Partnering with your doctor

Amy:

It took me a few times, but now I’m that hospital mom momma bear. …After the lab techs come up, and they poke her twice…I’m the mom that’s not afraid to ask for the anesthesiologist because…if they waste 6 different poke sites, just trying to start one IV, we’re gonna be in trouble for that whole hospitalization.

And I had had different experiences with doctors and hospitals, so I knew right away that if you walk in and you act like you own the meeting, you own the meeting. And that’s what I did.

You have to be aware of what’s going on. And you know your child best.

David:

Thank God for doctors.

…They’re trying to do their best to serve you… So you have to treat them well. But at the same time you have to be an advocate when you present to a, ah, an emergency room or a medical situation with your child.

You won't get it from yelling. Don’t do anything like that. Just persistently be an advocate for your child.

You have to do it as a parent, and we’ve been teaching our son, to be his own advocate.

Do it sternly, firmly, consistently. Do not back down. If you do not get results, find somewhere where you can.

When we first got Emmy’s diagnosis, I think I still was a little bit in disbelief. I wasn’t really sure that it was real. Maybe hoping that it wasn’t.

I had all the normal questions: What does this mean for her? Is this something she’ll grow out of? How long of a life expectancy can we expect for her? Will she live a normal life? Is she gonna develop normally? What does this mean? As things settled in, I remember feeling very overwhelmed.

How are we gonna do this?

We were first introduced to RAVICTI in a doctor’s appointment. I think Emmy was maybe 3 months old and we were told it was an option. It was still in the trial period. But after learning more about it, it sounded like a really great option.

When Emmy was 7 months old, we signed her up to be in the trial. Developmentally she was behind. She wasn’t sitting on her own. She wasn’t crawling. She wasn’t doing all of those things that she should have been doing by 7 months.

So we started her on RAVICTI and she took it great. The medication that she was on beforehand, she was starting to refuse because it tasted really awful. And RAVICTI doesn’t really have a taste and so she took it really well for us.

The advice that I would give to people that are starting their RAVICTI journey is, obviously, do your own research. And make sure that it’s the right choice for you.

I hope that other families can take from our story just the comfort of knowing that they’re not alone and that there are people out there that understand and that care about them. I mean, I care about every family that we’ve met that has a UCD. There’s a special connection.