By Michelle Dilley
Let me start off by saying no one knows your child better than you, not a single doctor or specialist. If you don’t feel right about the care that your child is receiving, change doctors or specialists. I’ve done this at least 7 times simply with pediatricians alone. Advocate for your child! No one else will…trust me…It could save your child’s life!
Dominic has always been sick more than not. He quit breathing on me when he was an infant, and they said it was due to a febrile seizure. He has always had a cough that has sounded like croup since he was an infant. They diagnosed him with croup repeatedly the first couple years of his life. We almost always had antibiotics in the refrigerator. Around the age of 4, almost 5, he was diagnosed with asthma and was put on inhaled steroids. He was still getting sick a lot and so we were changing doctors quite a bit and it was causing a lot of different opinions and led us in a lot of different directions along the way. One specialist would say he had asthma… the next would say he didn’t…the next would say he had acid reflux without asthma, so we’d treat that with no changes what so ever, and it just became a vicious cycle of us getting nowhere to get our son feeling better. Things only got worse. From September of 2016 through February of 2017 our son had the stomach flu alone at least 7 times, he was extremely ill. This wasn’t counting the respiratory infections non stop.
In February I woke up to him being on the floor outside of my bedroom moaning and not able to sit up or talk. I can’t even begin to describe how terrifying it was finding my child in that state. My son had hit his head at school the previous day and I already had an appointment to have him evaluated for this the morning I found my son in this condition. I thought it was possibly a concussion when I saw him like this. I had to dress him by myself as he was totally incapacitated, he couldn’t do a thing. I had to carry my 7 year old boy to the car and into the doctor’s office. His pediatrician thought he had appendicitis and sent us to the local ER right away and even gave me a hug as she was very concerned. Dominic couldn’t even talk or sit up at this point either. I took him to the local ER and they started IV fluids and did some blood draws. When the results came back, they said they had already called an ambulance to get him to the children’s hospital as soon as possible. They thought he had appendicitis as well.
Dominic slept the entire way to the hospital to the city. When we arrived and he woke up, he was starting to feel a bit better. It was due to all the fluids. They did scans of his stomach right away and when they came back they came in his room and said that the scans were back and he was simply constipated. I told them that this couldn’t be all it was, that they didn’t see our son that morning. He couldn’t move, talk, or respond in any way. He was extremely ill, and they wouldn’t listen to me. They told me to take the good news and go home.
Dominic’s pediatrician knew something was seriously wrong but was at a loss so she sent us for a second opinion with a pediatrician/diagnostic specialist. That specialist started to figure a few abnormalities out, and sent us to an immunologist. When we went to see the immunologist, she didn’t want to listen to us and was trying to push us out of the office. I didn’t let her! I kept talking and sharing Dominic’s history. When I got to the day in February a light bulb went off in her head, and she said “I’m going to run a cortisol test”. I said “ok”. I didn’t even know what it was, but I was thankful that she was doing something more.
She called me at 9:30 that night and told me the lab alerted her and she had to alert me that his cortisol and ACTH levels were both non existent. I asked her what this meant and she told me it could be life threatening, and that we needed to see a pediatric endocrinologist as soon as possible. When I found out what we were facing, which was adrenal insufficiency, I realized that what our son dealt with back in February, was an adrenal crisis!!! We saw an endocrinologist 2 days later, and had a stim test 2 days after that. They couldn’t get his body to create anything at all.
They didn’t prescribe him any medication. I wish I would have know then, what I know now! Shortly after that, he had another adrenal crisis. They wanted him taken by helicopter to the children’s hospital, but the helicopter wouldn’t fly due to a storm, so they took him by ambulance. They admitted him and wanted to discharge him the following day without changing a thing!! They weren’t going to prescribe him any life saving medications! I told them that I had been doing a ton of research and that if they were sure that this was all due to the inhaled steroids, then why not cut those in half, and start him on the more natural form of Hydrocortisone? There was a team of 3 endocrinologists with us at the time. The one endocrinologist (I later found out he was a first year fellow) was furious and refused to agree to this. The senior endocrinologist said ” No, Let’s do that. “. I was so thankful. They only started him on the smallest dose, but at least they did something. They also gave us the emergency injection, and enough Hydrocortisone for stress dosing.
Dominic was still very ill and having a crisis almost daily. He would get a migraine, and the crisis would hit very fast. I had to push to get his dose increased to twice a day, and no change, so up to 3 times a day. There has been a lot more involved since all of this, but we are now at an ever higher dose in the morning of 3.75 mg, then 2.5 mg in the afternoon, and 2.5 mg at night. We have a ways to go and a lot of appointments ahead. My biggest hope is that others can take away from our story, DON’T EVER STOP FIGHTING AND ADVOCATING FOR YOUR CHILD! Educate yourself as much as you can!