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


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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

 

February 17, 2021-   March 4, 2021 - 150 MG Trazadone (bedtime as needed)

February 17, 2021  - March 4, 202 - 120 MG Propranolol 2x a day, as needed for heart

February 17, 2021  - March 4, 2021 - 80 MG Latuda 1x day/dinner

February 17, 2021  - March 4, 2021 - 300 MG Lithium 3x/day

 

NEW HOSPITAL

March 4– April 1st - Lorazepam - 1 MG 3x day, April 12th, 2021 – current - Lorazepam (Ativan)- .5 MG 3x day
March 4– April 1st  - Quetiapine - 300 mg - bedtime, April 12th, 2021 – current
March 4– April 1st - Divalproex 250 mg - 1 - morning and 500 mg/night, April 12th, 2021 – current - decreased to 500 mg bedtime
March 4– April 1st  - Mirtazapine 15 MG/bedtime STOPPED April 8th

March 4– April 1st - Quetiapine - 50 MG 2x day, STOPPED April 8th

 

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Very good question, Jen.

 

How do you feel Reagan was treated improperly?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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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. 

February 17, 2021-   March 4, 2021 - 150 MG Trazadone (bedtime as needed)

February 17, 2021  - March 4, 202 - 120 MG Propranolol 2x a day, as needed for heart

February 17, 2021  - March 4, 2021 - 80 MG Latuda 1x day/dinner

February 17, 2021  - March 4, 2021 - 300 MG Lithium 3x/day

 

NEW HOSPITAL

March 4– April 1st - Lorazepam - 1 MG 3x day, April 12th, 2021 – current - Lorazepam (Ativan)- .5 MG 3x day
March 4– April 1st  - Quetiapine - 300 mg - bedtime, April 12th, 2021 – current
March 4– April 1st - Divalproex 250 mg - 1 - morning and 500 mg/night, April 12th, 2021 – current - decreased to 500 mg bedtime
March 4– April 1st  - Mirtazapine 15 MG/bedtime STOPPED April 8th

March 4– April 1st - Quetiapine - 50 MG 2x day, STOPPED April 8th

 

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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.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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