The coming weeks

In the coming weeks,  the Lost and Tired family has a great deal of traveling to do, in our quest to find answers. 

These trips will be to the Cleveland Clinic and they begin this coming week. 

Gavin, Lizze and myself,  will meet with a new psychiatrist on Wednesday.  This may or may not be a replacement for our current psychiatrist.  It’s more of a second or third opinion. When it comes to some of the decisions we have looming,  we want to be very sure that we are doing the right thing,  for everyone. 

We want to rule out anything being overlooked. 



Six days after this meeting,  we will return for Gavin’s skin biopsies and followup with the autonomic clinic and neurology.

This won’t be a pleasant appointment for any of us.  They are going to take skill samples from various areas and examine them to help isolated the specific autonomic disorder he has.  I think they said they would be looking for neuro fibrosis

The results of this test will help them to create a tailored genetic test to search for the exact cause.  Without this information,  there is not much we can do not help him.  Too many symptoms overlap and the water,  so to speak, is to muddy to see the whole picture.

Shortly after this appointment,  Lizze begins her journey at the Cleveland Clinic as well. 

Since she decided to seek a second opinion before agreeing to the occipital nerve block and botox,  her doctor seems to be refusing her any sort of pain relief.  The kicker is that this doctor had taken over her pain management as well.  Lizze has been out of everything to manage her pain and they are not issuing any refills. 

They have essentially left her high and dry. 

I’m going to be making a phone call in the morning of try and clear this up. 

When we spoke with the Cleveland Clinic nurse,  she said that Lizze is doing the right thing,  seeking another opinion before agreeing to that procedure. 

Patients have rights and are in control of their medical care.  If she didn’t want to have huge needles,  shoved into the back of her neck or muscles in her forehead paralyzed by botox,  without a second opinion,  she has that right.  For the record,  I completely support her decision. 

Anyway,  the appointments will continue for her.  She will be seen by rheumatology, neurology and the autonomic clinic as well. 

Our goal, is to get Lizze her life back.

This journey will take us well into 2013 and beyond but if it has even the slightest chance of helping her, it will be worth every effort. 

We also have a ton of stuff with Akron Children’s Hospital coming up as well,  but I don’t have those appointments yet.  Their on my to do list. 🙂

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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  • MicheleChaney says:

    That was my other thought but it's still stupid…they shouldn't let there personal feelings get in the way of care.
     

  • MicheleChaney says:

    How frustrating with the pain management…do they think she's a junkie??! People can be stupid. Angry on your behalf.
     

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