Saturday, November 3, 2012

A discussion with the doctor #NHBPM

This was a few years ago, but the emotions from that conversation still hold me even to this day.

We went down to Yale Children's Hospital for a regular follow up visit to the gastroenterologist (GI). Alvin has had issues with his bowels and constipation since birth. During this visit, the GI repeatedly told me that all test results, biopsies, scans, endoscopies, etc, had all come back completely normal. -I- must be the reason that he wasn't gaining weight and his bowels weren't functioning properly. That he had no choice but to call Children's Protective Services (CPS) and report me for possible child abuse and Munchausen by proxy. And he did.

CPS came to our house several times. Both scheduled and surprise visits. They weighed Alvin. They checked our cupboards. I had to feed my son in front of the social worker. This happened for months. At the end of the 'investigation' period, the social workers informed me that they were closing the case and would inform the GI that there were no indications of abuse or neglect.  They did. When Alvin's pediatrician also sent HER report to the GI suggesting that neurofibromatosis might be the cause of the failure to thrive and the constipation. Three days after receiving both, I was informed via phone call that the GI was transferring my son's care from his office. No reason was formally given, but the nurse who called said that the GI was certain that I was abusing my son because NF doesn't cause digestive issues.

HE IS WRONG! NF affects affects every single nerve in the body. Some of the non-diagnostic criteria for NF is small stature, failure to thrive, constipation, etc. Because of his inability to figure things out, or read a freaking pamphlet on NF, I have to live with the fact that there is a case file against me accusing me of child abuse. I have to live knowing that people think I willingly did this to my son. THIS IS WHY NF NEEDS AWARENESS!

Since moving my son's care to a different state/different hospital and being seen by doctor's knowledgeable with NF, we've come up with a nutritional care plan for Alvin. He'll never be 'average' in height nor weight, but as long as he grows along his own curve, there's no cause for alarm. He will always have issues with gaining weight and with constipation. The hope is that as he gets older, he'll be able to find a therapy for the bowel issues that works for him.

The pain and distress that GI put my family can never be made right. I know that he did what he thought was right, however, he should have taken the few minutes it would have required to inform himself of the GI issues common in NF patients.