I’ve been engaging back and forth with the Cleveland Clinic this week, in regards to Gavin. In particular, I was speaking to Dr. Moodley’s office about where we go from here.
As much as I was hoping to find some miracle answer to my prayers, I was sadly disappointed.
Dr. Moodley has decided to back Gavin down a bit on his medications that manage his autonomic dysfunction. Apparently, this was the recommendation of his colleague at NYU.
I had called Dr. Moodley because I don’t know where we are supposed to go anymore.
Gavin’s continual cognitive regression is terrifying for us to watch. It’s directly impacting his daily life and we need to focus on that to figure out what the hell is going on. If there’s something that we can do, we need to do it. Gavin’s deserves a fighting chance at the very least.
As far as the autonomic dysfunction is concerned, Dr. Moodley’s new recommendation is to contact the Mayo Clinic..
Please hang tight while I beat my head into the wall out of frustration over feeling like a goddamn ping pong ball. Thank goodness Emmett gave me that bike helmet the other day. O_o
I realize that Dr. Moodley is doing everything possible but I’m frustrated, angry, disappointed, terrified and desperate. I simply can’t accept that we have run out of options or that there is no one out there that can provide new insight into Gavin’s overall health issues.
As for the cognitive regression, we have been referred back to where our journey first began, our pediatrician.
Don’t get me wrong, I absolutely adore our pediatrician. It’s just that coming full circle feels a whole lot like starting over. That is such an incredibly helpless and hopeless feeling. :'(
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MSRheinlander Lost_and_Tired Hi again Mr. G! This won’t make a diff. but I want you to know that I get it. Purely anecdotal but it…
dont give up hope. you are doing the best you can. i no it is scary when the drs keep sending you around in circles cause they don’t know what to do. i TRY to remember drs are just people too doing the best they can with what they no. it is really hard to have hope when they send you back to the pediatrician, i would skip that visit and just email him LOL. i wish like you that the “team” could at least get on a conference call or skype and at least say they all discussed it. thank God i dont drink, i was at a grocery store today that was closing their doors and everybody had grocery baskets full of wine that was 40% off and they were happy. It made me happy they were happy. you have to try and rest while the kids are at school. it might be good to get yourself to the dr for your depression again (even though you have real problems) maybe a change in your meds might help. I will be praying for your family. You are such an inspiration to me because you keep hanging on and I feel your issues are more consuming than mine and if you can keep going i can too.
I’m sorry to hear this, Rob. Sometimes hope is all that can keep us going… don’t lose that.
Have you ever thought about trying a different set of hospitals? Houston has one of the worlds best medical centers and our Childrens hospitals are top notch. Maybe they could figure something out that others haven't? http://www.texaschildrens.org/autism-center/
I am sure that you have searched high and low for doctors but I wanted to share this post that I found. Maybe you can contact their office and see if they have an more recommendations. http://www.autism-world.com/index.php/2007/11/02/best-doctors-in-autism/