A New York Times opinion piece in the July 11th paper talks about the rise of cases in the accusations of Medical Child Abuse. Maxine Eichner the author is the mother of a medically fragile child. As a parent and child advocate this causes me great concern. As a child I was medically fragile. Knowing what my mother went through rushing me to the hospital again and again from the seizures I was constantly having after beating new born at seven months and weighing in at 2 pounds 5 ounces in 1965. It breaks my heart to think of her being forced to hand me over to the state for bringing me to the hospital too often. Many parents who have medically fragile children, who have been missed or sometimes even correctly diagnosed are suffering this indignity.
Often this issue is with parents who are seeing a specialist who has diagnosed a child. Then for some reason the child sees another doctor who disagrees with the diagnosis. The second doctor can then notify authorities regarding medical neglect. Although, parents have an actual diagnosis, and the name of their specialist, authorities still take children into custody. The thing which really makes my blood boil is when so called Judges refuse to hear all the medical history. This leaves a he said, she said Area for doubt because they are without all of the information. These are children's lives we are talking about. Allowing a medically ill child to be removed from both medicine which treats them and while at the same time keeping them from their parents is the cruelest and most evil of ways to treat children.
There is a quote from the article:
"The task force identified these warning signs of medical child abuse: a “highly attentive parent” who is “unusually reluctant to leave his/her child’s side”; a parent who “demands second and third opinions”; a parent who “is not relieved or reassured when presented with negative test results and resists having the child discharged from the hospital”; and a parent who has “unusually detailed medical knowledge.” These warning signs accurately describe many, if not most, loving parents of medically fragile children."
Ms. Eichner is correct. A parent whose child has receive a diagnosis for a medically fragile child is going to find out everything they can and talk about it with the doctors. THIS IS BOTH DAMAGING AND DETRIMENTAL!
So, what is a parent to do? Here are my suggestions:
Choose your Doctors carefully
Starting with your pediatrician.
Stay with your doctors long term
Make appointments with Doctors over the phone
If you notice something you think is abnormal, take note write down what you see date and time
Keep records together
Organize. Them by doctors name
Put most recent records in front
Carry your records to each appointment
Allow copies to be made but keep originals or carry copies with you to give to necessary medical personnel
Ask Grandparents, Aunts, Uncles, Teachers, School Nurse, Coaches, and others to look out for. And note anything they see
If your child is ill and diagnosed with a particular syndrome join a support group
Also go see an attorney who specializes in medical issues. If the worst happens you want someone who already knows you and is familiar with your case. As they used to say an ounce of prevention is worth more than the cure!
I really appreciate Saint Jude's slogan:
Thank God for the healthy children in your life, and give to the ones who are not.
We who have healthy children in our lives need to offer our care and support to