The blog has been slow going lately, I know. The problem is I have been writing, but am to afraid to post because they deal with some hot topics. But these things are not going away so I guess that I will start posting them. This post was set to publish on rare disease day, but I chickened out :)
Let me start off by saying Happy Rare Disease Day!!!!! Don' get me wrong. I love Rare Disease Day. It's the one day out of the year set aside for the numerous rare medical conditions affecting people world wide. It's the day that we all band together for a common cause. To make our voices heard. But what do we do with it? The majority of people will change their profile picture on FaceBook to an awareness ribbon or the one with the heart cutout that our children's pictures fit oh so perfectly into saying "I Love Someone Who is Rare". We may even send an quick email to our politicians, partake in some activity, make a status post about the condition that we live with, answer a few questions from people on our friends list, or celebrate within our groups over the day and then..... Then that's it. It's done. Finished. Over . And we go on our merry little way thinking that we've made a difference with the condition that we deal with on a day to day basis. That we have increased knowledge, awareness, and understanding. But have we really? Or has our complacency lulled us into a false sense of security while turning a blind eye to a very real issue happening right now that could affect some of us? The "Parent-Ectomy". Tuck it in peeps, this is going to be a long post.
So what is the parent-ectomy? It's a slang term meaning removal of one or both parents from a child.
It's used when there is a disputed medical diagnosis that led to parents either losing custody or being threatened with losing custody. (You now here these cases being called "medical kidnapping".) Typically in these cases, the child has been diagnosed elsewhere with one of several relatively new disorders that are complex, poorly understood, and controversial.
The child's medical record usually contained references to the parents being highly stressed and difficult to handle. And when the parents in most of these cases rejected the suggestion by doctors that the child's problems were more psychiatric than physical, that sparked the medical teams' concern, paving the way for a call to the state child-protection agency.
To go along with "parent-ectomy" there is also a new term that pediatrician Carole Jenny and her psychiatrist husband coined "medical child abuse". Although Dr. Jenny and her husband came up with this term some time ago, it has taken hold in the medical world just in the last few years. It has become a controversial catch-all for a wide spectrum of cases in which health care providers deem parents acting against the best interest of their child in a medical setting.
Many such parents used to be diagnosed with Munchausen by Proxy, a psychiatric condition in which they seek attention from the medical community by exaggerating, fabricating or even inducing a child's illness. The new term avoids references to parental motivation.
Dr. Eli Newberger, a pediatrician who founded the child protection team at Children’s in 1970 and ran it for three decades, cautions that “doctors in this new specialty have enormous and really unchecked power.”
As an expert witness in cases around the country, Newberger said he's seen a tendency for state child-welfare agencies to be "overly credulous to hospitals" and for some child protection teams to show a "reflexive willingness to label and to punish," especially educated mothers who are perceived as being too pushy.
Assertive parents, armed with information from Internet support groups and believing they're advocating for their child's best interests risk alienating doctors and nurses, leaving them few allies if they find themselves accused of medical child abuse.
Parents should learn early on that when dealing with schools, neighbors, doctors, the police, etc. a measured and reasonable tone is often more important than anything they say."
The above information was taken from a Boston globe article regarding the Pelletier case. Click on the link to be taken to the article.
Are you worried? I am. Especially over the last quote I took from the article. We as patients and parents dealing with a rare medical condition have a lot on our plates. When it's time to go to the hospital we are scared, frustrated and would give anything for the condition to go away. Dealing with Dr.'s who have never heard of the condition or don't believe in it only adds to our anxiety. When we watch the medical professionals do something that shouldn't be done only adds to everything we are experiencing. For example, when our son had his surgery at one point during his stay it was time for his medications. The nurse was pushing them through the I.V, when he started screaming in pain. She stopped to make sure the I.V hadn't infiltrated and then continued. When I asked her if the meds had been warmed over our son's screams she said "If he can eat cold things he can handle this" completely oblivious to the rash starting up his arm and appearing on his face. I was furious, but there was nothing I could do but log a complaint with the hospital. The nurses after were nothing but sweet hearts, who wrapped any med that needed to be pushed through the I.V in hot hands before giving them. Did the hospital label me as being to "pushy" over this? Did they not like my tone when I reported? I didn't yell or scream, but I wasn't giggling and acting happy either. I was in a hospital 2 hours away from home with a little boy who had just had surgery and a reaction on the operating table that affected his heart. I was worried, stressed, and had just watched a nurse put my son in pain, risk anaphylaxis and it could have been avoided had she believed in CU.
Schools. Do you watch your tone with schools? For the most part I do and trust me our school and I don't get a long. Why? Because they don't believe that CU is serious and only affects the person during swimming. They have not followed action plans set forth by Dr.'s and pull accommodations made for the kids. Why? Because we refuse to sign a medical release giving them full access to our children's medical charts including genetic testing, history and physicals from past and future appointments and whatever else they might want at any point. One day I received a phone call from the district nurse telling me that our allergist wanted us to come down and sign a medical release form. She said it had to be done right now and kept pushing for me to get there and sign it. When I told her that this was out of character for our doctor since he was one who advised us not to and I would call him to see what changed she said "just between the two of us, your doctor told me he thinks you're a horrible parent for enrolling your kids in school." I of course called the allergist in such a state that I can't believe he understood me at all though the sobs. He told me this was never said by him and I learned the real story. The school had called him saying we were in a 504 meeting and that my husband and I were requesting they send the kiddo's full medical charts. When he said "sure, but only with a medical release" they told him we were unable to sign one at the moment due to the meeting but if he sent the records, they would make sure he had one by the end of the day. Naturally I called the superintendent and told her I didn't appreciate it. When she said the nurse was working under her orders, I chewed her out. Did I use a tone she thought was acceptable? No, I didn't and it was evident when she hung up on me and pulled the accommodations for the kids she said were set up, even though it violated the Americans With Disabilities Act. But she new we couldn't afford an attorney, so why should she care????
I guess I don't understand why parents have become the enemy. Please don't get me wrong. I know there are cases of legitimate abuse and I fully support taking the kids out of the care when that happens. But when did your tone or learning about your child's medical condition become grounds to remove a child from the home? Why do parents have to bite their tongues when people are doing things that will make something worse or are illegal because the repercussions will be aimed at the family instead of the person committing illegal actions? Most importantly, when will this trend end? I can only see it increasing with the ongoing controversy over making immunizations mandatory.
Adding to this subject (May 2015) is now the Education Secretary, Arne Duncan. Mr. Duncan has now proposed the idea of 24/7 boarding for public schools. In his opinion "there are some children we should have 24/7." Now to be fair Mr. Duncan talked about this idea during an event to discuss youth violence and I don't ever really see this going anywhere. But humor me for a second....what if it does? What would happen if this were a reality? Let's look back at what happened with our school district? When we refused to sign the medical release would they use Medical Kidnapping and have our children placed in one of these boarding schools? You can't give this option and leave it up to the schools to decide who goes to boarding and who doesn't and expect some administrators not to use this for, in their terms "problem parents". You know, the parents like me who sit there and say, "yes the condition is real, NO I don't have to give you access to genetic testing, lab tests, chest x-rays, history and physicals, etc. and I have talked to my doctor who has advised me not to do this before I made my decision."
So while we tuck ourselves into bed tonight, content with what we have done for Rare Disease day, remember those families that are missing one person due to a parent-ectomy or medical kidnapping. Then ask yourself if we as a community, no matter what rare disease you are battling, have done enough.
Click here to see a FB page dedicated to sharing stories of Medical Kidnapping.
Click here to read a report about Mr. Duncan talking about public boarding school.