Influenza

For a few days last week, Azer complained of a dry, raw feeling throat. We figured he might have caught a virus. On Christmas day, I was hit hard by what felt like the flu, and Azer started to feel awful. After going to the doctor and discovering I had the flu, I called the CF clinic to ask for guidance. We got Azer swabbed for a confirmation that he did indeed have the flu as well. He has been started on Tamiflu and increased treatments. He is feeling a lot better, but his lungs are full. We are all working hard to try to keep them clear. If anything, this has made me grateful for the years that the flu shot does work!

ENT

It's been about 6 months since Azer's last appointment with ENT. He has lost most of his sense of smell, and can only smell strong smells. It's also been nearly exactly a year since his surgery to remove polpys.

Whenever Azer does his nasal rinses with the Netipot squirt bottle, he says it is almost painful, as it feels like the water stays up in his sinuses instead of draining out.

The ENT doctor saw some polyps and edema. It was very swollen and irritated looking as well. The doctor said it was up to us to make the decision about the polyps surgery. He reminded us that it will be a regular, periodic thing. Azer felt like at this point, he wasn't ready to have surgery again, and said that being able to smell wasn't that important at the moment. Unfortunately, by waiting, it will only increase the number of polyps and may become painful at some point. 

The doctor said to wait 6 weeks and see how he feels about surgery then. In the mean time, Azer has to be vigilant with his nasal rinses and also needs to restart Pulmicort drops in each nostril. Hopefully this will cut down on the inflammation. 

Discharged from Physical Therapy

After being successfully treated for several injuries and painful areas, we have been discharged from seeing the Physical therapist every few weeks. We now will only see her at the CF clinic, and she will continue to monitor Azer's form and strength. 

As it was his last day for her to work with him, she worked him extra hard and gave us several more exercises that we can do at home. We now have a large arsenal of exercises to chose from everyday. 

Endocrinology Visit

We've had this appointment scheduled for a while, so there wasn't much that the doctor could do or tell us after only being on Growth Hormones for a few days.

While we were waiting to see the doctor, our Physical Therapist brought in some exercise mats and weights so Azer could do exercises while we waited (she didn't want him to get bored, haha!)

He was thrilled....  not really. The good news is his scapulars are starting to come together again, and his form is improving (again). We really have to stay on top of this now that he's on GH.

While we didn't go over much with the doctor, she did answer some questions both Azer and I had. He has to have his Scoliosis checked every 4 months, to make sure it isn't progressing. The doctor mentioned this is especially important given that he has CF. Scoliosis can impair the ability to breath in some cases.

If, after he is done growing, he is tested and still shows to be GH deficient, he might need to be on a low dosage of GH for the rest of his life, as studies have shown GH to be necessary for cardiovascular health, among other things.

I asked about the results of his MRI, showing that his Pituitary Gland was small. The doctor said other than having a traumatic head injury (he hasn't that I know of) the only other reason why it might be like this was he was born that way. She doesn't know why he's been GH sufficient up until puberty started. GH are most effective when started as early as possible, as when puberty starts, the window starts closing. But, she mentioned he should have a few years left to grow.

Azer asked her about the possibility of developing CFRD (Cystic Fibrosis Related Diabetes). She said that even in people without CF who are borderline diabetics, when taking GH, it often does push them into having full blown diabetes. She said that if he does develop CFRD, it's our choice to continue with GH along with insulin or not. Sometimes, when stopping GH, diabetes can go away, or sometimes it's there for life. Even without GH, he has a 60% chance of developing CFRD in his lifetime. The doctor said we would keep a closer eye on his blood sugar than before. So, we shall see!

Growth Hormone Class

The Growth Hormone class was about two hours long. A nurse went over all the side effects, what to expect, and when and where to inject the hormone. She also mentioned some insurance companies don't cover growth hormones! (Something to keep an eye on in the future).

She allowed Azer and I to practice putting the needle on the pen, injecting some "fake skin", and get a feel for how the injection pen works. Azer did very well, and was soon ready to try his first injection. He did great, and did it all himself. The needle is pretty small and he said it hardly hurt at all.

Of course, anything that is added to his CF life causes change. This time, it includes less fridge space, and a sharps container. We should watch for side effects, the most common would be a bad headache. Apparently, sometimes the pituitary gland can swell and cause pain when growth hormones are first started, or the dosage has increased. In this case, we would have to stop the injects, and then at a later time, start them in small dosages. We also have to keep track of where the injections are each day, what days they are given!

We are hoping for great results and little to no side effects!