Advocacy

Last week, I finished a webinar sponsored by Phoenix Children’s Hospital with Dr. Jeffrey Buchhalter, Pediatric Epileptologist, who was also our daughter’s neurologist. I talked about our journey through seizures, the ketogenic diet, and brain surgery. The main point I covered was advocacy. Along with that, I listed three important points that made all the difference and helped get our daughter better.

Advocacy

* Finding the right diagnosis is crucial.

* The best option for treating epilepsy is at a comprehensive epilepsy center.

* Understand the importance of working together with the neurologist and group of doctors. It should be a “team” effort.

Finding the right diagnosis for our daughter meant leaving behind all the “Well, we think … ” and “It could be … ” kind of comments and looking only at the facts. We also had to face the reality that doctors don’t necessarily have all the answers. In many cases of epilepsy, a cause is never found. And more importantly, when dealing with something as critical as epilepsy, the best place to diagnose, treat, and monitor a child with epilepsy is at a comprehensive epilepsy center where they have all the latest equipment, monitors, and expertise.

And here’s our part as parents or caregivers: we need to work together with the neurologist and team of doctors. It is not a one-way street for either party. The neurologist must rely on the parents to follow through with the prescribed treatment and communicate changes and/or concerns. Remember, Moms, Dads, Grandparents and Caregivers: you are the ones who know your child best. Help the doctor do his job by assisting him in that regard. Communicate what you feel, think, and see. And don’t underestimate that little thing called intuition—it is your God-given connection with your child. No one else has it but you.

To listen in to the recorded webinar on epilepsy and treatments with Paulette and Dr. Buchhalter click here: Webinar You will need to register, however Phoenix  Children's Hospital sponsers this webinar, and your information is kept private.