Operation Hope: Wraparound

We have yet another Wraparound meeting this morning.  I’m going to be really honest here and tell you that I’ve pretty much given up on Gavin going to residential placement. 

The truth is, he’s doing really well right now and no one is going to place him. 

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I’m actually okay with that because we just want what’s best for him and if this is working than why rock the boat.  The huge downside however, is the fact that he wasn’t going simply for behavioral reasons. 

The hospital we were looking at would also be focusing on his physical health as well. 

Gavin’s health is so complex and fragile that no one has been able to really pin down what’s going in with him.  Our hope was that this would happen as part of the residential placement. 

I don’t know what to do anymore, not that I ever really did. 

This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos. I know how to spell but auto-correct hates me.  😉

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.


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rmagliozzi

Rob, have you done any genetic testing? I’m part of a PANDAS support group where many of the kids also have autism. We have found the majority of our kids have at least one genetic mutation or more. MTHFR deletion seems to be the one most have in common. The more mutations our children have, the more physical and behavioral problems they tend to display. One has dysautonomia, and many of the other things Gavin displays. She has several mutations that mess up her neurotransmitter levels. There is a genetic test that looks for more than 92,000 genetic mutations online many of us have done for our kids through 23and me. They also display risk factors for a variety of health problems and chronic diseases. Right now they have lowered pricing. There are a few doctors who are versed in biochemistry and can treat these mutations, so it is treatable.

lostandtired

@rmagliozzi Gavin had a chromosomal microarray done. They found nothing. Can you believe that? Absolutely nothing. 🙁

rmagliozzi

@lostandtired  @rmagliozzi That’s crazy. I mean, all his problems had to come from something.. I did read dysautonomia is related to an imbalance with the hypothalamus, and that governs sleep, emotions, appetite,and a ton of other things. etc. Docs are now finding out it is a key player in PANDAS.  I wonder if that could be the cause of his problems. I mean, you’ve done MRIs and found nothing abnormal. My son with PANDAS and autism shares most of the diagnosis Gavin has, minus the RAD and PTSD and no dysautonomia. He would have been labeled bipolar if we hadn’t realized it was PANDAS (he had many of the symptoms). We have a friend who also has PANDAS and dysautonomia.
http://www.upright-health.com/pituitary-gland.html
Wow. I just found an article linking dysautonomia to a slew of conditions including PANDAS. Crazy.
 http://suite101.com/article/dysautonomia-a28601
 
I hope somebody figures it out.. sorry for rambling. I am always fascinated on how things are so interconnected.

lostandtired

@rmagliozzi we actually see the neurologist on the 5th and I’m gonna ask. Thanks for the info.

rmagliozzi

@lostandtired  @rmagliozzi No problem. I was looking into this for my kids as well. Here is another article you might want to read on it as well. They give a list of hormones you can check as well related to this.
http://health.nytimes.com/health/guides/disease/hypothalamic-dysfunction/overview.html

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