A Must Read For Parents Of Chronically Ill Children

[Lenna]

There was an article today (part 1) on the front page of the Boston Globe that is a horrifying story of parents who have lost custody of their teenage daughter who has mitochondrial disease. The parents have been too "aggressive" in trying to get her the help she needs, and two hospitals are in a power play about whether the girl's issues are medical or psychiatric. So one of the hospitals filed a "medical child abuse" claim against the parents, took the girl off her meds and put her in a psychiatric ward, where she has languished for months.

I read the article and thought "There by the grace of God go I." These are both highly respected hospitals that have treated my son for POTS, and in fact one of the doctors involved (one of the good guys) is still his gastro. I can tell you that there were times when I was very aggressive in getting my son the treatment I felt he needed, and I'm sure every parent of a sick child can relate to that. The article also mentions that the girl acted sicker when her mother was around. What kid doesn't behave that way?? This story is heartbreaking and confusing. I'm grateful that my son is now legally an adult so this is not something I need to worry about as I continue to aggressively advocate for him.

I wonder if any of you agree that it would be less likely for doctors to be so quick to put a teenage boy in a psychiatric ward as they did with a teenage girl.

You can't log into the article without a subscription to the Globe, so I copied it onto a Word file and put it on Dropbox. You can read it by clicking on this link. It's a very long article, with part 2 coming on Monday.

https://dl.dropboxusercontent.com/u/24675071/A%20medical%20collision%20with%20a%20child%20in%20the%20middle.docx

[sue1234]

Before I read it, just want to say this ordeal sounds horrifying! And, I am a 50-something year old woman, and I tend to act worse when I am alone and "stoic" when I am around doctors, so I can understand how she would act "better" around doctors. I think I act like that because I am afraid they'll look at me as a "hysterical" female if I act what I feel like.

[looneymom]

This is scary. Thanks for posting.

Rachel

[Christy_D]

This story could have been written about me as well. Thank goodness it didn't happen, and now my son is also an adult age. Very,very, scary. We had doctors telling us is was psychiatric and I refused to accept that diagnosis, knowing it wasn't true.

Christy

[Hope]

I saw this on FB. Horrible! I can see it happening, probably a lot of people with chronic illness can relate with being told their symptoms are in there head and/or anxiety related. You would think by now this kind of thing would be a thing of the past.