DO OR DIE – What we learned at the Cleveland Clinic today

This has been the longest day in quite some time.  As you are no doubt aware of, I had Lizze back up at the Cleveland Clinic today for continued treatment for Borderline Personality Disorder.

The drive was horrible today and took us almost twice as long as it normally would have, mostly due to inclement weather. 

We left two hours early and got there just in the nick of time. 
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Lizze went in for her appointment and I waited in the lobby until the doctor came and asked me to join them, as was the plan all along. 

While what happened prior to my arrival is between Lizze and her doctor, I’m aloud to share what I was privy to.  Essentially this appointment was pretty straight forward. 

There are basically two key pieces of information that you need to know. 
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The first is a slight medication change. Actually, this is just a bump up in the night time dose.  Doing this should help her to sleep at night.  If it helps, that would be a big help to her. 

The second and arguably most important part of today is the ordered therapy and how indescribably crucial it is for her to receive it.  This therapy is called Dialectical behavior therapy (DBT).  The following information is from Wikipedia and can be found at the above link. 

We are still learning about this therapy and so I don’t have a grasp on it yet.  Having said that, it’s very intensive and according to the doctor, a life long process. 

What really caught me off guard was that he said this is so serious that it’s “do or die”. He actually used the words “do or die.”
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I’m not sure that he meant this literally but it drove home the point that we are dealing with a very serious situation. He also explained to me that there is no cure for Borderline Personality Disorder and recovery is a live long process. 

Lizze may be able to get the therapy locally but it’s not looking to promising.  This could mean weekly trips to the Cleveland Clinic for therapy.  It could even be more frequent than that. 

I’m not sure how that’s going to work out but Lizze deserves everything we can do for her.  Today was a four hour drive for a 30 minute appointment.  While the drive is exhausting and expensive, this is the best hope that Lizze has and I will do everything within my power to help her. 

That’s about it.  When I know more, I’ll share more. 

Until then, please keep Lizze in your thoughts and prayers. 

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉

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Lisa Mays

I feel like a lot of parents with kids like ours could possibly have these symptoms and get a diagnosis like this. It can be so hard to work every day at something then regression comes takes your baby away again. We could all fall apart or give in. I feel bad for Lizze – I have days… But since I’ve got to go to work I talk myself out of hurting or rolling over. There is a lot of fake it till you make it! They say the definition of insanity is doing the same things over & over and expecting a different outcome – well WE HAVE TO do that every day!

Michelle Petzold

I’m so glad this update mentioned DBT.

Lisa Shuey

Did you notice that the prescribed therapy is also helpful with spectrum disorders and self-injury? Good info for this house, too.

ProfAmyE

Rob,
I read your post .. the 4hr drive for a 30 min appt. is familiar to me. As luck would have it.. I found your blog today and know quite a bit about BPD and DBT (don’t you love the alphabet soup of medicine.. not) As the mom of a child with ASD (figured Id continue with soup) I relate on many levels. As a psychiatric nurse practitioner I also understand some of the issues faced when BPD and DBT are being discussed. If you ever want to ask questions or bounce ideas you can contact me @ProfAmyE on twitter or by email .

Lost and Tired

TammyMcGann1 borderline personality disorder is definitely tough.  I see what you’re say about it being sorta similar to Autism. That a pretty good comparison.  As for Gavin, that’s a really good question.  Luckily, we see his psychiatrist on the 27th and I will be bringing that up.  
Thank you so much for caring.

TammyMcGann1

I was off Fb for a while so I never read what became of Lizze’s headaches.  Are they being attributed to BPD?  I know several people who have BPD and wow, that is one tough diagnosis.  In a way, I feel like it’s similar to autism because both groups of people have to learn how to function in a Neurotypical society.  And it seems like if a person has a mental condition, they usually end up having more than one diagnosis.  Do they think that Gavin might have it as well?  I know some people who have been born with it and others that developed it because of significant childhood abuse.  Gavin’s behavior seems very much like BPD from birth.  Sorry for all of the questions, but I feel for you and Lizze because BPD is TOUGH.

Lost and Tired

EllenBeck Thank you

EllenBeck

I hope the best for Lizzie and hope you are both able to follow through with the meds and the therapy.

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