5 Ways To Medically Advocate For Your Child

 I learned a lot having a kiddo with a rare condition like Panhypopituitarism. But the most important is exactly how to advocate for my child. When you're thrown into such uncertainty, one thing you do know by instinct is to keep moving. But no one teaches you how to move. 

With Dot, the medical issues that she has had since birth like Craniosynostosis and Panhypopit - they're extremely rare. The Magic Foundation explains the Panhypopit thing a lot better than I ever could. 

The point being: You learn to advocate. You learn early, you learn quickly, and you use what tools and skills you have to fight for you kid's life as best as you can. 

Here are some tips to help those of you who are new to this process, there's always more to learn, but this will get you started. 

1. Ask questions. This is not only for your information regarding what's happening with your child, it'll also give the doctors and nurses an idea that you're on top of things and there to advocate for your kiddo. 

2. If you don't like the way a doctor is treating you or your child - find a new one. Get a second opinion. Doctors are a service like anything else and don't deserve your money if they're not going to listen to and try to address your concerns. 

3. Get other specialist doctors involved. Talk to all of your kiddo's specialists. We happened to have many, so I spoke with every doctor I could about ANY concern I had regarding Dot. This was the only way that I eventually got help for Dot's craniosynostosis. I talked to every doctor we saw together, no matter if that was their specialty or not. Turns out, our Developmental Specialist was the one who listened to me, and was able to get imaging done on Dot that diagnosed her in time for CVR surgery. 

Dot 11 months old, the day after CVR surgery. 

4. Join online groups that support what you and your kiddo are going through. I joined some Panhypopit groups, craniosynostosis groups, and feeding tube groups. I learned about new methods to try, ways to wean Dot safely from her g-tube pump, and got general support and info there. This was priceless as scared parent during one of the hardest times of my life. 

5. Write down your thoughts and questions for the doctor. I can't tell you how many times I thought of a legitimately good question, only to blank at the doctor's office and forget everything I had prepped for because I was too busy getting the kiddo undressed or weighed or quieted down so I could speak to the doctor. So, write your questions, thoughts, concerns down and bring them with you to appointments. 

Feel free to contact via this form if you're a parent or guardian with questions - or if you just need someone to talk to who's been where you are. You're never as alone as you feel, so please reach out!