Dysautonomia: 8 years in the making

Dysautonomia: 8 years in the making

Tomorrow is a big day for the Lost and Tired family.  We will make our trip to the Cleveland Clinic in search of answers to Gavin’s continuous decline in health.

For those of you new to this blog and our story,  I give you some brief back story.

Gavin is an extremely rare child. Not only is he an awesome kid but he has a huge list of very serious health issues.

So far this is what we know for sure,  both serious and less serious:

1) Aspergers
3) Primary Immunodeficiency
5) Asthma
6) Degenerative Neurological Disease (yet undefined)
7) Dysautonomia (autonomic disorder)
8) Epilepsy
9) Schizoaffective Disorder

Gavin has lost all his lower reflexes and muscle tone and some control over his tongue.  It’s affecting his speech and it seems like affecting his breathing at night as well.

There are a few more minor issues but this is more than enough.

The reason we are going back to the Cleveland Clinic is so that we can identify exactly how much of Gavin is affected by the Dysautonomia. 

Right now we know that it affects his ability to maintain his blood pressure and body temperature.  It also appears to be affecting his GI system as well. The Dysautonomia clinic,  located within the Cleveland Clinic,  will hopefully be able to provide us with more information and officially diagnosis Gavin with the exact type of Dysautonomia he has.

Once we figure this out,  then we move to the degenerative neurological disorder. 

I’m so tired and it’s been a very long 8 years that we have been relentlessly searching for the answers to the questions surrounding how we help Gavin.

I pray that tomorrow will finally bring with it some desperately needed answers.

**Thanks for reading**

       -Lost and Tired

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