Here’s what happened at the @ClevelandClinic yesterday



We had to make our way to the Cleveland Clinic yesterday for a Pediatric Neurology appointment. Gavin had a follow-up in regards to epilepsy and autonomic dysfunction. I already shared the results of his Orthostatic testing but you can find those here.

Overall, his appointment went really well. We talked about our concerns in regards to his endoscopy and colonoscopy. Dr. Moodley doesn’t have any overt concerns in regards Gavin being sedated. As long as his vitals are closely monitored and he has an IV established, there isn’t too much to worry about. If Gavin wasn’t as physically stable as he’s been, than it might be a different story but it’s been years since he’s had a major crisis.

As for his EEG, it was mostly normal as well. There was some slowing of electrical activity but I guess that can be related to being on psychiatric medications or having mental health issues.

Having said all the above, we did run into a situation that we haven’t run into yet.



Gavin turned 18 years old this past January and because we don’t have guardianship yet, HIPPA laws prevented his doctor from talking to us. Gavin provided verbal consent to involve us but it did prove to be an awkward situation.

The doctor handled it really well and did what he had to in order to protect Gavin’s privacy. The problem is that Gavin’s not competent and therefore wasn’t able to answer many, if any, questions the doctor had. Verbal consent allowed us to participate in the discussion and insure that relavent information was passed along.

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What I found odd is that Gavin’s obviously incompetent but he can give verbal consent. Until we gain guardianship, this is how we have to proceed.



When the doctor asked Gavin if it was okay to speak with us about his medical care, Gavin was quite confused and didn’t understand why we were having to take a backseat.

We’ve not run into this kind of problem yet but Dr. Moodley was absolutely correct in his approach. Seeking guardianship has taken a back burner recently but we have to prioritize this once again. It’s a process that takes us back to court and we’ve spent so much time in court over the years, we just want to avoid it at all costs. Unfortunately, this is something we have to get done in order to protect Gavin going forward.

Anyway, it’s noted in Gavin’s records that he’s given verbal consent for us to help him manage his health care, at least as far as Pediatric Neurology and Dr. Moodley are concerned.

We’ve inquired about Gavin signing a consent form that covers all his medical care at the Cleveland Clinic and they are going to look into it for us. I should be hearing back soon in regards to that.

Like I said, overall, everything went well. It was just a complicated, awkward experience at first but we figured it out.

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Janet Mease
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Janet Mease

I’ve never had a problem accompanying either of my kids with developmental disabilities to their medical appointments/procedures. They simply sign a form at the doctor’s office or at the hospital, giving them permission to talk to me and share information with me. Before my oldest daughter went in for her cancer surgery, we did a medical power of attorney. The phone number the docs and hospital have is mine and it’s clearly stated that way. There’s a huge difference between guardianship/conservatorship and being a medical POA. Cleveland Clinic appears to be taking that too far IMHO

BeckyW
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BeckyW

I thought you guys had already gotten guardianship. Probably best to obtain it before someone tries to interfere.

kimmy gebhardt
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kimmy gebhardt

I have to say, I’m astounded by your lackadaisical attitude regarding Gavin’s guardianship. I get that you think it’s nothing more than a ‘technicality’, but I pointed out the possibility of HIPAA issues to you in January. If that doesn’t get you moving, maybe this will: there is nothing to stop Gavin’s biological family from trying to contact him. He is an adult and the fact that you adopted him means nothing from a legal standpoint. Neither you nor the courts have any jurisdiction over him as long as you keep putting it off. In fact, should they decide to,… Read more »