It started when he was born - he was always, always crying in between the sweetness of his personality. Today, we now know he suffered from both MCAS and EoE from birth which causes a great deal of discomfort.
But in addition to those diseases, when Atticus was 3 months old he developed horrendous eczema that spread like wild fire. Within two weeks it covered his entire body, his face being the absolute worst.
Symptoms continued to progress:
His first year of life was dictated by complete pain management. We lived, breathed, and entirely focused on making him comfortable. We did everything to maximize on giving him the most normal beginning despite our very strict limitations. I wanted to visit friends and family and go out with my new baby but every time he was in the car seat he would scratch his face to a bloody pulp. So if I was home alone I wouldn't drive more then 10 minutes max. If Danny was with me then I say in the backseat. In addition, new environments made his skin worse, from air pollutants, new fabrics that touched his skin, and animals. It was incredibly hard to take him anywhere so it was a very isolating time.
Constant nursing and spitting up
Failure to thrive
Struggling to meet physical milestones
Hyper sensitive skin
Sleep was another issue. Atticus had to be held for every nap and it took an incredible amount of time to soothe him. Making it hard to have guests over as well. It took us an average of 2 hours to soothe him to sleep EVERY night. He woke up every single hour at night, every night. He slept in our bed because he would scratch his skin in his sleep and would wake up covered in a lot of blood. I spent most nights more awake then asleep.
We sought help from doctors but they were uncomfortable treating his skin in fear of topical steroid addiction and basically left us with zero help. After taking more foods out of my diet (I was already dairy and gluten free) his skin started to improve. We did NAET treatments and that radically changed Atticus's skin however, it does not treat MCAS -- which we were not aware of this syndrome at the time. Therefore once he began table food that began the new chapter of health issues. We also did a zinc and lemongrass lotion from The Home Herbalist through etsy:
Vomiting. Hives. Itching. Redness. Swelling. Immediate GI distress. Lung distress (sneezing, coughing, crunchy sounding breathing). Pain. Confusion. -- It felt like every time he ate food he had an IgE allergic reaction, more often then not it was anaphylactic. Unfortunately we were very uneducated and unsupported by our medical professionals despite our constant request for help. Looking back there were countless times that he actually should have been administered an epi pen. In fact, one time at the ER the doctors didn't treat him and monitored him for maybe* 20 minutes then sent him home. It is only by the grace of God that he did not go into shock before we were educated.
Symptoms progress in waves, most of them we were desensitized to since he was our first kid and we deemed everything to be "normal." And our doctors dismissed our concerns or told us "he will grow out of it," "he's too young to see a specialist or an allergist."
- difficulty swallowing
- periods of GI distress
- occasional vomiting
- throat clearing
- histamine flushing
- low grade fevers
- failure to thrive
- mild sensory processing issues?
- reoccurring hoarse voice
- difficulty sleeping
- low immunity
- muscle weakness
- skin sensitivity
In August 2019 Atticus experienced anaphylaxis so severe that he went into shock. He received epinephrine at the hospital yet still struggled to stay awake, and ultimately passed out in my arms for a few hours. It was a terrifying experience as the emergency room staff acknowledged we could have lost him and his situation was quite dire. Glory be to God that he recovered well!
At the end of 2019 Atticus was diagnosed with asthma due to our neighbors severe second hand smoke. At the beginning of 2020 he got to a better place though his baseline is a lot different then what I should have been. He his health was extremely fragile.
March came and hit him with a huge flare that no one could figure out. And thanks to covid-19 we could not be seen by any specialist and told us it was probably a viral infection even though we were adamant it was not. At times it was asthma but then he would be very sick other days with no asthma symptoms. Our doctor said maybe try a seasonal allergy medication but we could not give it to him because he was allergic to the ingredients.
Now we know it was MCAS and EoE causing him a great deal of pain. Because this all happened again in July 2020 without any obvious triggers such as environmental allergies however it was more severe with many additional symptoms.
After speaking to a pediatric naturopath who specializes in childhood chronic diseases she immediately knew one piece of the puzzle sent us to many specialists that could diagnose and treat him. In Sept 2020 Atticus finally got his diagnosis for EoE and MCAS and started treatment which was all sent to a compounding pharmacy so that he would not have an allergic reaction to the inactive ingredients of the medications.
While Atticus's EoE and MCAS are greatly improving we are noticing new symptoms, ones we are not ready to publicly share. Our doctor once explained that both EoE and MCAS can be triggered by a greater imbalance/disease in the body. Today we are highly suspicious of this to be the case. Currently we are waiting to be seen with neurology and physical therapy for in depth consultations and tests. Lord willing it will be a minor issue with many avenues of support and treatments.
When this next aspect of his health is more clear to us I will have do another post about this part of his journey. Until then please pray for us!