My son just turned 9 and when he blew out his candle he closed his eyes and wished hard, his wish was for his eczema to go away. He has been itching his whole life. He suffers from chronic eczema. His battle has been huge. We have tried everything and our journey has been long and grueling. Instead of sharing the millions of nightmares I will highlight what I know!
~ Children need sleep! All humans need sleep. Kids with chronic eczema do not sleep. They itch and sleep and itch and sleep and itch and sleep. This lack of sleep affects them in so many ways, attention, behavior, development and happiness. There is no “fix” for this as long as your child has eczema. You can only try different things and when they stop working, try more. Never give up and never lose focus of how important their sleep is to their health. 2- eczema = anxiety = anger = depression . After years of doctor appointments, shots, creams, brutal wet wraps (causing sensory issues), oils, baths and steroids, it still itches. Now that is depressing on its own for an adult. Add to it, the daily comments from other kids and adults, what is that rash? Do you have poison ivy, what is wrong with you? Then add to that the fact that to keep from getting staph infections you have to cover this highly sensitive and painful skin with DRY clothing on top of wet sticky ointment. Do you want to scream yet? Add to that your families’ frustration and fear and pain in the fact that they keep trying everything and nothing is helping you. It’s too much.
~Let me give you this one story . I was driving my son to an OT appointment (probably the 3rd appt) because he in a nutshell was in sensory overload. In my opinion, the wet wraps had pushed him over the top for the type of sensitive kid that he is. He was fine in the car, having a good day, not too hot, not too itchy, pretty normal. As I approached the building (about 1 minute away), he started uncontrollably itching, pulling his clothes off and digging into his skin. He was out of control, crying and itching. I pulled in and tried to get him dressed and comfort him and then finally walked in to get the OT and see if she could help me get him dressed and inside. She did and we had a good session. That night, exhausted from the day, I realized that his anxiety had now become his biggest trigger. So my 7 year fight with foods and trees and pollen and dust now had a bigger enemy, his mind.
~ Follow your gut and be your child’s advocate. So age 8 was the year of change for our family. It was when I finally started connecting the dots and learned to follow my gut.
I found a new allergist who backed my decision to take my son off of allergy shots, who backed my gut instinct that my son was suffering equally on the inside and the outside and who validated me that this was serious and not just some normal kid rash. We started working as a team, allergist, pediatrician, dermatologist and therapist. We have a 504 plan at school. We have a team that helps him get through the nightmare condition. We started phototherapy and started using saran wrap instead of cotton to wrap his body at night, we stopped trying natural products to moisturize because we finally learned that IT IS NOT putting moisturizer ON the skin that is the problem it is the fact that the SKIN DOES NOT HOLD IT IN!!! So use the cheap Vaseline, because it is the barrier that holds in the moisture. Plain and simple.
He flares from everything and every day is a new day and I try to explain it to him like this. I have migraines and I have many triggers but when it happens I take my medicine and do my routine. It is in no way the same severity but the principles are the same. He has to learn to avoid things that flare him and when he has a flare, he has to do the hard work to repair his skin. I stopped telling him that it would go away because honestly I cannot promise him something that I do not believe. I want him to be happy and healthy and understand that we all have something, some worse than others but we all have something.
So from one itchy mom to another, focus on what you know, stop looking for a magic pill instead try things that can go into your tool bag of treatments, keep your eyes and ears open to your child’s heart and mental health and treat their mental health equally to their physical health.
Editor’s note- Melissa is a mom, doing her best to take care of her children. She is not a medical expert and not suggesting what worked for her will work for you, but her experience is one that should be shared.