Our son is almost eight years old, but had his first asthma attack when he was ten months old. We had no idea that he had asthma until he was three years old. Asthma runs in both his dads family and mine, but neither of us put it together.
I want to explain his asthma attacks, because they seem very different to me, maybe they are not and someone on here knows what I am talking about.
First, since he was a baby, winter has been awful for him. He gets a flare up roughly every two weeks, and they last for two weeks. Each day his asthma gets worse and worse, regardless of the medications he he takes, until something in his body makes it stop, and it goes away just about as quick as it came on, however it take a well over a week, all winter long. Asthma used to only really bother him in the winter, but as the years go on, his asthma is starting to be a problem in the warmer months as well. We did not realize this until I got his attendance records from school. His flare ups in the warmer months last 3 or 4 days, and the winter flare ups last at the very least 10 days.
He's had a complete PFT with aradol challenge, he had a 19% change. His lung function was at 82% which I understand is good, but even with the good numbers his asthma is so bad. He is seeing the best pulmonologist in the city, so they say. We have been with the new Dr for a year now, and about a month ago he was diagnosed with severe refractory asthma. He has been through every medication he can take for asthma. A couple of the medications caused him to have seizures, so those two meds are not options. 3 allergy shots a week. He was also using Verimyst but due to nose bleeds we have stopped using that.
His body seems resistant to the medications, all of them. All the pills inhalers and even allergy shots. His eyes are puffy with brown circles under his eyes. We hate that he takes so much medication and still gets sick. He also uses a peak flow meter and his normal best is 250, I noticed in November that is was dropping down to the low 200's and in December, he had a 10 day flare up, with his peak flow meter in the low 100's. He got better right before Christmas, and we had a relaxing Holiday. He went back to school after winter break and in two days he was sick again. His Dr said he needs to come out of school and live his life indoors, so that's where we are at now. He has a teacher come visit him and teach him 3 times a week at our home. Our life is so restrained at this point. We are concerned that his lungs will become permanently damaged. It is my understanding that the worse the asthma is, the less chance of "outgrowing" it, and the higher risk he is at for lung damage. He will soon undergo a VCD test to rule that out, but from what I have read, he does not have VCD. I believe the Doc will have him get a biopsy eventually, it's already been talked about. but no final decision has been made as of now. His peak flow is starting to drop once again even after being indoors for over a month now, no school, no playing outside...nothing. Just to go to the Dr is all he goes out. We did have him outside yesterday for about 5 minutes but that's it. I am so worried he's going to get bad sick again. Does anyone on here have a diagnosis of severe refractory asthma, and if so, do you have any advise for us?