat (while continuing to avoid dairy and soy). I’ve had issues with wheat for the last 10 years, but at the time I wasn’t eating a gluten-free diet. I thought maybe my body wasn’t breaking down all of the proteins it was supposed to and was just passing them on to her through my milk. I thought if I cut out wheat that might help her too.
It did help a lot with the smelly painful gas she was having and after about a week and a half she was sleeping in longer stretches at night. There was still lots of diarrhea, rashes, etc. so we kept going. The doctor I was seeing at the time recommended cutting out all of the top 8 allergens, one at a time, to see if that helped. He wanted me to cut out one food at a time, spend 2 weeks without that food, and if that didn’t help we could move on to another food.
The logic here is sound – it can take several weeks for food proteins to leave your body and it’s good to only try removing one thing at a time so you know for sure what is causing issues. Plus, let’s be honest, it’s way easier to cut out just one or two things at a time and get used to living without those items and having to substitute things. If you’ve already tried this without success or if you are like me and don’t feel like you have enough time to wait this long between removing foods, keep reading for more options.
- Go on a Total Elimination Diet (TED)
This is the breastfeeding allergy equivalent of bulldozing a skyscraper and starting over. Drastic, yes…but sometimes necessary. If you have eliminated a bunch of things and your baby is still a fiery screaming ball of pain that shoots poop up its back and doesn’t ever let you sleep….then keep reading my friend.
Flashback to me at the doctor when he told me to try eliminating one food at a time and waiting 2-3 weeks between eliminations. We weren’t getting any sleep, there was blood in my daughter’s stool, and she was screaming all the time still. She was 3 months old at that point, and I honestly didn’t feel like I could hold on through 10 more weeks of guesswork and only eliminating one food every 2 weeks. I was losing my mind and she was always in pain.
That’s when the amazing lactation consultant that we were seeing at the time introduced me to the idea of a Total Elimination Diet (also called a TED). This is basically the opposite of the first method. Here, you eliminate everything (hence the name – total elimination) except for a handful of foods that are mild or that are less likely to cause reactions. Stay on those foods for a week or two and let your baby’s gut rest and get back to a baseline state with little or hopefully no inflammation. Once you start to see improvement and things are stable, you can start adding foods back in one at a time and watch for reactions.
This was genius.
But, just because it’s smart doesn’t mean it’s easy. It’s FPIES, after all – the land where the game is made up and the points don’t matter. There is still a TON of guesswork, trial and error, frustration, and possibly tears that will be involved in this process.
I started with chicken, quinoa, apples, and beef. Try to avoid high trigger foods like oats or rice. After a few weeks I added back in some other fruits and veggies – berries, butternut squash, broccoli, and pork. It kept building from there (until I got pregnant and had to switch to formula because my supply dried up, but that’s another story for another post).
After a few weeks of being on a diet like this, hopefully your baby will start to show some major improvements. If so, you can start to add new foods back in. If they are passing a lot of those foods and things are going smoothly, you can even get brave and start adding several foods at a time. If one of those causes an issue, you will only have 2-3 foods to retrial, instead of having a full day’s worth of random food that you have to try to sort through.
If you are going to start a TED, you seriously want some doctor guidance and probably also a nutritionist to help guide you. After all, you aren’t just feeding your baby’s body, you have to keep yourself going as well. It’s really super important to make sure that you are getting enough calories to actually make milk, and to pass along to your baby.
Also, there is a really heavy mental toll that being on a TED will start to take on you if you are on it for any extended period of time. It’s really really hard to eat the same 3-4 foods for days, weeks, or months at a time. It’s easy to get burned out and want to just stop eating, but you have to keep going so you have enough milk supply to feed your baby. It is hard, really hard. But, if you are on this journey already, you likely already have gotten a taste of hard. If you are reading this, considering this, then you are probably in the middle of what feels like a really hard, dark place already. Even though it’s hard, for us, it was worth it.
3. Pumping to preserve your supply and temporarily using formula
The third option is giving your baby a period of gut rest using formula. During this time, you would want to pump to preserve your supply of milk and go on an elimination diet to remove triggers from your diet. At the same time, you will start feeding your baby formula where the proteins are very broken down. There are several different kinds of formula you can try if you get to this point. I’ve given a breakdown of some of the choices in another post here.
If your baby starts to improve while on the formula, give them a couple weeks of gut rest and then you can try to nurse again once those trigger foods have all worked their way out of your body.
Pumping while you try formula is a good idea, even for people who want to switch to formula permanently. This helps make sure that you find a formula that is safe for your child so that your milk supply doesn’t dry up in the meantime. Believe it or not, there are still many babies who react to all of the formulas that are out there. Those moms may not have much choice but to keep breastfeeding.
This is also going to take some trial and error. If you are dealing with this level of sensitivity in your baby, you probably aren’t going to just be able to use the “sensitive” or “spit up reducing” formulas that you can find on the shelf at the grocery store. You are likely going to have to try something like Similac Alimentum where the milk and soy are so broken down that it’s easier for your baby to digest. If this doesn’t work, you can try elemental formulas like Neocate, Elecare, or Puramino.
4. Switching to Formula Cold Turkey
For some families it is necessary to just switch to formula permanently. We were one of those families in this situation.
When my daughter was four months old, I felt like we had finally started to figure out the Elimination Diet and I was able to start slowly adding some foods back in. She wasn’t screaming as much as before, and although things still weren’t great, it felt a little more manageable than before. What I couldn’t figure out, was why my supply of milk was suddenly tanking. I thought it could have something to do with the limited amount of calories I was getting, or maybe I was dehydrated or something simple. At the same time I started feeling really sick all the time, I was constantly dizzy, and I thought this total Elimination Diet was the cause.
As it turns out, surprise! I was pregnant.
I won’t lie, my first reaction was not extreme joy. If fact, it almost pushed me almost over the edge into a whole new world of anxiety trying to figure out how in the world I was going to keep my milk supply up as it was dropping very quickly, while I still could only eat a handful of limited foods. On top of that, I had a very tiny, very sick, four month old that was literally attached to me 24 hours a day. I couldn’t even begin to think about how I was going to manage a second child (who would most likely have FPIES as well) on top of still not knowing what all of my daughter’s triggers were. I was extremely nauseous and sick most of the day, and I felt that for us the best option was to move over to formula permanently.
If this is where you are, you may be feeling a lot of feelings about this. I was scared to stop nursing. I had been told over and over that breast is best. I believe that it is, for most people, but not for everyone. I was even told by one doctor that if my daughter was this sick while I was breastfeeding, she would probably die if I put her on formula. That was the biggest lie I wish I had known about so early on in our journey. I tried to push through breastfeeding way past the point where I probably should have thrown in the towel.
Things were pretty mentally and physically desperate in our house before I was able to make the switch. If you are like me, and you feel like you need to listen to every doctor because they are the professional, let me just give you the freedom right now to put an end to that. YOU are the mom. They may have a medical degree, but they don’t go home at night with your child. They don’t see the stuff you see day in and day out.
Trust your instincts when it comes to your baby. I’m not saying a doctor’s advice and guidance isn’t valuable – certainly we wouldn’t have made it this far without some amazing people on our medical team giving us guidance and help. But, if they say something that feels off to you or something that you know is not sound advice or that could harm you or your baby, FIND ANOTHER DOCTOR. Listen to your own intuition, keep pushing, find help another way. Be smart, and do your research. (whew, sorry..that soapbox moment got me all swept up. I’m done now.)
Honestly, though? Starting formula was the very best thing for our family at that moment in time. That doesn’t mean it will be the very best choice for every family – that’s something that you will have to figure out for yourself. But, I am here to say that if you are struggling on a TED and you have formula as an option, it’s not the end of the world.
Feed your baby. However that needs to happen. This is FPIES life, there’s plenty of massive things to worry about, so there’s no need to add any amount of mom guilt or shame over choosing formula instead of breastfeeding. In the same vein, if you are on a TED and you are struggling and you ate something that you forgot was a trigger food and you are feeling guilty and miserable because your child is sick again because of something you did, don’t hold on to that guilt. You are human too. You are allowed to make mistakes or pump and dump your milk with triggers in it or pump exclusively or whatever you need to do.
Do the best you can with what you have, whatever that looks like for you. Use this information as a guide, then tweak it to fit the journey that you are on.