Breastfeeding Hives/Anaphylaxis

I’m finally coming around to a place where I feel like I’m somewhat ready to talk about what happened a mere five days after Fiona was born. For the longest time, just thinking about it made me panic and feel sick to my stomach. But now, I almost feel like I need to write about it, and just get it all out. To move these thoughts to paper, so that I can try and move on. To write so that others can find this story if they too are going through the experience, just like I was helped by another blogger while in the midst of all of the chaos. A blogger I now consider to be one of my guardian angels even though we had never even talked before that day. This may be one of the hardest things I've ever had to write, so please bear with me, as I probably will just post and not re-read or proof-read. 

It started on a late on a Saturday night. I was nursing and pumping around the clock, because Fiona’s birth weight had dropped below 10%. At some point, about 20 minutes after nursing, I started scratching my leg, and when I looked down expecting a mosquito bite, I saw a pinkish white rash crawling up my calf. I turned to my husband giggling, and said, “I think I’m breaking out in hives”. I have no idea why I thought it was humorous at the time, but had I known then what was going to happen, I hardly would have found it funny. Ryan ran upstairs and grabbed me some Benadryl. I took two, and within an hour or so, the hives started to fade. Fast-forward to the next feeding, when again, 20 minutes after the feeding ended, the hives began to reappear. I texted my mom a picture, but didn’t think too much of it. They weren’t as bad this time around because of the Benadryl, so I wasn’t particularly worried.

However, the fear started to kick in the next day, when the hives kept multiplying after every feeding.  I started researching if the hives could be related to breastfeeding, since there were no other factors in my life that were new exposures, and because they kept reappearing after each feeding. I was surprised at how many stories I saw. Some people noted that their doctors were aware of it, while other people said their doctors had never heard of anything like that. I knew without a doubt, that this was what was happening to me. My parents came over, and my mom tried putting some chamomile lotion on me. It didn’t help at all. At this point, the Benadryl was having little effect…the hives kept coming, and quickly spread to my arms, back stomach and face. Basically, my entire body. Once they started surrounding my eyes and mouth, Ryan and I decided I needed to get to the hospital quickly. Luckily, we live right near a fire station, and they rushed me into an ambulance, where I was given oxygen and a shot of Benadryl. I don’t remember much of this part except crying hysterically, “I want my daughter. I want my daughter. I want my daughter.”

Once in the hospital, I was placed on a stretcher in the hallway. The hospital was completely overflowing, and in triage mode. One of the younger ER nurses came up to me and administered more medicine, and told me not to worry. She said that post partum hives were really common, and the same thing had happened to her, but that shouldn’t worry because I was in a much better place, since she said, and I quote, “When it happened to me, I coded on the floor.” She gave me the meds, walked away, and I never saw her again. Shortly after that, I was pretty much hysterical. The hives were getting worse (of course no one told me they get worse when you panic), I was crying uncontrollably, and just yelling, “I need my baby, I need my baby. Please God, I need my baby.” Over and over and over again. Then of course, I felt like I couldn’t breath.  At this point, it could have been the hives or a straight up panic attack. All I know is that Ryan ran down the hallway, a nurse came running back; I was finally whisked into a room. My clothes were cut off, and more tubes were attached all over my body. I was injected with more medication. Eventually after hours and hours, the hives began to fade a bit. Then, just as I was about to be sent home, they began to reappear. The ER doctor decided to send me home anyway, and said that once I started all of the prescriptions they would go away. I asked if I should be given an Epi-Pen, and was told no, because if they actually got that bad again, then the best thing would be for me to come back to the hospital.

I returned home with the prescriptions, took them, and sent Ryan out the door to take Fiona to her 1^st pediatrician appointment. I asked my mom to stay just incase things took a turn for the worse. Of course, within an hour of being home, they did. The hives, which had never truly gone away since they first appeared, came back with a vengeance. There were some that were as large as my palm, and what looked like (and possibly were?) hives on top of hives. Again, my entire body was covered, but much, much worse. I called 911, and the ambulance arrived quickly. Two of the guys were the same paramedics from the first trip. They quickly agreed that this indeed, was really, really bad. I was quickly placed in the ambulance, given more meds and rushed to the hospital again. Once we got there I just remember shaking uncontrollably. I’m fairly certain my body went into shock at this point. This time, even though the hallways were just as full as before, I was rushed into an exam room. I promise you, there is no good feeling that comes from being the priority patient #1 in a crowded hospital.

I remember my mom calling Ryan and telling him to get there as soon as he could. He met my Dad at our house, and dropped Fiona off with him. A bunch of ER doctors came to see me, all baffled over what was happening. The hives seemed to be coming in a cyclical timed nature, and with such intensity. I explained that I believed the correlation was with breastfeeding, and that I had decided to stop incase that was what was happening. I kept mentioning the other ER nurse who said she had experienced the same thing. None of the doctors that were on staff at this time though seemed interested in talking to her. Some blew my theory off, some wanted to research it, and another (male) doctor asked me if he could get me a pump so I could keep on breastfeeding since it was, “what is truly best for your baby.” At this point, I had been away from my child for pretty much over 24 hours. I just remember turning to him, looking him in the eye, and yelling…”Me being ALIVE is what is best for my baby right now.” He muttered something along the lines of, “Yeah, I guess you are right about that.” I think if there were ever an appropriate time to use the term asshole, this would be it.

Eventually, Ryan was able to join me, and he and my mom waited with me to see what was going to happen. It was so hard because I could see the fear in their eyes, and I felt like at that moment, I had to be strong for everyone, especially my child who I missed more than I ever knew I could miss someone. The doctors decided to admit me, and I was taken to a different floor. Even though the floor was an all-female floor, and I had a roommate, the main nurse decided to let Ryan spend the night in the room since my case was so severe. While the nurse was very sweet and cared a lot about my case (even agreeing to the fact that he believed the link with breastfeeding), he added a large bit of anxiety when he kept mentioning that he had never seen anything like this before, and that they had a trach tube and crash cart right outside at the main nursing station if they were needed. I’m sure this may have calmed some people, but it only made my anxiety go further and further off the charts.

Around 11:00 PM that night, they were able to get an allergist to come and see me. He prescribed large doses of iv Benadryl, and pills of prednisone, zantac, zertec, and atarax. Even with all of these medications, the hives continued to come in waves every 4 hours. All of the medications made me so unbelievably dizzy, but I couldn’t sleep. All I could think about was my baby. My baby who was being taken care of by everyone but me. The stress at this point was almost completely unbearable. At some point during this time, I came across a blog of someone who also experienced a type of post-partum hives. I sent her a message, and was surprised at how quickly she responded. She shared her experience with me, and even though her hives were not caused my breastfeeding, she explained how important it was to relax and try and pray. After talking with her, a sort of peace came over me, and I was really able to do deep breathing exercises and calm a bit down. I fell asleep for a bit, which I think helped my body start the healing process.

The next morning I was seen my every type of doctor possible. Everyone mentioned that my case was the talk of the hospital (again, not very reassuring). The hives were still coming in 4-hour waves, but the intensity was waning a bit. I could barely think straight because of all of the drugs, but I focused every ounce of energy I had on getting back to my daughter. I requested to be placed in a private room so that she could come and visit me. Later in the afternoon, they were able to move me, and the next day my parents brought my sweet, sweet baby girl to me. I was only able to see her for about a half hour, since she was so young, and the hospital was not the best environment for her to be in. It broke my heart into a million pieces but gave me hope and willpower at the same time.

The next day, the hives went away. All of the doctors told me that they would probably come and go over the following weeks, just not with such intensity. However, they never came back. I attribute this to my milk drying up (which happened quickly, since I quit breastfeeding after 5 days), and the fact that I cut out all pain medication for my C-section as soon as the hives started. From what research there is, hives caused by breastfeeding tend to be due to a reaction to the hormone released during let down. Of the cases of breastfeeding anaphylaxis on file, there is also a correlation with NSAIDs pain relievers. I was put on large doses of Motrin after my C-section, so this definitely could have played a part. I also spoke with my acupuncturist (who also came and provided a treatment during the hospital stay), and his take was that my liver became so overloaded with everything I was given during and after the C-section, that my body began attacking what was in the highest concentration. Which, just so happened to be a breastfeeding hormone. The allergist seemed to agree that the liver overload theory could definitely been a major factor.

I was eventually sent home, given an epi-pen and was reunited with my baby. I didn’t quite know how to deal with everything that had happened, and a newborn, so I just didn’t. I focused on my Fiona, and marched forward. All I wanted was to bond with her, and hold her and love her. The hives wasn’t the worst part of the experience…being separated from her was. It was so completely unnatural, but I didn’t quite have the time to comprehend that at the moment. I ran on adrenaline and love and tried my best to forget about what happened.

Of course not dealing with something always comes back to bite you. About 3 months post-partum, I started having really bad panic attacks and dreams of being separated from my child again. At first it wasn’t too bad, but then the panic became all-consuming. I finally started seeing someone about a month and a half ago to help me process everything that happened. If there is anything I can recommend if you experience something like this, is that you seek therapy as soon as you can. No one can go through a physical trauma, while being away from their newborn without all of the help and prayers they can get. So, I guess that is what I will ask for right now. Any prayers or love you can send my way would be greatly appreciated.

Lots of love,

Katie