As a nurse, but most importantly, as a parent, I have never been so frustrated in my life. I have two kids with ADHD who NEED medication to be at their best for school and day to day activities. Managing their healthcare has been one of the most difficult tasks I have faced yet as their mother.
It truly amazes me, how those responsible for managing their care, treat their condition like it’s a common cold. It has been challenging to say the least, finding a doctor who can just actually LISTEN to what I’m telling them. It’s like I’m speaking to a brick wall. Let me give you the scenario:
Over the summer, my daughter was taking Daytrana. Which worked PERFECTLY in the summer when I could give it to her mid-day. When school started up, I noticed her becoming more oppositional, not listening, not following directions, and most importantly her grades sliding. After speaking with her teacher, speaking with her, and having a full two days to physically observe her, I realized it was no longer working (duh). Once school started, I had began putting it on at 6:30-45. Four days of the week, her day is over at 8:30pm. Sooooo, that little patch effectiveness was LOOOONG GONE.
I get this “aha!” moment and send a message, requesting suggestions for managing her ADHD better. I learn her PNP (pediatric nurse practitioner) is away on vacation and they rerouted my messages to one of the pediatricians. She recommended 2 patches a day. After talking to my pharmacy, insurance company and my physical observations of my child, I immediately let her know. I did not agree with this for the following reasons.
1. The patch ISNT WORKING!!
2. My insurance said they won’t cover it. 🙄
3. Even if they did after going through the prior authorization process, I would have to spend $180 a month on patches (her and my son are on it and having the same problem). 😳
Well let me tell you, this doctor comes back and tell me, that it is too difficult to handle my daughter medications through the phone/email and I’m just going to have to wait (3+weeks) for her FNP to come back and resolve it. 😡
You talking about someone FURIOUS?! I felt like she just washed her hands of her and just left her to suffer for the next several weeks in the meantime! All she had to say was, “Could you please schedule an appointment so I can better understand the problems, to better help her?”
So we had Vyvanse 20mg that my daughter did not want to try, but out of desperation, she took it anyway. She came home and said she had a great day in school! The only problem, by the time she got to gymnastics, it was 💯 worn off! She was a mess in class, so much so, her coach put her out the gym because she could not focus!
Knowing her PNP is retiring in 2 months anyway, I go on and make the switch to a different office to get her a new provider and seen quicker. They bring us in the next day, everything seems to be cool. I had to explain everything to the medical student, who then relays it to the attending, and she comes back and offer her suggestions. She proposed we change her Vyvanse dose to 30mg. 😳🙄. I kindly remind her the 20mg is perfect. No side effects with desired outcomes, and it’s the afternoon that is the concern and problem. She then suggest leaving Vyvanse at 20mg and adding Adderal 5mg in the evening. (Finally) is what I’m saying in my head.
So I get the medicine that day to give it to her to se if it’s effective for her afternoon activities. It worked briefly, but would’ve been worn off 2 hours before she was done with gymnastics. I give it the weekend, to see if it improves, and it didn’t. Call the office on Monday to report it’s not working and we are back at square A 😔. After talking to the nurse, who talks to the doctor, who then talks to me, who then talks to the doctor, who then talks to me 🙄, I’m told to wait a week to see if it works 😳. I asked the nurse to have to doctor call me because, she’s not understanding what I’m saying. My daughter is not safe in gymnastics if she is unable to focus and pay attention. 24 hours later, nothing.
So I did what we are not supposed to due and gave her 7.5mg in the afternoon ANYWAY, and guess what, IT WORKED. I mean, last I checked, it does not take a week for a stimulant medication to work. While we are playing this “waiting game”, my child is SUFFERING. I wonder if I told her, my daughter’s albuterol isn’t working and she can’t breath, would she tell me to wait a week. Or, the blood pressure pill still had her blood pressure 180/90, would they say wait another week. I mean WHY IS IT OK, that her mental health has to WAIT IT OUT, when there is a FIX?! Especially since the type of medication she takes is not a waiting game type of medication. It’s either going to be effective or not effective IMMEDIATELY. It don’t take a WEEK to figure that out.
So here it is 6 days later…I’m curious to see how long it takes the doctor to do what should’ve been done on Monday?!
Please share your stories so I’m not in this boat alone!