So, last week we got to make the trek down to Cincinnati Children’s to see the cardiologist – all the way down to the main campus, which is always a bit of a pain. The day we happened to go was one of those days when it was record breaking wind chills (although we might have broken that yesterday, haven’t heard for sure). Suffice it to say, it was COLD.
For sure 90° plus weather is the hardest on Em, but when it is hovering around zero and the wind chill is dangerous, that is rough on her too. She needs to bundle up but so easily gets overheated- by the time she has her layers all on and her coat and scarf and gloves, she is about ready to faint. And the cold hurts. And the temperature changes from bitter cold to room temperature and back again just wreaks havoc on her system. So, while winter can be a blessed break from humidity and heat, it is not without its issues.
Fortunately, our appointment was between the snow that came the previous night and light snow that came that evening. We saw some snow flakes on the way home but it largely held off until we got home.
As far as the appointment itself, well, it was underwhelming. Em got (had) to fill out a questionnaire on a tablet which always offends her. She didn’t want to be there in the first place and she maintains that she is there to be treated for her autonomic symptoms not depression or bullying or whatever they were looking for in the questions. I talked her down, but, have to admit a few of the questions were strangely worded. Not a hill worth dying on but she disagreed. So, she was just grumpy – not that I blame her!
We saw the nurse and, as usual, spent the most time with her. Only spent a few minutes with the doctor. Basically, he is leaving her meds the same, indefinitely. Meh. It would be nice if he was willing to tweak things to see if we could improve things, but I guess good enough is good enough. He wasn’t offended by Dr. Neilson prescribing the beta blocker, he just was doubtful of its effectiveness and said we could cut out the morning dose because it was pointless. We see him again in a year but can call if we need him and there is the possibility of making meds changes over the phone, so we wouldn’t have to make a special trip.
I just didn’t have the energy to really make an issue of it, so we just went on our merry way. The midodrine definitely seems to make a difference, although it definitely is not perfect. The propranolol seems to help a little (Neilson really thought it would help with the nighttime anxiety and adrenal surges) but she had a huge panic attack the other night, so we may need to look into tweaking that. I’ll be more comfortable dealing with Neilson about it anyway, so I guess that works out.
So, yeah, I am a little meh about the whole thing – but I never did have high expectations in this area so I am not terribly surprised. The best part of the day was getting to eat at Chick-Fil-A, a rare treat because there isn’t one close to us.
Our Life with Ehlers Danlos Syndrome 
Comments on: "Good Enough is Good Enough" (2)
I am curious, what reason did he give for the morning beta blocker being pointless?
I thought I would share some of my medications although I know each body is different, especially kids bodies. I am prescribed Propanolol too — 10mg 2x/day then 5-10mg as needed during the day based on my heart rate. I have a small dose of Xanax (.25mg) for days with excessive adrenal surges (as needed) but some doctors don’t like to prescribe it because it can be addictive.
Sorry it took me so long to answer- been a crazy month or so. I guess he just feels like the beta blocker really isn’t going to do much and didn’t really give an explanation about the morning dose. If I had to say, I think he was humoring us and Dr. Neilson by ‘allowing’ us to continue it at night. I think he would not even consider prescribing it himself because he does not see the point. Or at least, didn’t seem to for my daughter. And that is discouraging.
The adrenal surges are a huge issue for my daughter, yet no one seems to care or have a clue about how to help. So, we are still trying to figure that out. Right now, she takes 20 mg at night, 10 mg in the morning and could have taken another 10 in the afternoon, but we never added in that dose. It doesn’t seem to do a whole lot for her, but it does help some, I think and if she were to stop it, I think she would notice.