Here is where we stand…

Here is where we stand…

Dr. R is out of town on vacation this week. We met with his main nurse practitioner. Gavin is clearly delusional there is no arguing that. What she thinks is happening is the anti-psychotics haven’t had enough time to work. We just increased the dose about a week ago. Gavin typically responds quickly to medication increases or changes but maybe it’s just taking longer. She thinks that we are just seeing the schizoaffective disorder right now because it’s not properly medicated.  Hence the “seeing things” that aren’t there.


She could not advise one way or the other as to whether or not the Cleveland Clinic is needed because she hasn’t seen Gavin since last year. She also doesn’t want to mess with his medications until Dr. R gets back because of the increased risk of the Paroxysmal Choreoathetosis coming back. So right now we have to wait. It’s honestly frustrating cause I feel we are no better off now then before. If this is truly just the schizoaffective disorder then there is nothing to “really” worry about right now. We just need to find the right meds. However, if it’s delirium then that could be a different story all together.  So basically we have more questions then answers.  Unfortunately, this is par for the course in our world. Rarely do we EVER get a straight answer.  We see Dr. Patti on tomorrow and we’ll see what she thinks. Maybe talk to his pediatrician and seek some more advise. Getting Gavin into a place like the Cleveland Clinic works much, much better when everyone is on board. At this point we have to wait until we have given the meds enough time to help. At least another week or so…..sigh


Thanks for all the prayers


-lost and tired

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Lucia alonso

Have u ever considered homeopathy for your children? We have been doing homeopathy since November of 2010, (we were doing biomedical before this) and have seen great results. Please if u find the time read about, it's worth it and I am positive it could help your boys. Best of luck to you and your family.

Lost and Tired

Thanks for the advise and well wishes 🙂

Mom W

If you think Gavin's condition is deteriorating in any way, don't wait for Dr R, take him to the ER. It just worries me that he may be experiencing delirium. It is progressive, so if you notice that he is getting worse, take him right away.

Love Mom

Lost and Tired

I promise you guys we will ensure his best interests. We always do 😉 thanks for worrying though…..

Aunt Sharon

I certainly hope if you need to you'll take him to Cleveland Clinic emergency where they'll have to see him with or with out out the Dr.'s referral. I see that things would work better if everyone is on board. Just follow your instincts

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