If you’re a parent or caretaker of a child with a urea cycle disorder (UCD), having the latest information can help make treating their UCD easier for everyone, especially when it comes to areas like school. Maybe math is a struggle, reading levels aren’t quite where they should be, or socializing is hard. But, here you’ll find resources that can help.
Hear from one family, both the parent and child, on how they handled their transition of care
Helping your child manage their care
Hear how Rameses helped transition his daughter to taking the reins of her own health and management.Read transcript
I’ve realized over these years, I’ve been so hands-on that I’ve kept a lot of this knowledge and expertise of what I’m doing in my own mind. And I share it with adults, but not always with my children. Because I’m like, well, I’m doing it for them. But you got to be able to translate your, your knowledge and understanding of how to not just survive with OTC deficiency, but thrive.
My oldest daughter, as an adult being 18, went into the doctor’s room by herself. And she actually had her own conversation with her metabolic physician for the first time, without mom or dad in the room. That was even a little scary. Because it’s kind of like my baby’s growing up, you know, or is grown up. But I said, you know what? At the same time, it’s a sigh of a little bit of relief cause it’s like, hey, some of this burden is lifting up and she’s becoming her own woman.
Mykah's steps to independence
Mykah’s Steps to Independence
Hear how Mykah worked with her father on taking on her own care as while growing up.
So, normally what I like to do for fun is singing. That’s probably one of my favorite things. I am in choir right now. And it’s definitely brought a lot of joy. Second, probably playing my violin. I’ve been playing the violin since I was, like, in middle school.
I played basketball, for, since I was like about five years old. I also do enjoy hanging out with friends on the weekends. And I do have a part-time job.
Some of the first steps I took into taking my condition on to a different level especially since I turned 18, would be, would be, one, learning how to measure, to measuring out all my medication. Because I don’t, just to make sure that we don’t under or over, ah, any of my medication intake.
My dad right now, he would probably say the most difficult part…is me making sure that I remember to take my medication on time, and me making sure that I remember to measure things out.
Keep a binder with all your documents and everything that explains you. Especially whenever you come from doctor visits and they…change your regimen or give you check-ups and stuff like that…especially if you’re going to be like living on your own. It’s very important to just stay on a schedule.
Some of the other things that we did was getting in contact with doctors…that way they can help you help yourself.
Put yourself in the mindset of the first time you took your child to teach them how to swim. You have that kind of underlying fear of, oh, people can drown from this, but you still want your child to learn how to swim. And so, you graciously teach them how to swim and now it’s like the fear is gone. They know how to swim. Make sure you give them the education they need. Feel confident that you have, you’ve trained them the right way to manage their care and always let them know that you’re going to be there for them, no matter what.
To my dad. I would just give a really, really, really, really big thank you, because, whenever we were younger, he made sure that he did all kinds of research. Whenever I went to doctor visits, he made sure that he asked all kinds of questions. Made sure that whenever they wanted to give medication and stuff like that, that he knew what was going to go inside of me before it actually went inside of me.
It might be scary living on your own and you don’t have somebody to always check on you or always make sure you’re eating the right things.
As long as you know that you did everything you could to learn about your condition.…just know that it’s gonna be okay.
What Is a UCD? Coloring Book
This coloring book is a great way to help your child understand urea cycle disorders. It breaks down UCDs into simple, easy to understand terms for your child. This fun activity covers diet, physical activity, medicine, and more. It’s great to be completed alone, with a parent, teacher, or even friends!
MEDIKIDZ explains UCDs to children
Discover a free comic series that helps children understand urea cycle disorders in a fun and adventure-packed way. Every Medikidz comic is written and reviewed by doctors and other leading medical and health-related professionals. Sign up to get your free copy.
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