Doing Your Own "Clinical Trials"

I have been thinking more about Dr. Sanghavi’s criticism of the family he profiled in The Secret Truth (Boston Globe Magainze 12/04/05) for performing “their own clinical trials”. Families of complex (more complicated) special needs children have few options except to become proactive by doing their own “clinical trials”, live in survival mode not really being able to get anywhere in terms of making things better for their child or place their child out of their home.

As Dr. Sanghavi says in the same article “autistic people are like snowflakes: No two are alike, and the clinical spectrum ranges from severe disability to near normalcy.” That is certainly true with only one diagnosis. Adding the dual diagnosis of Down Syndrome and Autism makes the uniqueness even stronger. Each child will manifest the symptoms of each diagnosis differently than if he experienced a single disability. When you add mental illness diagnoses or other medical and developmental disability diagnosis, it really muddies the water.

The late Dr. Ron Roy, Billy Ray’s first pediatric psychiatrist used to say that it would be impossible to cover every possibility in medical school. Combinations of diagnoses change the way any one disability plays out in an individual. In a recent conversation with prominent medical schools, I asked how much training in dealing with developmental disabilities was provided to the average pediatrician (who do not go on to become a developmental pediatrician). I was told that it was “touched on lightly”.

In the Foreword to my upcoming book, Parenting Your Complex Child (April 2006) , Kate Crow, Genetic Counselor writes: “Perhaps the most valuable parts of this book are Ms. Morgan's suggestions for observing and keeping records. Medical researchers don't study many complex children. As health care providers, we depend on the published research to inform us so we may provide advice and guidance to families. If a patient is "complex", and doesn't fit the description of a single condition described in the research literature, we are left with little to share. Teaching parents to observe and problem-solve empowers them to fill in the information gaps for themselves.”

You are the most important expert in your child’s care. Don’t let disrespect for your position or expertise relative to your child defeat that.

I did want to make a side note because I am getting emails when I don’t do Sunday blogs. We do not have support staff on Sundays and I try to do as much Mommie time as possible with Billy Ray. If we are able to go to church (meaning BR is calm and the roads aren’t too icy) I can’t get to the blog until late afternoon. If he is having a bad day I might not get it done at all. Thus, I am suspending Sunday blogs at least for now.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com