I have been trying to get a handle on my son’s gas pains for several years now. My son is nonverbal and has cerebral palsy. Responding to all of his issues calls for a good dose of imagination added to lots of research. I have help from a host of wonderful therapists–physical, occupational, speech, and augmentative communication. Nutritionists have helped to improve his quality of life. The majority of specialized physicians have not been been helpful at all. I can only think of two doctors who are the exception. Most doctors I have encountered were not only not helpful but did harm because of their caustic personalities. When my son was young and when I did not know better, I thought I had to suffer their personalities in exchange for their help. Then, I learned that they had nothing to offer me. When I say that my son suffers gas pains, I do not think people understand what this means. He screams and it is clear that he is in extreme pain. He will try to bite himself, me, or anyone who is holding him. All usual activity comes to a halt until the pain stops and a burp is produced.
I have written about the fact that most insight into the care of raising my son has come from mothers who themselves are raising children with disabilities. This has been true of moms I have met and has now expanded because of social networking. I am part of several mothering groups who know each other and respond to each other through Facebook. How it works is that a mother will post an issue/problem she is experiencing and then the moms begin to post responses.
The result is, within minutes, there are several points of view expressed. Some have ideas of diagnosis, some have remedies to offer, and some just provide support.
The remedy for son’s gas issues came at the suggestion of a mom. It was a natural supplement and the symptoms lessened when given. No one suggested this remedy in all the years we have been suffering with this issue. It worked because a group of moms created a virtual community of mothers who are trying their very best to help and support one another.
This season, I once again posted asking what the group is doing to help keep their children well during a school year that has brought many health challenges. I received some practical suggestions as well as supplements to try. I was also given some dietary suggestions to help fortify his immune system. I have started to implement all of the suggestions I been given. My son has been sick so often this season that it has made going to school problematic. One mom agreed that the school year has been tough so far and, like my son, her son seizes when ill. I have never heard of another child having a seizure when sick without fever. I come away from this group feeling grateful for the suggestions and insight. It is also one place where I feel less alone. It does exactly what a community should do. I just never expected to find it online.
Post script: The exceptional doctors in our case are Dr. Stephen Cowan and Dr. CeCe Mc Carton.
Janet Farrell Leontiou, Ph.D. is the mother of Andreas and Zach, 14 year old twins. Andreas has been diagnosed with cerebral palsy and Zach is typical.
Janet is also Professor of communication at Nassau Community College. She is currently on sabbatical writing a second book on medical culture. Her previous book describing her journey with Andreas is called: What Do the Doctors Say?: How Doctors Create a World through Their Words.