Behavioral Crisis: Update 07/24/2012 (3pm)

I spoke with the hospital twice this morning.  Gavin is doing pretty well but is very easily frustrated.

At this junction there is now external plans in place and Gavin will likely return home in the morning. 

Having said that,  we discovered something concerning today.  While speaking with the nurse on the phone this afternoon,  we discovered that there appears to be some sort of metabolic issue. 

She mentioned that they’ve checked his medication levels and that while some were too high,  they were still okay.

I asked her for the levels and realized we had a problem on our hands.

Gavin’s lithium levels,  which have remained at .7, basically since we hit the current dosage,  at least a year ago, is now 1.3.

This is the absolute highest it can be allowed to go.  This is concerning for a number of reasons but mostly because his dosage hasn’t changed in a very,  very long time. The other major concern is lithium toxicity

They said that Gavin shows no signs of toxicity at this point but that things to look for are seizures,  nausea/vomiting,  unusual sleepiness etc. You might be asking yourself the same question I was when I heard this.  Wait a minute,  Gavin is having seizures,  sleepiness,  nausea and vomiting

They weren’t aware of the symptoms, aside from the seizures.  She said that Gavin had denied having these symptoms.  I told her that’s because he’s either not being truthful or he doesn’t understand the question,  probably the later.

When you ask Gavin a question like that,  you have to be very, very specific in your wording.  Otherwise,  he will just say what he knows you want to hear,  especially when he doesn’t understand the question.

I asked her if an autonomic disorder could affect his metabolism to the point where this would happen with his meds and she said absolutely.  Especially if we’re dealing with things on a mitochondrial level. 

At this point,  the lithium levels appear to be secondary to the autonomic issues. That means that basically,  he’s not metabolizing things correctly. 

This was an important catch because unless you looked at his previous levels,  you wouldn’t have noticed the changes. It would have been assumed that his dosage was too high.

I don’t know what this all means but they are going to address the levels and consult with neurology and Dr. Reynolds,  his prescribing doctor. To be safe,  they have cut his dose for tonight so that things don’t get any worse. This is going to make medication management extremely difficult going forward.

**Thanks for reading**

       -Lost and Tired

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Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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In realty on to co-morbids of metabolic and immune function.

Michele Nichols on F

In realty on to co-morbids of metabolic and immune function.

autiesmama

We dealt with the lithium toxicity/therapeutic balance with my mother for many years–it is quite a tightrope, isn't it? And you needed another one of *those*, didn't you? Good Lord.
I am sure that someone has addressed this already, but it occurs to me that Gavin is most likely near or in puberty–might there be a pituitary misfire, or simply increased hormone levels that are exacerbating any of his other issues? I know there's no simple way to answer that, but hormones levels/changes are often overlooked in the grand scheme of things. I seem to recall that testosterone affects metabolic issues pretty directly, but as I'm sure you know, it becomes a rather circular treatment issue–where does what begin, and why? And then, which, or what to treat first? And (I believe, but am not sure) that a hormone panel is rarely done unless expressly requested. I am sorry, Rob–I'm repeating myself when I say it, but I'd ask that you believe it every time I say it– truly, you are doing the best you can and it's pretty damned good. Your wife, your younger sons–they're safe. You know that Gavin is being monitored in a safe place–that's pretty amazing, right there. Perhaps you will be better able to focus and assess the situation while he's not quite so immediate and present. It's okay to let that be a positive thing. More than that, your family may come out of this episode far better equipped to handle Gavin-related issues in the future.
You'll get through this, that's about all we can say for sure, I guess, but at the very least, you'll get through and I'd hazard that you'll come out better equipped than when you started. Not bad, if you think about it.. Regards, Leslie
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DAnielle

https://www.stopcallingitautism.org/autismimmuned

we are not crazy, there is something wrong with our kids and its not Mental…..its medical. You are starting to see it now. My Autistic son had high levels of Ammonia and other nonscense that did not belong in his blood or brain. I didnt go to some Developmental Ped. or a chiropractor i went to a regular MD who after reading all these crazy labs had to detox my son of everything…..he now also had a vaccine exemption because of medical issues. While i dont think vaccines cause Autism, i think our kids have serious medical issues that can be made worse by enviormental factors. I know all this stucks and our prayers are with you but I know you guys dont have tons of options left, try a detox and some supplements, it might make a world of difference

God Bless

Lost_and_Tired

I totally get your point but it would be grossly irresponsible to assume that this applies across the board.

In Gavin\’s case, the aspergers predates the health and Medical issues by 6 or 7 years.

While I agree that this applies to some, it doesn\’t apply to all. Thank you for caring enough to share this and I wish you the very best on your journey. 🙂

Praying for Gavin and your family

Lori Thomas-Carr on

Praying for Gavin and your family

Lost_and_Tired

Thank you Lori 🙂

Jennifer Fury

I hate to say "i'm glad you found a tangible new problem that is fixable", but well I am! I know there is clearly no magic bullet in this situation, but if there is anything that can help your lives improve, I'm all for it. I will keep my fingers crossed that the decreased dosage helps, and that the docs are diligent enough to follow this very closely from now on. sounds like he really needs that
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Lost_and_Tired

Thanks Jennifer. Your right. This issue is fixable, however the cause isn't. Your also right that it will require close monitoring. It's scary to think that we could have missed this.

Thanks for your thoughts 🙂