The Cleveland Clinic called today -

The Cleveland Clinic called today

I got a call from the Cleveland Clinic today about Gavin.  They were actually returning my call from earlier.  It’s truly amazing how quickly the Cleveland Clinic can return a phone call.  🙂


We discussed Gavin’s new symptoms and the possibility of finding a doctor or clinic that can look at Gavin’s chronic health issues as a whole.

I think it’s important that we try and move beyond addressing things as individual health crises. What are the chances of one child having all of these major health issues and not having them all be somehow connected?

Anyway, they (the Cleveland Clinic) will be looking into finding any additional options. 

They’re also looking into whether or not Gavin can take Miralax without throwing off his fluid balance. I’m supposed to hear back sometime in the next day or so.

Fingers crossed for good news…..

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Raynette Jones

i hope they can get a team together for you. with my sons health issues (i have boxes of paperwork) i have tried to figure something out myself and i am at a loss. I am just going to take it easy today. just tried to get on the obamacare website and it is down for too many people trying to get on.


When I was dealing with the Cleveland Clinic due to the Great Headache Crisis (GHC as I call it), they would leave me phone messages, and if I didn’t call back within a few days they would leave me more messages nagging me to call them. Quite impressive, I think.
I have recommended their headache program to everyone I meet who has serious headache problems. Awhile back I struck up a convo with a guy at the pharmacy while we were both waiting for prescriptions to be filled. He told me his wife had chronic headaches. I wrote down the info about the I-MATCH program and told him that he and his wife should check it out.


Curious why someone doesn’t just send him for a KUB if you’re considering being backed up as a cause for current abdominal pain?  It’s quick, and easy, and even a crappy hospital with no autism experience or complex child experience can take one, send it elsewhere and read it.  Poop is highly visible, and after a few, you could read them yourself.


I think sometimes you fell like you are on the show mystery diagnosis at time.

Would love your thoughts, please comment.x
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