Finding the Correct Treatment Journey
Last updated: February 2022
When we are given a health issue, we face a new journey. When it’s our own personal journey, we do our best to get the right answers and treatment. We just have to manage our time.
It’s a different story when you are navigating the health and welfare of your child. The journey for answers is tied in with the fears of making the right decisions for your child’s future.
Seeking answers for treatment
This journey for answers on the proper treatment can be a long and emotional one, especially when it’s for your child. Because as a parent we are always fearful that we are making the best decision.
In hindsight, I would remind you about the advice I received from my obstetrician when I was carrying my third child. He said, "People think we doctors are gods with all the answers. We are not, so you should always seek a second or even third opinion."
My doctor was concerned for me. At that time, I was a hysterical woman who was nine months pregnant. This was his attempt to calm me down. But I do feel this was and is great advice for anyone going through a troubling period of health issues.
The diagnosis process
Our family’s journey began first with a gut feeling that something just didn’t feel right with our son’s ability to go up and down steps and his gait was off when he was running with his friends.
The second step was to question his pediatrician, who finally recommended having him evaluated at Shriners Hospital after some pushback. After this third attempt for answers, we were sent onto the fourth step to see a neurologist at St. Christopher’s Hospital.
After a few days in the hospital, he endured a string of tests. In addition to blood tests, there was an MRI and spinal taps. Now we had to wait a couple of months before any answers.
Remember this was 40 years ago. Diagnosis and test results were not very quick as they are today. The first diagnosis we received was for Friedreich's ataxia.
We spent the better part of a year digesting this diagnosis. Then we finally decided to seek out the MDA clinic at Children’s Hospital.
Years without treatment options
This being our fifth step towards a diagnosis and of course, we felt there may be some answers on the treatment for him. We were saddened to discover that there were no treatments.
Our family’s journey began in August 1982 and finally, in December 2016 we had a treatment!! As you can see this journey took place forty years ago. This was at a time when there was no real hope for any treatments for your child.
Needless to say, each year was filled with anxiety but also with the hope that SOMEDAY the answers will come.
So here we are in 2022 and the future is more promising than ever. Again I am looking at this journey through the eyes and heart of a parent. We are our child’s best advocate and cheerleader.
Hold onto the optimism and bask in the joy of all the exciting scientific knowledge for treatments and possible cures. Meanwhile don’t forget to give thanks to the Lord for these wonderful doctors and researchers, but mostly for your beautiful child and their healthy future.
Have you experienced neck weakness with SMA?