Black box warnings and my child

As I mentioned on Friday Alorah stayed home from school. She was complaining of not feeling well and a sore throat but I knew that there was something else going on as well, I just didn't know what. I let her stay home. I was dealing with albuterol possesssed asthma dude so I didn't have time to sit down and talk to her that morning. After it became clear that Vance needed to be seen I dropped Alorah with my mom and told her that I knew she wasn't really 'sick' and that I thought something was wrong at school, so she didn't need to tend to her and I would deal with her later. My mom did end up talking to her-but I'll get into that later because it has nothing to do with all of this. She had that dry and tight asthma cough that morning so she was on her albuterol. I thought perhaps she may have gotten a sore throat that was triggering her asthma.
Fast forward through the weekend, she needed her neb or puffer every morning, again the asthma cough had her hacking. Then the school called and she needed it for PE. Yesterday morning I called the doctor. She was put on Flovent 110mcg in September after she had her 3rd major asthma attack in as many weeks and almost landed in the hospital. I was very concerned about the coughing but not only that her peak flow's. She has finally (YAY!) started to use it. Her personal best is 150, which I had no idea if that was normal or not-it was just what she has blown) and Tues and Weds her peak flows where down to 100-120. So I knew her lungs weren't functioning where they should be and it got me very worried. I picked her up from school, dropped Faith and Vance off, and took her to see Tom. Her pulse-ox was 94 (now, I know they say that is good but I've seen her at 99 and 100% so *I* don't really like that number-that number means that trouble could be lurking). She weighs 46.8 pounds. She is excited to see Dr. Tom, she adores him. Who wouldn't? The man is hilarious and the best ped. I have ever met-and I've fired quite a few before him! She has seen him since she was 2 1/2 and he has always been able to produce a musical flow of giggles from deep within her-it's awesome. He comes in to talk about everything, she wasn't using her peak flow in September so we went over those numbers (even though I didn't know what they meant), he decided to have her blow in the office-she was at 120. He didn't like that, he told me kids her age and height should blow at 215-220. Okay, we are way below that. So, when your child's lung function ON a maintenance med is way below what it should be and they are having worsening asthma this is a bad thing. I figured we were in for some kind of med change. I did not, however, think we would be in for a black box med change. He excused himself and came back with an Advair sample to show Alorah how she would use it and what it is. This med is a Long-acting beta₂-adrenergic agonists. Albuterol is a short-acting beta₂-adrenergic agonists. This medication is the same exact inhaled corticosteroid as flovent but it adds the drug Serevent. Since she was already on 110mcg of the flovent and worsening he did not want to put her on the first dosage of Advair-100/50 (100 of flovent 50 of serevent) he decided to put her on the 2nd dose up from that 250/50. This is his last med change. It should work within a week and if it does not I have to call and she is going to have to see a Peds. Pulminologist. Now the black box issue. Her asthma is worsening. She has failed pulmicort and now she has failed flovent. So, the next step is this med. Doctors won't prescribe it for people who haven't failed inhaled corticosteroids. They use a step program. Step one is to just use your rescue med (this is what we had been doing for the summers when she usually was flare-free). Step two is rescue med plus an inhaled corticosteroid. Step 3 is your rescue med and a inhaled corticosteroid with a long-acting beta₂-adrenergic agonists. That is the step we are on. There are 5 steps.
The risks. It carries a black box warning because 13 out of 13,000 patients in a study died. Most of them with severe asthma, you have to have pretty severe asthma to even get put on this med. There is a higher risk of hospitalization if you do have an attack while on the med. There is risk of a decrease in immunity against illness. There is risk of growth delay. Now, all of those are, to a point, a risk if we don't step up her meds. She will almost certainly end up in the hospital if we don't do something. Growth can be delayed by asthma. Illness-well if we keep having to put her on oral steroids she is going to have an even higher risk of that. There are, of course, other side effects but those are the bold ones in my mind. So, the big picture is this. Her asthma is getting worse. She failed two other inhaled cortiosteroids. So, this is the next step. It doesn't come without risk, but neither does not having her take it. As a parent, of course, it weighs on me. I don't want her to need this. However, when your child has coughed so hard and so much that they've actually turned purple right in front of you, it changes things. You become a lot more open with treatment options when your child has had 3 back-to-back severe attacks.
Hopefully we will be able to step down. It won't be for awhile. This summer she will absolutely not be going off of her maintenece med as we have in the past. There is just no way. I'm not sure what the protocal is to stepping back down. I still need to set her up for allergy testing, hopefully that will help us pinpoint it but it may not. Her asthma seems to have more to do with scaring from RSV then allergies, and we have her on clairitin daily as it is.

It's been a long few months with asthma. I am praying that the next few are easier. For all of us!
A very good informational resource I found today can be found here, and
Here is a link that I found helpful today, it is information by Dr. Greene
Asthma Mom has a good post about it here.