Almost completely off these medications! How Do We Advocate to Prevent This From Happening to Others?

[Reagan]

For those of you currently in this hell, I just want to give you some hope. We only have a few more days until we are completely tapered off 100%  We completely stopped Lorazepam last week and will stop Quetiapine and Divalproex in a few more days. Reagan's symptoms have been anger, confusion, exhaustion, etc. Thank you so much to all of you. 

 

My question is - how, as a parent - can we advocate for universities and hospitals to do a more thorough job diagnosing patients? I feel like since we went through this experience, it is our responsibility to help prevent it from happening to others; but how. Anything to get me headed in the right direction is appreciated. A simple gene test could have prevented all of this (the misdiagnosis.) 

 

Thanks again! Jen

 

[Altostrata]

Very good question, Jen.

 

How do you feel Reagan was treated improperly?

[Reagan]

First, She was prescribed 50 mg of Zoloft after not reacting well to lexapro. From what I read - after a bad reaction the are to start w/1/5 of the minimal dose which would have been more like 5 mg. She immediately could not sleep and this is what put her into a manic state. 

 

Then, when at the hospital, I told them I felt like she just needed sleep but they encouraged us to send her to a behavior hospital. They put her on all these drugs only to find out that it was medical toxicity. So, then all her side effects that they said were "bipolar" were actually from the drugs they administered. 

 

Our insurance is very good but it doesn't cover the gene test. If more people did this gene test they could see what drugs are metabolized correctly by their patient instead of guessing. Most of the meds Reagan was prescribed were not compatible with her metabolism causing additional side effects. 

 

Behavior hospitals (the two we went to) could not set up a visit with a neurologist or administer the gene test.  It seems like they would want to rule out everything. It seems like they just jumped to a conclusion without really understanding her history. At one point they said they didn't have enough support for her to go to their outpatient program. Her behavior was a result of the medications they prescribed her. 

 

I feel bad for people who can't afford to do these things. It's been over 100K and thank goodness we have good insurance. I want to advocate for more careful diagnosis and support while in their care. 

[Altostrata]

Thank you, Jen.

 

Unfortunately, a lot of people go down the rabbit hole of misdiagnosis after an adverse reaction to a psychiatric drug and end up on an unholy drug cocktail that's entirely wrongheaded.

 

The adverse reaction some people have to antidepressants may not be governed by the genes profiled in those gene tests. But it's good to hear she's not taking drugs that cause severe adverse effects any more.

[Jennings]

As an FYI,  I had an adverse reaction to Effexor, which started my whole over medicated nightmare, and the gene test i took said the Effexor was the best med for me to take.

[Reagan]

@Jennings @Altostrata Thanks for the feedback. It just seems so wrong to me for medical providers to make an assumption someone is bipolar that has no  history of any issues in the family whatsoever.  (I read a book that said most bipolar people come from a troubled background.) You would think they would first try to make sure it's not medicine toxicity and then....lean the other direction. Both hospitals were treating Reagan for symptoms created by the medications they administered. Absurd. 

[Jennings]

I agree with you.  I had a very similar story.  Adverse reaction lead to poky drugged, which lead to them thinking I am now bipolar when I came off.

 

I hope everything works out for you.

[Altostrata]

2 hours ago, Reagan said:

@Jennings @Altostrata Thanks for the feedback. It just seems so wrong to me for medical providers to make an assumption someone is bipolar that has no  history of any issues in the family whatsoever.  (I read a book that said most bipolar people come from a troubled background.) You would think they would first try to make sure it's not medicine toxicity and then....lean the other direction. Both hospitals were treating Reagan for symptoms created by the medications they administered. Absurd. 

 

It is very wrong, and against good medical practice. If you can, you might make a formal complaint to the hospital or medical group and your state health agency.