So, yes my little guy has sickle cell disease. We knew this within 3 months of his birth. The newborn screening is an essential tool that identifies certain conditions that aren’t otherwise apparent at birth. Well, after a bite of a peanut butter cookie and after a lick of the spoon that his grandmother used to mix her cake batter, we found out that he had food allergies (at two separate events). Yes, food allergies. Peanuts and Eggs (specifically raw eggs) caused him to have anaphylaxis reactions. At both events, his lips, tongue and throat began to swell and he struggled to breath. There was excessive coughing and he was very scared. So were we. Fortunately, a LOT of Benadryl was used to slow down and eventually stop the reaction. We were lucky. He made it. I had know idea, at the time, that he could have easily died.
He regularly sees his allergist and an EpiPen is with him wherever he goes. He also sees a gastroenterologist. Why, you ask? Well, he also has been diagnosed with Eosinophilic Esophagitis. What is that? In simple terms, its a condition that due to food allergies, his body reacts by increasing the amount of white blood cells inside of his esophagus building up a lining of the cells that cause inflammation. It restricts his swallowing and he chokes on food. We do not know exactly which food/protein is responsible for this but he is currently on an elimination diet and has been for the past 3 years.
Ok. We’ve learned to deal with that. But hold on, it’s a little more complicated.
He has also been diagnosed with asthma. Yes, asthma. As if it isn’t bad enough that his blood doesn’t carry the necessary amount of oxygen throughout his body at times, this condition just restricts the little oxygen that his body has to function. Great. (sarcasm)
Ok. We’ve learned to deal with that, as well.
I honestly believe that if I make sure he sees his doctors regularly, take his meds as prescribed, I make sure he drinks, eat and have enough physical activity and of course all along with prayer, we got this. All of this.
There are symptoms of the EE that can sometime make it hard to discern if its sickle cell pain or EE pain. This include stomach pain which can be a result of both. It takes doctor conducted exams, x-rays or ultrasounds sometimes to determine the reason of the pain and then it could just be a “normal” stomach pain due to a “normal” reason (constipation, nervousness, etc.). Of course we have to be sure any breathing difficulty is either associated with the asthma or it also could be a sickle cell issue. He’s had Acute Chest Syndrome before which is basically a blockage in his lungs. This is one of the main reasons of death in a sickle cell patient.
This is not a post to complain. Let’s just say, this is just a post to set the scene so that you can get a better picture of what we have to deal with. We give God the thanks for allowing us to always be ready to deal with the next challenge, for giving us the desire to learn as much as we can so that we can be good strong advocates for our son. He deserves nothing less.
So yes, it’s a little complicated but with God, our family and our friends….we got this.