Jun 13 2013
I wanted to update you all as to how Lizze is doing. She was moving around s much better today. Some parts of her are feeling better but her migraine is worse.
She was a big help today and I’m so grateful for all she managed to get done today.
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Jun 13 2013
I owe you all the rest of the story from our appointment with Dr. Patti on Tuesday evening. We know now that Gavin is in fact both psychotic and manic and we began addressing that tonight with a change in medication.
What I didn’t have time to share with you all yesterday has to do with bladder control issues we’ve been dealing with.
Our appointment in Cleveland that has been rescheduled for the 26th of June, was to rule out any physiological or structural problems that could be causing this to happen.
However, Dr. Patti reminded me last night that this could very well be a behavioral issue. It’s something commonly seen in kids with Reactive Attachment Disorder and bipolar as well.
I had actually completely forgotten about that.
For a very long time, we had issues with Gavin relieving himself in very inappropriate places, like the floor register in his bedroom, just as an example.
I’ll leave it at that but what Dr. Patti said makes a lot of sense.
However, it’s also possible that this is an autonomic issue as well. Gavin’s neurologist at the Cleveland Clinic wants to rule out physical problem with his bladder before we explore the autonomic side.
Once again, we have at least 3 possible causes to the bladder control issues Gavin has be experiencing.
Personally, I feel that it’s either behavioral (which he has a documented history of) or autonomic. Perhaps it’s a combination of the two. Perhaps it’s something all together different.
Who the hell knows?
This is a perfect example of what makes Gavin so complex.
On the surface, it could be one of three things or some variation or combination as well.
With the history of behavioral issues surrounding urinating in places other than the potty, it could very easily be behavioral. However, with all the autonomic dysfunction and neurological regression, this could be totally outside of his control.
The only thing we can rule out for sure is a structural problem.
Once again the water surrounding Gavin’s condition is made muddy by the many complex pieces that make up who he is.
Frustrating and daunting are the words that come to mind when I think a out how we are going to address this.
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Jun 12 2013
We just got back from the psychiatrist with Gavin. The bad news is that Gavin is indeed psychotic. The bad news continues because he’s also manic as well.
To be completely honest, this wasn’t really unexpected.
We’ve been suspecting that he was manic for a little while now but we’re allowing him time to transition home before pursuing the manic avenue.
Unfortunately, this has nothing to do with transitioning and has everything to do with his meds needing to be adjusted. At this point our options are somewhere limited because nothing else has ever worked.
What were doing right now is increasing the Clozapine as that’s both safer and faster than increasing the Lithium.
Now we just wait and see.
We do go back in one month and follow up.
If this doesn’t work or he gets worse, I haven’t a clue where we go from there.
I’m going to remain positive about this change and really hope that it works.
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Jun 12 2013
We arrived at Gavin’s 3:05pm appointment with his psychiatrist and apparently he’s running 1 hour behind.
Gavin, Lizze and myself did some running around and now only have about a 15 minute wait left.
It’s actually been kinda nice because the three of us never get to spend time together like this. Gavin’s been having another awesome day and I’m soooooo proud of him.
God willing, we can keep him at an even keel, especially if we have to adjust his medications.
We’ve had a few bumps in the road but with a few minor adjustments, he’s doing really well. I’ll let you know what happens. 
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Permanent link to this article: http://lostandtired.com/2013/06/12/the-waiting-game-2/
Jun 12 2013
While I was originally really stressed out and worried about rescheduling Gavin’s day at the Cleveland Clinic, it’s actually worked out for the best.
I have the appointments rescheduled already and this time there’s only an hour between each one.
This will work loads better for Gavin and it’s only 2 weeks out. This is a really good thing and I feel much better now that it’s all figured out.
Later on I’ll share what happened at our wraparound meeting this morning but right now we have more pressing matters.
Gavin has an emergency appointment with Dr. Reynolds and this is really important appointment because it appears that Gavin is inside of a psychotic episode and we need to address his meds ASAP before this gets any worse.
Historically, when this has happened, it goes downhill rapidly and he ends up in the psych unit at Akron Children’s Hospital.
I’m so desperately praying that A) we’re wrong, which I don’t think that we are, or B) we can correct what needs to be corrected and pull Gavin back into reality.
This is a topic that is very difficult to understand unless you have experience with it. Please rest assured that we are doing everything that can possibly be done. This is one of the reasons we were trying to get Gavin into residential treatment.
With Gavin, reality and fantasy has always been a very, very fine line. At this point, that line is at minimum, blurred, at worst, broken.
Please keep Gavin in your thoughts and prayers today.
Thanks
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Jun 12 2013
I’m a few minutes early for our wraparound meeting and so I thought I would let you all know today’s topic. It should come as no surprise that today’s topic is Child Protective Services.
Our wraparound team consists of a family life specialist (I think that her title, if not I apologize), our wraparound coordinator, our case manager, Gavin’s teachers, the school principal and our DD representative.
When something like what’s happened to us, happens, this is a great team to have on your side.
I will basically bring everyone up to speed and we’ll figure out how to best proceed from here. I’m looking forward to getting everyone’s input….
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Jun 12 2013
After way too much though and a bout of stress induced indigestion, we have decided what we are going to do with all the appointments we have today.
I don’t know how to express just how stressed out I’ve been over this today because each appointment is important but in the end we simply couldn’t pull them all off.
We’ve decided to reschedule his appointments with the Cleveland Clinic for a few reasons.
For starters, we’re having car trouble and Lizze is still not feeling well. The other thing is that we would end up with about 3.5 hours to kill, in between appointments at the Clinic.
That’s a lot to ask of Gavin for what amounts to an appointment that isn’t exactly mission critical right now.
At the moment, we are significantly low on resources and so we have to triage these things. It happens and we have to just move on.
Part of what has me so worried about this is the fact that we’re currently under investigation by Child Protective Services for a claim that we aren’t taking the boys to their doctors appointments and here we are canceling and rescheduling this one.
I know the claim is a spite call but it doesn’t make me feel anymore comfortable with having to make this decision.
This is yet another one the many situations we face where we have to choose from a list of terrible options. We have to pick the one that will least negatively impact our family. It sucks but it’s the reality we live in.
Because of our new found fear/paranoia, I will call the CPS investigator in the morning and explain what’s going on.
Do I need to really do this? Truthfully, I don’t know. I just figure it’s better coming from me than someone else and when it comes to our kids, we don’t take any chances.
So at this point, depending on how Lizze is feeling in the morning, I may or may not being going to our wraparound meeting on my own.
I’m not happy that we had to make this call. Having said that, I stand by our decision and take full responsibility for having made it.
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Permanent link to this article: http://lostandtired.com/2013/06/12/this-cps-investigation-is-really-taking-its-toll/
Rob Gorski is a husband and father of 3 boys on the Autism Spectrum. Gorski began his writing career in June of 2010 with his multiple award winning blog Lost and Tired: Confessions of an Autism Dad. Recently cited as the 3rd most influential Autism Blogger on the internet by Dr. Oz's Sharecare website, where he is an expert on Autism.
His mission is to create dialogue, spread Autism Awareness, educate the public on how technology can benefit a special needs family and do so in ways that society can relate to and understand.
Gorski advocates for special needs families and those on the Autism Spectrum, both young and old.
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