Postpartum Hives, MCAD and Anaphylactic Yada Yada

If you can’t tell by the title… this isn’t a sweet little farm post. It’s an itchy, frustrating and exhausting path to insanity post. This post is partially in existence to regain some of the sanity I’ve lost over the last several years, while at the same time maybe shedding some light in the darkness for someone else walking a similar path.

As most of you know, I’m not a doctor. Not even close. If you need me to tell you to not take the following information as life saving medical guidance………… you’ve got bigger problems. But alas, here’s the black and white letters telling you to talk to your doctor.

FYI- this is a very detailed and long post, so feel free to skip. You won’t hurt my feelings.

This story starts about 4 months after my 3rd child, Logan, was born. One afternoon I broke out in hives over 25% of my body. This had happened four or five times in my life so I wasn’t super alarmed. But it never happened more than a few days in a row. A month later I was still breaking out in hives …. EVERYDAY. And the more I scratched the worse it got. So I decided it was time to see what our PCP had to say about it. After the usual “what have you changed in your life chemical/food/medicine wise” I was told to take a pill once a day, everyday.

On a total rabbit trail/side note… if you are asked to take benadryl, or any antihistamine for that matter, for any length of time I would strongly suggest researching benadryl and it’s link to Alzheimers. Just 3 months of daily use can increase your risk by 26%. A study was shared by a doctor friend of ours, so I feel like it’s not just another hype study. Believe me….I know hives for 23 out of 24 hours in a day absolutely sucks. But I’ve also seen first hand the pain in my grandfather’s eyes when he couldn’t remember my name when he tried to introduce me to the doctor I had taken him to see. So I chose to just get through each day as it came. Without any meds.

Sorry, rabbit trail over…….

When I winced at the thought and asked if there was anything else I could do, my doctor suggested using oregano oil. At the time I hadn’t started our oils journey, but now know that oregano isn’t the oil for the job. But I give my doctor props for trying. At the end of the day…I walked away feeling like this was all in my head and I was never going to find relief.

Fast forward 3 months and I’m laying in bed at 3 a.m. with hives from my neck to my knees. Unable to sleep…. again. After four months of daily attacks I was seriously beginning to believe if I thought about hives they would appear.

My family suggested seeing an allergist but deep down I knew this wasn’t an allergy.

I just laid there’s praying for God to help me, and the thought came to me to google “breast feeding and hives”. You may think I’m weird for suggesting God gave me a google search suggestion, but really… if He can part seas He can navigate a search engine. I put in the search and low and behold there were so many women just like me. Hives with no noticeable triggers, breastfeeding, being told to take daily pills. It was so sad to read their stories. Some even quit breastfeeding it was so terrible. I felt their pain.

Everyday I had to look at Logan (and now Lillian) and tell him, and myself, he “is” worth all this. The thought process behind post partum hives is that a woman is allergic to the oxytocin that is released during the let down phase of breastfeeding. While this may be true for some women, for me it couldn’t be linked to breastfeeding times and it seemed that way for many of the women I read about. I feel like it’s just the best idea doctors could come up with because within a few months of stopping breastfeeding the hives would stop for the women. I just felt these poor women and I were suffering from a deficiency of some sort. That makes way more sense to my deductive reasoning. Again, I’m not a doctor, but I do have personal experience. I researched vitamin deficiencies and histamine. I learned that vitamin D3 and zinc help your body regulate histamine levels.

I called my midwives and made an appointment, because I felt they would be more versed and better suited to this since it seemed linked to postpartum. Though I wasn’t totally surprised when they had never heard of it. I was so thankful when the midwife said “we can’t know about everything, and I trust a mom to know when something isn’t right with her body.” She very gladly ran the tests for vitamin D3 and zinc. I came back super deficient in both vitamins.

Hallelujah, thank you Jesus!

We had answers. I went straight to our supplement shop. I’ve had my two oldest daughters’ genetics tested and knew they had vitamin D receptor mutations. So it was suggested that I only do D3 drops under my tongue because that bypasses your receptors and puts the vitamin D straight in your blood stream. Both vitamins along with a methylated multivitamin and methylated B-complex supplement seemed to work wonders. It was a glorious break from the constant barrage of itching. But, it was only for a time.

They came back. Some days were better than others. But at 14 months old I decided to wean Logan a month sooner than I usually wean. I was praying for immediate relief but it went on for another three months. If you count all the days that I didn’t have hives during that insane year it adds up to about 3 weeks.

Oh the exhaustion. But at least it was over.

Fast forward almost two full years without hives later and I deliver our fourth baby, Lilly Mae. I held my breath as we passed the four month mark with no hives. Praise the Lord!

I thought I was in the clear.

But no. Around the time Lilly turned 5 months I could feel the tingling start up. I wanted to hyperventilate and cry. A few days later I was covered in full blown hives over 50% of my body. And had them almost every day over the next 5 months.

I survived it once, I can do it again. That was my motto.

But this time was different. I had a little piece of information this time.

MCAD.

It stands for mast cell activation disorder. I mentioned before we had our older daughters’ genetics tested. One of them has a mutated gene called MAO-A. Doesn’t sound so interesting, but it held an answer I needed.

I happened to read its description when Logan was a baby but at the time it wasn’t a gene I was looking into, and therefore it was pushed to the wayside. Randomly a year after the hives stopped I stumbled across this gene description again. However, this time I decided to google MCAD which can be associated with this gene.

Staring at me in black in white letters was the explanation of my attacks. I was in disbelief. I didn’t look into it any further other than archiving the info in my brain for future use.

When the hives started with Lillian, I went straight after information on MCAD. It’s like drinking from a firehose. Genetics are so far above my pay grade it’s laughable. I probably had 15 hours of heavy research under my belt and I didn’t know much more on how to control/help this gene function properly. So I left it many times just to pick up the google search bar again after days of no relief and complete desperation. Each time I would find a new possible trigger to test or something to try to help.

On a really bad day this past October I sent a picture of my face to my mom. She couldn’t recognize me. Hives usually only happen on my face on super bad days. I believe I had had hives for 3 days straight at that point without even an hour break. So off to the google search bar I went again for some shred of light. I clicked some link on MCAD or MCAS and there was a list of triggers. I knew almost all of them by heart and 95% of them triggered mine.

But this listed contained one I had never come across before.

Lack of sleep.

Can I see a show of hands of all the breastfeeding moms who’s babies keep them up all hours?!

All of you?? Whaaaaat??

But it had to be put to the test. Vitamins that control histamine only helped for a short period. Although lack of sleep did make sense. Logan was my worst sleeper for various reasons, but some nights I was lucky to get 45 minutes in a row. Lillian had been an amazing sleeper until she got a cold and couldn’t breathe through the night; right about the times the hives flared. We had gotten into a bad rut of nursing back to sleep every 2-3 hours even though she wasn’t sick anymore.

Could sleep actually help at all? It can’t be that easy, I told myself. After I told Chad that sleep might make this go away he was willing to do whatever I needed him to. LOVE that man. I remember it was a Saturday and after a long night with Lillian, Chad took her and let me sleep till almost noon. I waited the rest of day for that tingling sensation to begin that makes me almost panic because I know the hives are coming.

It never came.

The next day after church Chad let me take a nap. The hives still stayed at bay. I couldn’t believe it. That was the longest I had been without hives in 5 months. But surely it would rear its ugly head again. It can’t be this simple.

It is exactly that simple. For me at least. Now if I have hives it’s because I had less than 6 hours of sleep. It’s been a month and a half and most of those days have been hive free. And the days I do have hives I know it’s going to happen because I didn’t get the rest required. I always knew your body repaired itself while you slept, but had no idea what that meant for someone with mast cell activation disorder.

Since realizing this miracle of knowledge, we have since figured out how to help Lillian sleep through the night. It was the night light in our room. Which happened to be Logan’s problem too. If Lilly Mae woke up to light she would want me to get her out of bed because she could see me (she sleeps in a crib next to our bed). But once we took the night light away she would wake up, cry for a minute and go back to sleep. At first that happened for several nights in a row. Now she sleeps from 8pm to 7 a.m.. At this point if I have hives I can only blame myself for staying up late when I know the consequences.

…. Like writing this blog at 1 a.m… gonna feel it tomorrow. But it’s worth it. The children don’t let me type a word barely during the day. But that is as it should be.

I don’t understand all the “why’s” but I do understand that I feel like I’ve been given my sanity back. I don’t feel like breastfeeding is just something to hurry and get through anymore. I don’t feel like I’m in a constant state of panic. I loved feeding my first two babes, but I wished Logan’s time away so fast because I was suffering. I just pray this finds the person who needs it. God layed it on my heart to share. It’s not fun airing all your broken parts. I personally prefer cute farm convo. But there is a time and a place for everything. And everything in its time.

Thank you Lord for taking me one step at a time in the right direction when I could not see.

For anyone suffering these symptoms or know you have MCAD/MCAS. I encourage you to do your research. Find your triggers. Some things that helped me since I chose no meds because I didn’t feel comfortable while breastfeeding or for my own body’s sake…

– the vitamins mentioned above
– sleep
– lavender essential oil (the real deal, not cheapo walmart oil or lotions) rubbed on hives
– extremely high % chocolate bars 80% + (obviously above my pay grade, but somehow helps your body make(or possibly obsorb) bh4. Which is something people with MCAD are usually deficient in.)

And come on… it’s chocolate… do we really need an excuse?!

I didn’t think so.

Much love friends!

Photo Credit: Alli Givens, my sweetheart.