I feel like a horrible mother for even typing this post, but I have been struggling with this for a couple of weeks now and I need other opinions.
Addison is on Sildenafil (Viagra), a medication to help expand her blood vessels leading to her lungs to reduce the effects of her pulmonary hypertension.
She has been on this medication pretty much her whole life. We have faithfully filled the prescription and given it to her as told to once again...her whole life. (at $40 a bottle after insurance...this takes dedication to keep up with, believe me)
For most of her life, she has been critical- on oxygen with careful instructions to watch her breathing and stats. Now, she is no longer critical. She is off oxygen and her stats aren't even a question any more.
Her cardiologist told her that he wanted her to stay on the Sildenafil and just grow out of the dosage (which means that we're looking at continuing to give it to her another 9-12 months at the rate she is currently growing)
Here is my dilemma...and I hesitate to even share this next part.
A couple of weeks ago, when I was playing in Peter Pan and was crazy busy out of my mind...I called in her prescription refill (it takes 24 hours to fill only at one pharmacy in the state...sigh) and forgot to pick it up.
For the first time in her life, she went without the medicine at all....for a week.
I am ashamed to admit this. We have been so careful about this- including fighting pharmacists to get it on time so that she wouldn't even miss one dose.
During that week, Aaron, myself and Addison's PCA all noticed something.
Addison was more alert- she wanted to sit up- she was talking more- she was happier-she worked harder on her physical therapy-her appetite increased, she couldn't get enough of the solid foods.
I thought it was just me, but when I asked the PCA if she noticed anything weird about Addison's behavior the last few days, her observations mirrored mine exactly.
When Addison would have days of just wanting to lie in her crib and stare at her bumper pads for hours or would refuse to sit up even though I knew she could or would refuse to do certain therapy things- I blamed it on the Down syndrome.
I thought back through the last few months. She does her best sitting up/therapy work/talking/interacting with us at night- right before bed- right after her morning dose has worn off and she is about to get her night 2 ml of Sildenafil.
I am no medical professional (believe me), but my thought was that the medicine was somehow changing her personality- changing her desire to be upright. The only thing that the bottle says is - "May cause DIZZINESS" in large cap letters, just like that.
So this medicine that is helping her breathe is causing her to be miserable the rest of the time until it wears off?
I didn't even think to question the doctor's choice of the medicine. He prescribed it- we gave it to her.
As far as her breathing during the week without the medicine, it was still really great for the first half of the week and then I did notice a slight change towards the end of the week- so the medicine is still obviously helping her somewhat. Although, during the Cath, they labeled her current Pulmonary Hypertension level as mild.
How can I keep giving her a medication that is holding her back physically and emotionally? How can I keep giving it to her now knowing that it is causing her to be extremely DIZZY? She can't tell me that she is dizzy, but now as I look at her responses to different activities, especially right after she gets the medication, I know realize that she has been telling me this for MONTHS and I haven't been listening or watching.
I'm afraid to call her cardiologist and 1. admit that she went a week without the medicine and 2. ask if we can give her a smaller dose or whatever because I known what they'll say. (You don't work with a doctor for 9 months without being able to anticipate an answer like that) He is extremely conservative and afraid to change something that seems to be working (why do you think that we were on oxygen for SOOOOO long even after I knew that she didn't need it any more)
My thoughts are maybe I should just give her her dose at night and let her sleep off the dizziness but not give her any at day so that she can feel OK....but it scares me to do something differently than we were told to do.
I am Addison's advocate. What does that mean in this situation?
HELP! What would you do? Anybody else have a baby on Sildenafil?