A long-awaited allergy and asthma update on Lark and Arlo (and myself, which I’ll get into later) going back about 12 months, because I’ve not really explained or gone into much depth what exactly has transpired in those 12 months.
A brief synopsis of the whole situation:
Lark was diagnosed with severe food allergies officially at 6 months of age (see her first allergy testing here), which I started to suspect after she developed eczema around 2-3 months, but didn’t anticipate the severity until she experienced several instances of food reactions and anaphylactic shock (we didn’t know it was anaphylactic shock) around 5 months. She was diagnosed with dairy, egg, cat and a possible peanut allergy at that point. I say ‘possible’ peanut allergy because the skin reaction was minor and at 6 months of age, she’d never had a peanut or a reaction to peanut so the skin test is sort of irrelevant, in a sense.
We had two choices for her, put her on prescription formula, or continue to breastfeed by modifying my own diet to remove her specific allergens. She was also taken off of solids for a short time until her immune system calmed. I chose to continue breastfeeding and began supplementing with a homemade, rice-based formula since my milk supply had gone down. I was able to breastfeed her until 14 months while supplementing and it was a perfect option for us. She was pretty healthy, despite her compromised immune system.
Lark was prescribed a nebulizer at 5 months of age, during the same time the food allergies began to progress due to asthma symptoms during food reactions and also during periods of time when she had viral infections. But she wasn’t officially diagnosed with asthma at that time and we used Albuterol as a rescue medication on an ‘as-needed’ basis.
She was allergy tested again at 12 months (see her follow up in this video). Dairy and egg allergies remained, but cat and peanut were mostly negative. I say mostly because she still hadn’t eaten peanuts and therefore never reacted and though we had cats, the allergist didn’t think they were cause for concern.
Things stayed mostly uneventful until we moved in December of 2014. Lark had several bouts with viruses along the way and we nebulized when necessary, but she had a virus in December and then was exposed to an unknown allergen (we suspect dairy) while at a new daycare and went into anaphylactic shock (we didn’t know it was anaphylactic shock), requiring intervention with a new inhaled steroid. She reacted so badly to that new medication, putting her into even more respiratory distress, that I had to call 911 and she was taken to the ER via ambulance. She had also begun vomiting in the meantime. still was not officially diagnosed with asthma at that point.
After this we continued to deal with virus after virus, attack after attack….we switched daycare to a family member, and then switched to a different family member after that and in that timeframe she experienced several food reactions in addition to asthma attacks.
Ok, so here’s the part that starts about a year ago and begins our update. I know, it’s a lot of info, but the backstory is necessary to get us to where we are today.
In June of 2015, she had a minor cold and also was again exposed to an unknown allergen (we again suspect dairy) under someone else’s care and she came home with hives and swollen eyes. She was also having difficulty breathing so we began breathing treatments at regular intervals. The next day began a series of vomiting episodes and her asthma was at a point where medicine was not helping. She’d also developed a fever and we assumed she had stomach flu. She was admitted to the hospital almost immediately due to low oxygen levels and heart rate. She was also diagnosed with Pneumonia, likely caused by vomit that had aspirated into her lungs and became infected. She didn’t have flu, she was experiencing anaphylactic shock. We were in the hospital for 3 days, on heavy-duty, intravenous antibiotics and oral steroids. (See the video here and part two here)
Up until this point, we had no idea the vomiting meant she was in anaphylactic shock. No one had educated us on the extremes of anaphylactic shock and we didn’t carry an epi pen because although she’d been prescribed one, we couldn’t afford one (they’re about $1,000). Every instance above where I stated she was experiencing anaphylactic shock, she should have been given the epi pen and we had no idea. She could have died. This was very scary for us and we felt a wave of guilt and then a wave of anger that her severity wasn’t properly addressed by any doctor and that we were misinformed about the symptoms of anaphylactic shock or that symptoms can become what’s called a ‘biphasic reaction’ and happen in phases, sometimes hours or even days later. Which is why we thought she had stomach flu, because we had no idea that vomiting a day later could happen with food reactions. But now we know and that piece of info given to us during her hospital stay is invaluable.
She was officially diagnosed with asthma after her hospital stay, but the number one ‘maintenance’ medication for it was the one that sent her to the ER via ambulance months before so we couldn’t give it to her. We continued to try and manage it with rescue medication and she was okay for a few months since she was home with me on maternity leave and not exposed to any illnesses or offending foods, thus keeping her well.
In July of 2015, after a difficult pregnancy, an angry Arlo was born. That sounds bad, but it’s true! He was so angry. I won’t put all of the details here, since I wrote a detailed post on him that you can read here. But the gist of it is that for the first 8 weeks of his life he suffered severe digestive distress and my gut told me he had food allergies. His pediatrician thought otherwise, but in being proactive so I could prevent severe situations with him, I modified my diet to continue breastfeeding, which helped slightly, mostly with his eczema, and also tried an over-the-counter ‘hypo-allergenic’ formula. At 8 weeks, I ultimately quit breastfeeding him and switched him to the formula exclusively. It was all very hard and very traumatic and I was sad to have another child suffering from severe food allergies. But he was happier on the formula. And in order to keep breastfeeding, I would have to remove dairy, egg, soy, corn and red meat from my diet. Way more than with Lark and it was borderline fringing on affecting my own health. I felt guilty that I didn’t continue with him like I did for Lark, but I always try to remind myself that he’s a different baby and that’s what was best for him. He wasn’t healed, not by a long shot, but he was much happier.
Shortly thereafter, both kids returned to daycare since I had to return to work. Work had already been really tough to manage at times because with Lark being sick so often (every couple of weeks) I was missing A LOT of work. Within the first week back after maternity leave, Lark had to be sent home due to fever, cough and asthma attack. She required oral steroids again, just to get her lungs and immune system. I missed two days of work, but she stayed out of the hospital. I did experience some work consequences, which has been hard, but I won’t get into that in detail. She was also prescribed an inhaler called Qvar, but it didn’t really work for her. And we were/are swimming in debt, medical bills and constant prescription refills. Around this time I started selling KEEP Collective, as a means to supplement lost income and help pay down debt. Basically now working two jobs, in addition to everything else. We also had several loved ones donate money for Lark which helped us with expenses and we are beyond grateful for that act of immense kindness. I try to pay it forward when I can, with donations to the Asthma and Allergy Foundation of America and for others in need…
In October we found a new allergist since we had moved and they retested her, confirming her allergies were the same, with some added new ones. It was a frustrating test because initially the nurse got the allergens already placed on her back mixed up, and I expressed my irritation to her, not to mention, she was physically rough with the testing and left bruises where the allergens were pressed into the skin, which had never happened at her previous allergist. After the mix up and trying to calm a screaming toddler, the same nurse offered her a tootsie pop, which she’s allergic to and made her cry more because she couldn’t have it. Lark cried through the entire test period, and I don’t blame her, it sucked and allergy testing is torture, I’ve been there. Stuck itching for 20 minutes and can’t scratch it or move around. So in addition to dairy and egg allergies, her peanut and cat allergies now registered higher on her test results, and we added cashew, almond, sesame and mustard. Both of which the allergist seemed puzzled about, but looking back, she had reacted to sesame when she ate teriyaki sauce and hummus on a couple of occasions. I left that appointment feeling discouraged and sad. Arlo hadn’t been seen by an allergist yet at that point, but we were gearing up for it.
Arlo was doing mostly well, but both kids kept picking up viruses at daycare left and right. In November, Lark picked up Hand, Foot and Mouth disease, a blistering rash similar to chicken pox. She had minimal blisters, just a couple on her hands, feet and diaper area, so we thought she had a minor case of it. Until the wheezing and cough started. Since we now knew viruses were a trigger for her asthma, it warranted a doctor visit (which we were used to at this point since we were going about every other week during some months) and they immediately sent her to the hospital where we stayed for two days, with a round of oral steroids again. Typically, a child with HFD would not be hospitalized, just sent home and expected to deal with it until it passes. But in our child, it meant hospital. While we were in there, we were placed in isolation, meaning not many visitors and nurse literally had to suit up in hazmat-like suits due to how contagious it is. And it was risky with Arlo because I had to keep them apart, but had to keep him in the hospital with us since James had to go to work. Eventually we went home and things were fine.
Two weeks later, Lark had picked up a cold again, sending her into respiratory distress again and sending us into the hospital again with a diagnosis of pneumonia. Actually, they weren’t sure she had pneumonia, but her lungs showed evidence via x-ray so they treated it as such. We were there for 3 days, on antibiotics intravenously and on steroids, again.
So at this point, she’d been hospitalized multiple times, had several chest x-rays and oral steroids over a short period of time and doctors were legitimately concerned for her and the toll that these treatments could have on her body. Steroids and x-rays can be dangerous for anyone, but especially young children whose systems are still developing. Treatments like this became “risk vs. benefit” for us, in which benefit won because they could save her life. But we knew something else had to be done to keep her out of the hospital.
During that latest hospital stay, the on-call pediatrician urged me to try the previous medication that gave her issues. An inhaled steroid called Pulmicort, or Budesonide as the generic version. I hesitated, and rightly so, since last time it put her into severe distress. The nurses and doctors did a great job of explaining to me the benefits of it and the possible side effects that could happen. I never thought I’d be there, being demonstrated how babies are intubated in the event they stop breathing, but there I was…alone and scared…after consulting with James, who was at home with Arlo (I was missing him dearly), I agreed to try it, with vials of epinephrine on hand and an intubation kit next to Lark on the bed, in case of emergency. I agreed to it knowing that benefit could be miraculous for her in maintaining her asthma for the long-term. And you know what, she was okay. But I don’t think I’ve ever been so scared in my life.
Since November, she’s been on Budesonide via nebulizer twice daily, morning and night, and her asthma has stayed maintained. She hasn’t been hospitalized since then, despite still being sick every 2-3 weeks. Her food allergies are mostly controlled, except for minor incidents, even from us, because sometimes we still make mistakes or contaminate things unknowingly. But with our current insurance, we can get epipens at a better price. Still not cheap and we have been paying medical debt for quite awhile with no end in sight because both kids require frequent doctor visits, allergist visits, expensive food and milk alternatives…life is crazy…but we’re doing it. I’m thankful this medication is working for her, but hopeful for a time she’s no longer on any medication.
She also saw a new allergist sometimes around December, and he’s pretty awesome. We decided to make the switch after the other allergist responded to her hospital stay with “we won’t be following up, there’s nothing we can do about viruses.” Her pediatrician was adamant he follow up, since he technically treats her asthma, and when they brushed it off like that, without even asking if she was okay, we decided to switch doctors.
The new allergist didn’t do any testing, since she’d just been tested in October, but he did run a blood panel to test her RAST numbers against foods. This is the antibody level in her blood that demonstrates the potential of a reaction. No food is an official allergen until it’s been verified by scratch test AND a positive physical reaction, so even allergy testing is vague. He also wanted to test her for a couple of rare immune disorders due to her small size and her skin manifestations. This really freaked me out and my anxiety was terribly high after that appointment, even though she was good otherwise. I also mentioned the possibility of him seeing Arlo, but he laughed it off and said “Nah, he looks healthy.” Again setting off my mama bear alarm and pushing for treatment for him because I knew his issues were more severe than how he looked.
So he wanted to see us back in about 6 weeks and we’d go over the blood results for Lark and see where her levels were stood. I also pushed for an appointment for Arlo, which was scheduled in the same day, 6 weeks later. She was also scheduled to see a pediatric pulmonary specialist to further evaluate her lungs and asthma treatment.
Phew, this is a lot more in-depth than I thought, but we have a lot going on.
So back to Arlo, who we haven’t forgotten here, but had been doing mostly okay, compared to Lark, so there wasn’t a lot to report. With being on the special formula, he wasn’t as fussy, was sleeping well and gaining weight, but his digestive issues started creeping back in. Reflux, constipation, painful gas…it was all rearing its ugly head again. Just for reference, and totally TMI, his poop was never okay on the formula, so I knew it wasn’t a perfect solution for him, but we didn’t have many options. I was already toying with the idea of putting him on the same homemade formula I used to supplement with Lark, but he wasn’t eating many solids at that point, because his pediatrician urged us to wait longer on introducing them since his digestive system was inflamed and he had, at the very least, one food allergy. So I was hesitant to take him off of formula. Deep down I really wanted to, but I was afraid of judgment from doctors, friends, etc.
In this timeframe, his eczema started getting worse again. We did eventually start solids, very slowly, and at one point I thought he may be allergic to sweet potatoes, because his skin was so bad during our introduction to those. He also seemed to have pressure urticaria (like his mother and his sister Lark. I haven’t talked about those issues yet, oy vey…). Things were getting crazy and I was anxious to see the allergist again before things got out of hand, like with Lark.
Lark was the pulmonary specialist and he was on board with her current treatment, but also wanted to add Singulair into the mix. Another medication and I wasn’t happy about it. But that appointment was pretty uneventful. Next up was the allergist. My worry was washed away when he said she didn’t have any of the immune disorders he tested her for. That was the biggest relief. But her number for her food allergies were, in a nutshell, ‘off the charts,’ meaning she’s still highly allergic, nowhere near outgrowing them and even though she hadn’t reacted to things like nuts and mustard, he still advised avoiding them completely, which we already do anyway. He also agreed with the new medication for her, so I reluctantly agreed myself (which reminds me, we need a refill!) and Lark had a great check up. Things are staying pretty well maintained and we’re thankful.
Next up was Arlo. Upon explaining his issues, the allergist finally agreed he had some shit going on, for lack of a better word. His initial thoughts were FPIES, which is really serious and EOE (Eosinophilic esophagitis) Also very serious. I won’t describe them fully, you can google them. So I was terrified. But he agreed to test him for suspected allergies first and go from there. He didn’t test him for much, because babies and food allergies are so unpredictable and not very reliable. He was tested for dairy, egg, sweet potatoes (since I suspected them) and also soy. Now going back to the beginning, I had this gut instinct he was allergic to soy. At the time, I thought it was just fear because managing a soy allergy is much harder than other allergies since it’s in so many foods. I don’t know exactly why soy was in the back of my mind, but it was, maybe because I knew so many people out there had issues with soy, I don’t know…but…he was positive for soy, and also for dairy. I wasn’t really surprised, but I was sad. I didn’t want him to have these ailments. I’ve seen what Lark goes through and I feel so bad I can’t just take it away for her. Now I had this tiny baby boy who was in pain and again, I couldn’t take it away. I’ve since grown to accept it with grace, because while it’s hard, he and Lark have each other in this battle. Someone who understands and someone who can look out for them. They’re not alone. The test was weird though, because when Lark has been tested, the reaction stays in one place. Usually your required to sit with the allergens in your skin for about 20 minutes, then they come in and assess and wash you off. But with Arlo, just minutes into the test, his entire body broke out into large, red welts and all of his eczema flared up. I’ll share a video here as well, documenting all of this, but that part was not on video because it scared me and I immediately ran him out to the nurses and doctor, who were also concerned and ended the test early by washing him off only about 8-10 minutes into the test.
So I had to re-evaluate Arlo’s diet once again after the allergist looked up Similac Alimentum (the formula he was on) and found it contains soy, making it no longer an option. Not to mention it’s still technically dairy, so there’s that… The allergist suggested the prescription formula Neocate, since the only other one (Elecare) still had soy. But our insurance doesn’t cover it and it’s about $60-$80 a can, which only lasts a couple of days. Alimentum was expensive enough and we just couldn’t afford it. So I went the homemade formula route. First starting with the rice-based mixture, and again her miraculously did a 180 with symptoms. He was happier, calmer and pooping like normal! It was a great option! But because I had to use Dr. Brown’s bottles, since they are what worked for his silent reflux, the mixture was difficult because it’s thick and would gunk up in the reservoirs, so I went researching for another alternative and found oat and hemp milks. Similar make-up to formula, enriched with vitamins, but without added sugars, corn and other unnecessary fillers that are in standard baby formula, they were a great option! So now he drinks a mixture of Pacific Foods Organic oat and hemp milks, sometimes substituting unsweetened coconut milk when our local stores are out. I mix them because oat milk naturally has high sugar, where hemp milk has none. In order to keep the right intake of protein and not too much sugar, I just mix the two, half and half. So far, these are the only allergies Arlo has. He has had asthma symptoms while sick at times, but nothing major and is nowhere near being diagnosed with asthma, so this is good!
We just went back for a follow-up in May and both kids got an A+, so to speak. The allergist also complimented how great their eczema skin looks (thanks Cetaphil). Lark is still on all meds, but she will re-evaluated in the fall and her Budesonide does may be cut in half. Arlo is doing so well and his growth is right on track. He still occasionally has stomach/poop issues, but that allergist said it could take awhile for his system to calm down, so to speak…so aside from my kids still being sick every couple of weeks, they’re doing great! It’s been a long road and we’re not sure where it’s going to lead or how long we will be on it, but we just take it one day at a time, one doctor visit at a time and one bill paid off at a time…we do our absolute best, and our kids are doing well thanks to our diligence, perseverance and teamwork.
As for me, well, I’m having a recurrence of my own asthma and allergies. You see, the apples don’t fall far from the tree as I had almost an exact infancy as Lark with dairy and wheat allergies, severe asthma, hospitalizations and allergy testing…and it’s been a lifelong battle for me as well. Usually I’m okay, but postpartum hit me harder this time around. My immune system is a rock star while pregnant and breastfeeding, so I spent 2.5 years in a state of wellness I’d never experienced. But after my hormones started plummeting early this year, it all came back with a vengeance. I’m now on several inhalers and other meds to keep myself stable. I’ve been sick about every few weeks, along with my kids, and have started seeing an allergist again myself. Foods are bothering me again, which prompted testing for celiac (negative, thank goodness, though I still have issues with wheat) and getting my sinuses and asthma under control are my top priority. I also need to evaluate my diet and identify triggers so I can get on a path to wellness, which is much easier said than done.
So our plate is full, financially we struggle, but things could always be worse, and they’re not. I’m thankful for every day that isn’t an immune system hiccup with any of us and I’m thankful for pretty healthy kids, despite their setbacks. (Read a recent post here where I share a glimpse of what it’s like to be a food allergy mom)
We are, quite literally, all in this together. Even dad, because he recently had an autoimmune type of issue recently too, but that’s a story for another day!
And if this super long post wasn’t enough, here’s a video that spans most of what I summed up in this post, just with the visual aspect…
And thanks for reading, caring, supporting, having compassion and patience with my family. I share it all in hope that I can help someone out there and in hope that it may bring awareness to the growing epidemic that is food allergies and asthma, to which there is no cure.