My Breastfeeding Anaphylaxis Experience

When I was just 1 week postpartum I started breaking out in a hives rash on my chest and neck (and eventually arms and face) every time I was breastfeeding my baby. When you are a new mom, just gave birth a week ago, are dealing with a newborn, trying to figure out breastfeeding, and just trying to make sure the both of you survive, breaking out in an unexplained rash and not feeling right like this is so scary and overwhelming. New motherhood is scary enough. I was googling like crazy things like “am I allergic to my baby?” trying to figure out what was going on and could NOT find out exactly I was experiencing. Technically my Google search wasn’t too far off; I was essentially having an allergic reaction to breastfeeding. Every time I would breastfeed my son, Theo, I would break out into a rash on my chest and then about 30-45 minutes after breastfeeding, the rash would start to go away. Eventually, I found out that I was experiencing a rare diagnosis called breastfeeding anaphylaxis or lactation anaphylaxis. 

Because the information about this condition is so limited, I wanted to write about my experience. I felt so isolated and scared when all of this started. I so desperately wanted to talk to someone who had been through the same thing to tell me I was going to be OK. So on the rare chance that there is someone out there with breastfeeding anaphylaxis who is googling trying to find someone who went through a similar situation and needs to feel less alone— let me be that person for you. I also want to share my experience because if you are set on breastfeeding and are as stubborn as me, I want this story to give you some hope if you want to continue breastfeeding despite this hurdle! Theo is almost a year old and we are still breastfeeding!

My neighbor, who is also a nurse, and had a baby exactly 4 months before me, had broken out in hives when she was a week postpartum. While her hives turned out to be related to a new laundry detergent, she somehow stumbled across an article about breastfeeding anaphylaxis. When I called her freaking out and needing another nurse brain to help me decode my situation, she told me about what she had read about breastfeeding anaphylaxis. Although the information about breastfeeding anaphylaxis is pretty limited, we both realized that it fit my situation perfectly.

I’ll break down the timeline of my experience as well as what I did that helped me continue to breastfeed! Also WARNING that I did include photos of what my hives looked like, so if that makes you uncomfortable, maybe skip this post!

BUT! Just as a note, please remember that my sharing of my experience should NOT be taken as medical advice or recommendations. If you think you are newly postpartum and breaking out in a rash, PLEASE call your OB immediately and if you are having issues like throat tightening or difficulty breathing please call 911.

5 Days Postpartum

At 5 days postpartum, I went to a lactation specialist to help with Theo’s latch who noted I must have sensitive skin, because I had some red patches on my chest while breastfeeding. This didn’t alarm me because I DO have sensitive skin and I was also stressed out and not sleeping (because of having a newborn). My milk had come in at day 3 or 4 postpartum.

7 Days Postpartum

At 7 days postpartum I was downstairs in our living room breastfeeding Theo and snuggling him when my husband pointed out how splotchy my chest was. I hadn’t even noticed because it wasn’t itchy and I otherwise felt fine. Shortly after I finished breastfeeding though, the rash went away. Theo was feeding pretty often at this point, so when I fed him again a little while later, the same thing happened, but slightly worse than before so I snapped a picture.

I ended up taking a Benadryl (Diphenhydramine) at home and went about my day. When I fed him again, the splotches happened again (although not as bad), so my husband took me to urgent care.

By the time I got to urgent care, my rash had disappeared once again, so I showed them the picture of an hour previously and explained how it was happening every time I breastfed. The urgent care doctor asked me all of the questions I had already eliminated in my head. I wasn’t using a new detergent, I had washed all of Theo’s clothes in the non-scented detergent that was not new to us, I had not eaten anything out of the norm. The only thing that was slightly amiss was that I was taking my prescription high-dose ibuprofen that my OB prescribed me after I gave birth. I took it in the hospital and then she wrote me a prescription but I did not pick it up until maybe 5 or 6 days postpartum. So that was the only thing that seemed a bit different, but I had taken it in the hospital multiple times, so I didn’t think that it was an allergy to the ibuprofen. I later found out that NSAIDs like ibuprofen can contribute to the exaggerated allergic response to breastfeeding– so this could have played a part in things. I did stop taking ibuprofen when this happened for that reason.

The urgent care team didn’t have any clue what was going on with me. Because it appeared to be allergic reaction to something, they suggested that I just start taking round the clock Benadryl and Cetirizine (Zyrtec). They did warn me that these medications could dry up my milk supply, but as long as I stayed really hydrated it would probably be fine. They also wrote me a prescription for an EpiPen to carry with me and use if I ever started to feel tightness in my throat or I couldn’t breathe before calling 911. Urgent care offered me a steroid injection, but this carried a much bigger risk of my milk supply drying up and I wasn’t having breathing difficulty, so I declined it.

I started taking the medications like they recommended and was continuing to break out in a worsening rash every time I fed my baby. I was getting so scared and crying at this point. I felt so overwhelmed and as soon as we got home from urgent care, my in-laws arrived to meet Theo and I looked like a tomato. It was also taking a little longer for my rash to go down and it was spreading up onto my arms and face.

I called my OB office a couple hours after my urgent care visit and my OB said that she had heard of this kind of thing happening very rarely and suggested to try pumping instead of breastfeeding. This was when I was so thankful for the timing of my in-laws showing up, because they were able to help bottle feed Theo with my pumped milk while I pumped. Weirdly enough, the pumping did seem to help– I still don’t exactly understand why exactly that is. I still broke out in a rash, but it was much more mild than before; however, whether the pumping or the medication kicking in did the trick, I’m not sure.

8 Days Postpartum

At 8 days postpartum, I was still breaking out in a rash but it was not nearly as bad as that day 7 evening rash. So while I was still upset about this happening, I was encouraged that it seemed to be improving. You can also tell that my bottom lip was a bit swollen here. That is another symptom of breastfeeding anaphylaxis– thankfully I was still not having any tightness in my throat or difficulty breathing.

At this point, I had been doing a lot of research and decided to add Famotidine (Pepcid) into my routine. Like I’ve previously mentioned, I am a nurse and knew that for patients having allergic reactions, we generally give Pepcid along with Benadryl and some other drugs. H1 antihistamines (like Benadryl and Zyrtec) are known to have a synergistic effect with H2 antihistamines (source: https://jag.journalagent.com/nci/pdfs/NCI-75010-REVIEW-ASLAN_KAYIRAN.pdf and https://pubmed.ncbi.nlm.nih.gov/6114712/). Meaning that together, their combined effect is greater than the sum of the individual effect. So instead of 1+1=2, it is more like 1+1=4. I also referred to this scholarly journal that discussed urticaria (hives) being treated specifically with famotidine (https://onlinelibrary.wiley.com/doi/abs/10.1046/j.1365-2230.2000.00609.x).

At this point I was taking (and my doctor approved of) Benadryl 25 mg once in the evening, Zyrtec 10 mg once in the morning, and Pepcid 10 mg every 12 hours (so generally in the morning with my Zyrtec and once in the evening with my Benadryl).

9 Days Postpartum

Things continued to improve by this day– whether that was due to the addition of the Pepcid: I am really not sure. Regardless, the rash was a lot less scary and I had resumed breastfeeding which was going well otherwise.

10 Days Postpartum and Onward

I stopped taking photos after this day but I did post this video to my TikTok about 10 days postpartum sharing my birth story. In looking back at it, I’ve noticed that you can see a rash on my neck.

@saraannsutton Theo’s birth story part 2 💚 #pregnant #gestationaldiabetes #birthstory #birthstorytime ♬ original sound – Sara Ann Sutton

I don’t recall it getting any better or worse for about a week until all of sudden I stopped noticing the rash.

I also went and saw the lactation consultant again on this day for a weight check on Theo and to see how breastfeeding was going since I had previously had issues with Theo’s latch. I had reached out to EVERYONE when this started (including her) in case anyone had any ideas. She had reached out to a big scholarly group on breastfeeding to see what information they could give. They said that it was an extremely rare thing but that the medications I was taking was pretty much in line with the journals and literature suggested. They also suggested acupuncture, which I thought was interesting because it was more of an alternative medication recommendation and one that I had yet to hear suggested. Ultimately, I didn’t end up pursuing it because my rash eventually improved.

I ended up going to a different lactation consultant about 2 months later for a completely unrelated issue and after she looked up my chart, she said “You’re the breastfeeding anaphylaxis girl! Every lactation consultant in Charlotte knows about you!” Apparently all of the lactation consultants in Charlotte go to meetings together to discuss new practice and knowledge share. And being that lactation anaphylaxis is rare, my previous lactation consultant had discussed my case (anonymously) with a bunch of other consultants. Who knew this would be my local claim to fame 😉

Allergist, Discontinuing Medications, and Lessons Learned

My primary care doctor referred me to an allergist when all of this had started to make sure we were covering all of our bases. If you’ve ever had to be referred to a specialist doctor, you know that there is often times a LONG wait. In my case, my allergist appointment could not be scheduled until about a month later. Thankfully I was coasting on my medications and not having any real issues though.

Nothing really happened again until the allergist office asked me to discontinue all of my medications 5 days before my appointment in case they needed to do an allergy test. I was SO scared to do this. Was I going to break out in an awful rash again? Was it going to get progressively worse like it had before?

Thankfully, nothing happened. Not a single blotch or rash.

At this point I felt kind of silly walking into the allergists office because everything had seemingly resolved. She did give me some interesting information though.

She noted that she tried to find information about the condition, but had a hard time because the scholarly journals are few and far between. She told me that since I had not broken out since going off medication in preparation for the appointment, I could continue staying off the medications. I was warned that if I were to have another pregnancy, I would likely experience this again. However, she said she likely wouldn’t recommend pre-medicating me in preparation for anaphylaxis– but rather wait until it happens again and then treat. She also felt like the Pepcid was NOT necessary if I were to have another child and go through this again.

Today

Theo is approaching 1 year old and I am still breastfeeding! I had a goal for myself to breastfeed for a year, and I have fought really hard to stick to my personal goal. So if you are stubborn like myself, there is a possibility for you to continue breastfeeding with this condition (with support of your healthcare team). That being said– if you say “screw it” and want to stop because of this condition– I DON’T BLAME YOU and I support you in that. This is a scary condition and at the end of the day, the important part is that YOU are well and that your baby is fed. Whether that is by breastfeeding or formula, whichever you choose is the right decision for YOUR family.

Additional Sources

Here are some additional things that I read when I was going through this. It’s not everything that I read (I think my search history is too old for me to find now!), but I found some of this helpful.

Lactation Anaphylaxis by Flourishing Tots

https://www.qualityhealth.com/allergies-articles/could-you-allergic-breastfeeding

Hiner, J. B., & Joiner, J. (2017). Allergic to breastfeeding. Journal of Obstetric, Gynecologic & Neonatal Nursing, 46(3). https://doi.org/10.1016/j.jogn.2017.04.080

Just as a reminder that this should not serve as medical advice and you should consult with your own doctors if you are having any issues– especially if you think you are experiencing breastfeeding anaphylaxis!

If you have experienced breastfeeding anaphylaxis or are currently experiencing it, feel free to drop a comment to share your story! Or you can always send me a DM on Instagram <3