August 23, 2019
It has been about a year since we've seen the Endocrinologist. She would like to see him every 4 months from now on. In the past year, he hasn't grown as much as she would expect. They ran some blood tests that will tell her if his growth hormone level is where it should be. She expects that it will need to be increased. She also ordered a bone age scan, to see how many years left he will probably grow. She mentioned he may have not grown that well this year based on how many times he has gotten sick and/or hospitalized.
He put on about a pound from last week. The Endocrinologist said today he weighed about the same as he did last year when she saw him.
We discussed the possibility of continuing growth hormones into adulthood for long term health and to also keep his muscle mass stable. She said when adults are deficient in growth hormones, they can have high cholesterol and other issues. We also discussed how high his glucose tests can be before it's time to start being concerned. His last OGGT was a bit higher than he normally is, but it isn't concerning at this point.
Azer also saw his PT today, who did sort of an out of the box test that is meant for athletes instead of CF patients. He did exceptionally well.
August 16, 2019
|This year is Sophomore year!|
So, the day after his clinic visit last week, Azer started to sound congested. It seemed to get worse through this week. His culture from last week came through, and the Steno wasn't present, but a rare growth of Aspergillus was there. Yesterday, he and I came down with a mild virus, which didn't cause many symptoms and seemed to only last a day. However, he ended up coughing hard all night long. He said at school, he was trying to breathe shallow so he didn't end up having a coughing fit in the middle of class. He was exhausted this morning, and sounded even worse. He emailed the clinic, and we started heading in that direction, not knowing whether they could see us in clinic or not. Luckily, they had an opening in the afternoon, which was worth waiting for.
He lost 3 pounds in one week. He has been a little more active since school started, but has been eating fairly well. He had some difficulty doing his PFT today, as he was holding back coughing. He was only a point down from last week, but several from a few weeks ago.
The doctor is still trying to determine if his cough is coming back from not being on the Ceftaz, if it's from the fungus, which may or may not be colonized, or just allergies. She listened to his lungs, heard no wheezing and said they sounded so good, that she didn't see the need to order an X-ray, and she didn't feel the need for him to be on steroids right now. She looked in his nose and saw some polyps and the evidence of a lot of post nasal drip. She wondered if since the Dupixet is helping his sinuses so much, if the inflammation going down has allowed other junk that has been stuck up there to come out. Either way, he is going to try some oral antibiotics for a few weeks to see if he starts feeling better. If he's not much better, we might start to treat the fungus. In times past, it has taken months and months to treat him for ABPA and aspergillus because they were waiting for his IGE to get lower. It is almost always high whether or not he is culturing fungus. The doctor said if we have to treat it, she will treat him until his symptoms improve.
August 7, 2019
Azer gained three pounds from last clinic visit. He really struggled and worked hard to get a good PFT today. It was a few points down from last month, and he was really frustrated about it. He has been running and feeling pretty good, but the high heat and humidity has been very rough on his allergies.
Last week, we received Duplixant, a new shot that helps treat the inflammation of asthma. The first dose is two shots, and the needle was intimidating looking, but he was brave and gave both to himself. He asked the doctor how soon he might see any improvements, as he still feels like he's having lung issues due to allergies. It may take a few more dosages, but he has already stopped having sinus headaches, which the doctor said by itself may be worth it. She listened to his lungs, and said that almost every year around this time, Azer's lungs sound wheezy, but that he sounded clear today. So, she thinks the shot may be helping already.
At last clinic, his culture came back clear of the Steno. If this one comes back with the Steno again, and he's not feeling that great, he will start the Ceftazadime again, and continue to cycle it every other month. Hopefully, his lungs will remain clear for the start of school!