December 15, 2017

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!

December 12, 2017

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!

November 29, 2017

Physical Therapy

Azer is coming to an end of his active treatment phase with the Physical Therapist. She has taught him how to do manage different pains in his body with exercises and stretches.

Over the past few months, we have allowed Azer to be fully independent with his stretches and exercises. As can be expected, he is not 100% compliant with them. The PT took his measurements again yesterday, and found that his form has regressed. She stressed to him that if he continues down this path, he will develop what's called "Barrel Chest". This causes the rib cage to be partially expanded all the time, and he won't be able to exhale completely. This will be permanent, and she said when she treats older patients with CF, there is nothing she can do for this. This is a crucial time for him to get his form back, especially now that he will begin growth hormones soon.

Because we feel this is so important right now in his life, he will be doing his stretches and exercises in front of us every night.  The Physical Therapist added a few more exercises that he can do daily that will improve his core strength as well as improve his Scapular form.

The Physical Therapist also shared that she has been advocating for CF patients to the insurance companies, Medicaid, and also to parents. She has been trying very hard to teach people that PT is as important to CF patients as is regular doctor appointments. If kids with CF's form and posture is not corrected at a young age, it is possible for them to lose lung function and require a lung transplant sooner than later. Doing the right exercises in the right way can also build bone density and can possibly reverse bone density loss. 

November 14, 2017

MRI for Growth Hormones

One of the requirements we had to meet before starting growth hormones was to get a brain MRI to make sure there isn't a tumor on Azer's pituitary gland.

He wasn't a big fan of the over-sized gown. 
It was a day where is lungs sounded a bit junky. Luckily, he was able to lay still for the majority of the scan, and they allowed him to cough in between the frequency scans. I was able to sit near him where he could see me, to try to relieve the claustrophobic feeling. When it was over, he sat up and he said he felt dizzy. The technician said this was from the magnetic field from the MRI. The feeling passed quickly.

We had a meeting a few hours later, so there as no point in driving home. To help pass the time, Azer decided to stand near the glass windows where you can see people on the lower floors, and "dab". He was seriously delighted when a man dabbed back!

The results of the MRI came in, and the doctor reviewed it. It shows that his pituitary gland is smaller than normal. The doctor isn't concerned about this (we have questions), and has given the go-ahead for growth hormones, pending insurance approval!

October 31, 2017

Physical Therapy Visit

It has been about a month since his last PT session, so Azer had a few things to work on today. (I snitch on Azer and tell her what he has and has not been doing.)  As punishment, for extra fun, he did plenty of core exercises and some knee exercises for his Osgood-Schlatter Disease which has been bothering him.

Since it is Halloween, they decided to do their planks wearing, what else, but Poo Emoji hats! Lol

This last pic is from a few months ago, but I think it demonstrates his therapy sessions the best haha. She does a fantastic job motivating him, which is a job in itself to motivate a teenager!