February 23, 2016

Bone Density Scan

The Bone Density Scan doesn't even need it's own blog post, but based on our experience today, I felt like it did. 

So, at our last CF appointment, our GI doctor said he would need a bone age study to rule out growth problems and osteopenia. I didn't realize until today that he was actually having a bone density scan done instead. The orders to do the bone age study may be there, but I am not sure. 

Anyhow, the nurse/technician was nice enough. She was trying to explain to Azer what she was going to do and why. He was having a sort of teenager-ish time, and was kind of giving her the "I really don't care how and why, let's just get this over with" look. So, I mentioned to him that we're getting this done so we can maybe find out why you're not growing very fast. The technician hurriedly explained to me that this is not what this test is for, and that it was to find out how dense his bones are. From everything I've read before, I assumed the bone density tests would start when he was 18, so I mentioned that. Her responses felt very argumentative, so I just stopped talking. 

She first scanned what looked like his spine. She then had him sit up, and place his right arm on the table to scan it. When she was about to start scanning his right hand, she asked if he was right handed. I said that I was sorry, he is left handed in baseball, and most other things except for writing. I told her when he was about 4 years old (at that point I had no idea he could possibly be left handed) I taught him to write right handed. It wasn't until later when we began to play catch together that I realized he was left handed. By then, he was already pretty good at writing with his right hand, so it stuck. (I realized recently how left-dominate he is when we found out he is left eye dominate as well). She then told me that it can be very damaging for brain development to force someone to write with the less dominate hand. By now, I just decided to stop defending myself, and just looked around the room while the computer "measured" his bone density. 

It was a pretty quick appointment, so he was able to go back to school for the rest of the day. 

This evening, as I was going over today's visit in my head, I texted Azer. The screenshot sums it up lol. 

February 13, 2016


The antibiotic called Bactrim, that Azer has been on has been making him vomit, usually once a day. Last week, he vomited so hard, his nose started to bleed. Last night, we started the antibiotic Cipro. The Bactrim had to be given three times a day, the Cipro twice a day, so he ended up having to take them at the same time this morning. On our way to his baseball tournament, he threw up everything, formula, antacids, antibiotics... I knew this wasn't going to work.

So, I called the on-call doctor, and they are taking him off the Bactrim and Cipro, and putting him on Levaquin. The doctor said it treats all the of bacteria he is culturing including the Pseudomonas, which is awesome. I am glad he only needs to be on one oral antibiotic.

Azer did say that the inhaled Tobi is making him feel a little icky, like the beginning of a cold feeling. Hopefully that feeling won't last through the whole month.

So, basically, the Tobi Podhaler has these four capsules. He has to inhale 4 of them twice a day.

The little device in his hand pierces the capsule and then he has to inhale the powder (weird right) and hold it for 5 seconds. He says the urge to cough it out immediately makes it hard to hold his breath, but he manages.

He did great pitching today, and pitched into the 4th inning!

February 8, 2016


Well, the antibiotic Azer has been on has been causing some vomiting, but nothing too terrible. He initially said the Bactrim was helping his lungs, but a few days into it, he said his lungs felt tight. Unfortunately, the reason for this is that his culture came back, and it was positive for Pseudomonas. He hasn't cultured this since 2013.

Pseudomonas Aeruginosa (or PA), can be a very aggressive bacteria in CF. It can cause further lung damage and can be difficult to eradicate. PA is one of the reasons for boiling the nebulizer cups, as it can survive normal washing. They said he has 2 colonies of it right now. Apparently, we can think of the colonies of pseudomonas like little apartments of bacteria, each one living in a different complex. How they can figure that out from a sputum culture, I have no idea.

We will treat the Pseudo using the Tobi Podhaler again. This worked out very well last time. The normal treatment for pseudomonas is inhaled Tobramycin, or Tobi, which is an antibiotic which is inhaled. This is inhaled though the nebulizer and usually takes about 45 minutes. With the Tobi Podhaler, which only takes about 6 minutes to inhale the powdered antibiotic.

On top of the Tobi, he is going to have to do Cipro in addition to finishing his course of Bactrim. The PA has to be treated aggressively. I hope we can control or eradicate it as quickly as we did last time!

February 2, 2016


Had another fairly good CF clinic appointment. He is now 100 lbs! Triple digits! The formula is working great, and he is absorbing most of it. He isn't eating a whole lot, but they aren't really concerned with that right now since our goal at the moment is to get him growing taller. Which isn't really happening. In a few months, he's only grown a tiny amount. We have not heard back from the endocrinologist since the last appointment, so our GI doctor is going to put in another referral. He is going to need an X-ray for bone age to rule out any osteopenia. While their at it, they will do an X-ray to make sure his scoliosis hasn't progressed. We are facing a real possibility of growth hormones, which can put him at an increased risk of CF related diabetes, so the endocrinologist will need to evaluate the risk versus the benefit of getting him to grow. The GI doctor said with the X-rays and all these months of aggressively gaining weight without growing will provide evidence to the endocrinologist that we have tried to get his body to grow on it's own. It is not clear why children with CF sometimes do not grow as they should, even with above optimum nutrition

Azer's Mic-key button has been bothering him a great deal lately. Apparently within a few months, he outgrew his last size, so an ostomy nurse came and put in a larger size. He said it felt so much better after. 

The erythromycin has been working very well to control his feelings of bloating and fullness, although it doesn't seem to be actually making the stomach empty faster. The CF doctor wants us to discontinue azithromycin, since they both are in the same class of drug, and he has not cultured pseudomonas since 2013. She mentioned that if he does culture Pseudo again, we can put him back on azithromycin at that time. Some studies have shown that azithromycin can prevent pseudomonas from growing a biofilm, which is like a shield that it can grow to prevent antibiotics from killing it.

During spring break, our GI doctor would like us to back the bethanechol to twice a day instead of with every meal. 

We all had a virus come through the household about a week ago, and as can often happen with Azer, the virus left, but the congestion in his lungs can stay and get worse in a short time. His cough was concerning to her, so she wants to put him on an oral antibiotic for a few weeks to help his lungs clear the junk out. His Fev1 was 86%, which both the doctor and I agreed wasn't bad, but we know he can blow higher.

Our CF clinic is beginning to test CF patients 12 years and older for depression and anxiety, which will be confidential between him and the doctors. It is good that they have started this early, so if he has issues later in life, he will hopefully feel confident enough to share any of those feelings with them before they become issues.