Alexandria shares her raw experience through multiple food allergies with two babies, opening the conversation around lack of support and maternal mental health.
Tell us about your allergy journey.
My allergy story started 3 years ago after the birth of Rosalia who at 3 weeks, was fussy, gassy, and straining until she had a diaper filled with very green stool. She had painful, explosive bowel movements, acne, rash, congestion, reflux symptoms with an occasional projectile vomit and was plagued with uncomfortable hiccups. I couldn’t put her down. She was always crying until you held her and rocked her. She started having a regular colic time between 8 pm and midnight she would be inconsolable. The only thing that seemed to help was walking around and bouncing her in my arms while singing. Her stool sample tested positive for traces of blood and that's when her pediatrician informed me about MSPI. First we cut dairy, then soy. The blood was gone, but she still had painful episodes along with colic. I was nearing my wits end. I was overwhelmed with a colicky, fussy baby who was constantly in pain all day.
I was scouring the internet and was ready to go on a an extreme elimination diet. My pediatrician suggested formula, but it was still not a guarantee since even the extremely expensive elemental broken down formulas can still contain allergens. I felt that for my daughter, breastfeeding while cutting out a few things was the best thing for her, especially since I could control what I ate. I would just make my own specialized "formula" tailored for her! The trouble was finding out what else she was intolerant to. We were referred to a dietitian who thought I was crazy for thinking anything more than dairy and soy could cause issues. I left feeling insane. Then Rosie went on breast strike only nursing for 2 minutes just to soothe and then refused the breast. We immediately had a prescription for a reflux medicine and within a week she was feeding more again. At 4 months, we saw the GI doctor who said that based on her personal experience, eliminate eggs.
I then took out eggs and within a week she was feeling much better. In two weeks she was a totally different baby. Almost all of her symptoms disappeared though her mucousy stools never went back to normal. But she was HAPPY! We decided to give it a rest at eliminating dairy, soy, and eggs. At 6 months we introduced solids and had no problems. Today at she is 3 years old she reacts to soy and too much dairy. We stopped breastfeeding at 15 months when I hit the 2nd trimester with baby #2.
With my second child Faustina, I tried to avoid dairy, soy, and egg the last few weeks of pregnancy, but I was so exhausted from the 3 am birth, the next morning I ate the eggs the hospital brought me without question. I noticed her first day she had dysphagia (swallowing back down, silent reflux). After her meconium stool was gone, her stool went straight to mucousy stool day 2 at the hospital. She immediately had congestion, a slight rash, silent reflux symptoms, smelly gas and stool, and began to become fussy. We also couldn’t put her down for more than 5 minutes before she would cry. I got no sleep. We saw a new pediatrician since Rosie and he was very unhelpful and unable to do anything unless she was failure to thrive. I felt dismissed and unheard. While holding her upright, laid-back breastfeeding, frequent burping helped, it didn’t solve anything. The only relief she had was when I held her upright so she could sleep.
Anxiety built up again as I realized that we would have a similar journey like before, but now with more allergens since I was already dairy, soy, and egg free. I switched pediatricians and got her the reflux medicine and referrals she needed. Meanwhile, I came across a clinical protocol for eliminating foods from the Academy of Breastfeeding Medicine that advised cutting out the top 8 allergens as well as corn one at a time, which I promptly cut all at once and began keeping a detailed food diary. We had some improvements but not much. We saw the same GI Rosie had and she didn't think a baby could react to anything beyond soy, dairy, and eggs and possibly beef or wheat. I felt dismissed again but certainly not ready to give up. I knew I wasn't crazy and that my baby was in pain. I also learned about the Infant Reflux Support for Gerdlings Facebook group.
I connected with other moms who had been through this and the infantreflux.org website had a wealth of knowledge and studies related to reflux. Turns out the GI was wrong. Babies can react to any protein ingested by breastfeeding mothers or in their formula. I was introduced to Total Elimination Diet and the facebook support group TED Mamas as well as their website. But the diet is extreme and very difficult. During this whole ordeal, I was crying every single day watching my baby in chronic pain straining, grunting, and wailing. I felt inadequate and as if it was all my fault. I felt like a bad mother to both my girls since I couldn't be fully present and help them. I spent every day comforting and holding my baby and trying to also keep my toddler alive. On good days, we all got showers and maybe I did a load of laundry. But chores piled up and mentally I couldn't handle much. I definitely felt I had postpartum anxiety and depression, but it was entirely tied to my baby's well being.
If she was feeling better, I felt better. So I decided to dive into the world of TED. I chose to eat turkey, chicken, chickpeas, quinoa, avocado, grapes, blueberries, broccoli, bok choy and coconut. After 3 days, something was obviously failing horribly and Fia had all bad days. After almost a week I switched my TED. My TED was oats, rice, chicken, avocado, banana, grapes, carrots, cucumber, spinach, broccoli, and coconut. Now, she did better on this TED, but something was still very off. So over the next week I cut more things out. After a week I was feeling the detox flu and my milk supply took a hit. I was so lethargic, nauseous, and foggy. She also developed an eczema-like rash across her face that got worse each day. At 2 weeks TED #2, I cut out oats and rice (big potential triggers apparently). I was down to Chicken, spinach, broccoli, bananas, coconut, olive oil, s&p. I actually felt better after eliminating the grains.
But we were still having bad days. It seemed as if once I eliminated a potential trigger, she was better the next day, but because I was eating more of another food, she got worse again. The cycle seemed endless and I felt like I would never reach baseline. I saw another IBCLC recommended by someone in the FB support group. She helped with tongue tie issues and also weighed my daughter and found that she was dropping percentiles quickly so I began nursing extra. My body responded very quickly to the extra nursing and my supply came back and my daughter's weight was close to on track within a week. But I was still eager to find a diet that worked to help her gain more weight. In that time I researched more. And I came across the Autoimmune protocol diet (AIP) which many TED moms adapted by including low triggers and rotating the foods each day as not to eat too much of any food. The idea is that as long as exposure is minimal, then symptoms won't flare up as badly.
After a week, AIP was an obvious fail for us, BUT it provided some very valuable feedback. The chicken I was eating all along was a no-go. Based on my AIP fails, I started a new TED #3 at around 3 months postpartum: grass-fed beef, broccoli, brussel sprouts, quinoa, plantains, extra virgin olive oil, and sea salt. She did the best on this TED. She still had plenty of mucus in her stool but things finally got easier. I also began home-compounding her PPI medication which helped a ton. Switching up my TED completely and also home-compounding were way out of my comfort zone but I am so happy I did it. We kept that TED for 2 more months while I dabbled with a few other cruciferous vegetable and 4-legged animal meats and she did well. She failed solids at 6 months but finally passed lamb at 8 months. Then cauliflower and then blackberries. We weaned her off medication right before solids. Finally at 11 months I started just adding things and everything was passing, except nuts.
She is almost 18 months old and she can still not have those 4 foods at all. We stopped breastfeeding at 15 months since I was in my second trimester with baby #3.
What piece of advice would you give to parents who just discovered their child has allergies?
For those just starting out on this journey, know that 1. It will not last forever. Take it one day at a time. 2. You are your baby's advocate and you are NOT crazy. Not every provider or specialist will understand this issue and it's okay to step our of your comfort zone and go with your gut. 3. Find support. Free to Feed, Infant Reflux Support for Gerdlings (on fb), and TED Mamas (on FB), a good IBCLC, and a pediatrician who will believe you and support you go a long way. Do your research and listened to stories of mamas who went through this! Lean on them.
What keeps you motivated in this journey?
Though I am not breastfeeding at the moment, I am 33 weeks pregnant with baby #3 and expect another food sensitive infant. I am motivated to do it all over again because it's worth it for my baby. I need to feed and nourish my baby and I know that by sacrificing now, baby will eventually outgrow it. It gets SO much easier in a matter of months. And there really is no quick fix. Formula may work for some moms but it is definitely not a quick fix for all. And having gone through it before and having learned all that I have, I have the confidence to advocate for my baby and eliminate foods for the next baby!
What do you wish others understood about food allergies?
I wish that others understood that allergies are real, even if they are primarily GI related and our babies deserve at least a shot at trying to eliminate foods to continue breastfeeding and get them pain (and sometimes wholly symptom) free. I wish family and friends understood the difficulty in having a child with food intolerance while managing diet and sometimes older siblings and be supportive instead of skeptical. I wish providers and specialist were more open to anecdotal evidence and listening to mothers instead of dismissing claims since there is much clinical research to be done in the realm of food sensitivities and allergies. And as a whole I wish everyone understood that just because something is difficult, does not mean it is not worth it. Our babies are so worth it.