I never thought I’d type the title to this post, but I’m so happy to be doing so. It’s been a long haul the past 26 months, and I had gotten really weary the past 12 months. You see, it was 26 months ago that Superman was finally diagnosed with asthma, and 12 months ago that I realized he had basically stopped growing.
As a first-time parent, I was clueless about asthma, and thought he was just suffering from a really bad respiratory virus the first time we had to take him to the ER. Once admitted the nurses kept saying “asthma” and “asthma action plan”, but no doctor ever said “Your child has asthma”. Needless to say, I was confused and thought the nurses were overreacting. He was, of course, given nebulizer treatments, prednisone, and a prescription for Albuterol, the asthma rescue inhaler. Even after a follow-up with his pediatrician, she didn’t diagnose him with asthma.
My dad and I rushed Superman to the hospital late one night, for the 4th time. He just couldn’t catch his breath at all, and it was getting extremely scary. Superman was coughing so hard, and out of breath that I couldn’t wait on the respiratory team to get there to begin his treatment….so I did it myself. Later that night he was admitted for the night and was able to go home the next evening.
Finally, (and not because I wanted it), the other foot fell, and I heard the words “Your child has asthma”. In some ways it was a relief, because I was ready for these late night ER runs to come to an end. It was then, while in the hospital and after diagnosis, that he was prescribed Flovent and given an Asthma Action Plan.
Since that hospitalization, we’ve not been back to the ER for asthma! That’s great, especially since it’s been over 2 years since he started the Flovent. But….
about a year ago I realized that he wasn’t growing. At 5 1/2 years old, he was only 40 inches and a mere 30 lbs. He was cranky, tired, became a picky eater and had no appetite. He was irritable, had trouble falling asleep, and had no energy. My biggest concern was that he hadn’t grown taller or gained weight in awhile. I brought it to the attention of our pediatrician at his 5 year well child check, but she wasn’t concerned and attributed his slow growth to his limited diet. I was still concerned, and after a comment from our allergist, I was even more concerned. I simply asked our allergist, “If he were your child, would you be worried and take him to the pediatrician? “. The next day I made an appointment with our pediatrician (a new one), and thus began many months of doctors appointments and tests to see what was going on.
Most of his blood tests came back normal, except for an elevated bilirubin and one marker for Celiacs Disease. However, at age 5 years and 3 months, his bone age X-ray came back to reveal his bones were the size of a 4 year old. No surprise there, and at this point (October 2014), strangers were asking if he and my 2 1/2 year old daughter were twins.
In April 2015, he started getting small dots around his eyes. They never itched, but kinda looked like small pimples. In late March, I talked to our allergist about an unrelated topic, but when asked how Superman was doing and I explained the “rash”, he recommended a Neosporin for eczema. The cream didn’t work and the “rash” continued to get worse and spread.
Fast forward two weeks, just two days before our routine allergy appointment, and the rash was now on his cheeks and wrapped around his chin. It was red, puffy, and inflamed. Our allergist prescribed an antibiotic for Impetigo and sent us on our way.
After two weeks it didn’t work and he referred us to a dermatologist. Another round of antibiotics and an anti-inflammatory cream later (Eledel), the rash was still there. So, on to a different cream (an antibiotic cream used for acne patients) and it still didn’t work after two more weeks. Dermatology was stumped, but came to the conclusion that he had steroid induced acne. It’s rare, especially in a 5-year old, but coupled with his growth delays there was really no other explanation. Back to the allergist we went to discuss a steroid free medication for managing his asthma.
Superman is now on Singulair, a 5 mg chewable, and over the past two weeks we weaned him off of his QVar (we had switched from Flovent a few months ago, hoping it would fix the growth delays). He still has his Albuterol rescue inhaler to use when we need it.
Let me tell you the changes I’ve seen as Superman has weaned off of his inhaled steroids….
-his acne is healing
-falls asleep easily
-he already looks taller
The biggest change for me that I notice, is that I see him SMILE and he seems HAPPY, for the first time in a LONG time. He isn’t an irritable boy that feels yucky anymore. I really feel like inhaled steroids stole my son from me the last two years. He had become very hard to parent, as he was just never happy or pleased about anything. I truly believe the steroids have slowed/stopped his growth and were almost to the point of poisoning him, and the acne was the result of the dangerous levels of steroids in his little body (I’m assuming they can build up in some sort of way).
The exciting, positive part? The fact that after 10+ doctors appointments (yes, at least 10 trips to the pediatrician, GI, endocrinologist, dietician, and allergist) between October of 2014 and May 2015, we may have finally found the cause of Superman’s delayed growth and acne. I am beyond ecstatic and can’t wait to see how Superman continues to improve and grow!
If you are having similar reactions in your child who is taking a daily inhaled corticosteroid (ICS), talk to your doctor. Because acne and growth delays are a rare side effect, it took a long while to convince any of the doctors that it was the ICS causing the “rash” and growth delays. For us, it got to the point where there was no other explanation, and I’m praying that Superman’s health starts to turn around.
**I am not a doctor and this post is not intended to be medical advice. I am a mom with a child with life-threatening food allergies, environmental allergies, and asthma, and I am simply sharing our experience in hopes to help someone else going through a similar situation. Please consult with your board certified allergist or pediatrician for your medical needs or before stopping/starting any medications. I do not recommend stopping inhaled asthma medications without a thorough consult with your doctor. Asthma is a serious condition, and can cause death if not well-managed. Those with life-threatening food allergies and asthma need to give extra care to their asthma management.