Tuesday, March 12, 2013

2nd opinion pdoc appointment

At the appointment it was Dr S (Who is the medical director) along with two residents. It was well worth the trip as he had new ideas. It went well. He spent 20 minutes going over his developmental, behavioral, medication, diagnostic, family and other histories. Then 20 minutes with Honeybunches alone. Then another 20 minutes with us going over his recommendations. Amazingly Honeybunches did really well in there alone. I was nervous how that part was going to go, but agreed to try it.

Dr S believed that Seroquel was just as bad metabolically as Abilify so he didn't understand that switch. He actually thought that out of the atypical antipsychotics Abilify was one of the easiest on the liver, but he made it clear he did NOT think Honeybunches should go back on it. He said he'd recommend to do things with a three step plan as follows:

Step #1: See how he does with out any antipsychotic on less medications, by taking the Seroquel away and not replacing it with anything. (Which would just leave him on Clonidine, Tenex and Lithium). (He suggested this because of his "Fatty Liver" as the antipsychotics are the most likely cause.) I told him about the man in his belly who used to make him do bad things. He said because Honeybunches's older now it might not be an issue. He noticed Honeybunches doing the lip thing, which he believes might be TD or might just be part of his Autism. (Interesting, because Cogentin helps it, but this doc said it doesn't make true TD go away, because it would always be there even when coming off the offending med... I found that interesting too...)

(Hahaha... I can see suggestion #1 lasting only a couple days probably so that would be a very quick trial.) I think I'd trial that on a weekend or during the week of from school coming up in April, if the pdoc agrees.

Step # 2: If he can't handle #1, then add in a 2nd mood stabilizer such as Depakote, Tegretol or Topomax. Those are the three he suggested. I mentioned how I didn't think Tegratol would be a good idea because of his negative reaction to Trileptal. He said although they are cousins they are different so he should not have the same reaction.

Step # 3: If steps 1 and 2 don't work he said he'd suggest adding in a low dose "Old fashioned, conventional antipsychotic". The three he mentioned were Haldol, Perphenazine and Prolixen. He said although they do carry more of a risk with Tardive Dyskinesia, they'd be easier on his liver. He said just using a low dose of one of the old ones could be equivalent to the "High amount of Abilify he was on previously". He said the old ones take a fraction of the dose to be just as or more effective.

He said that the fatty liver is life threatening while Tardive Dyskinesia would not be. He believed that Honeybunches's ADHD, Generalized Anxiety Disorder, Receptive-Expressive Language Disorder and even possibly his "Mood liability" from the "Mood disorder" all could be related to his Autism Spectrum Disorder. (Notice he didn't mention BP and was surprised when I told him how Honeybunches was diagnosed with it at age three.) I asked him if children with Autism get suicidal. He said "No". Then I asked him about if he didn't have Bipolar would Lithium still work. He said it might. (I don't agree with him about the Bipolar being part of the ASD, but do agree with the ADHD, language disorder and GAD possibly being part of it.)

I wrote to his regular pdoc to see what she wants to do. I told her I trust her judgment a lot more than a doctor who only spent one hour with us. (No more than an hour as he was very strict on the time limits steady looking at the clock, which I hate.) I appreciate the new insight though.


I signed a release so Dr S can send a copy of the report to her too. So I'll see where this goes from here. It was good to have new ideas. The pdoc he sees regularly thought that the old APs would be worse for their side effects, which seems to be opposite thinking than this doc had. She made it pretty clear before that she didn't want to touch the old ones. I was surprised that he mentioned 2 mood stabilizers, but he said some children do really well with two instead of an antipsychotic.

So I guess now I just wait and see what if anything his regular pdoc wants to do. While I am waiting, I can wait to see if DCF comes to pay us a visit. While alone, Honeybunches disclosed some old info about Shnooks doing something inappropriate to him. DCF should have it in their file, because it was years ago (2007-8ish) when I told them something might have happened, but they blew it off because they said Honeybunches was not an appropriate child to interview, gave Shnooks a screen which showed he was at low-risk to offend and did nothing. Technically, I believe that this doc has to file a report anyways, although I explained what I knew (Plus how we were not exactly sure if anything did happen with Honeybunches) in detail. I don't want to go into too many details about that, but Honeybunches didn't talk about it since 2008 until last week when we were driving down the street. We seen Shnooks. He said "Whose that? Oh yeah the boy who _____". :( All I can say is I know we made the right decision not letting that boy back into our house. I'm glad he left in 2010. Sometimes I am mad at DCF for pushing for us to take him back in 2008 after I disclosed what Honeybunches told me back then. Shnooks was in their custody through a CHINS, at an RTC which closed. They should not have sent him back here. We never should have taken him back. Oh well, I know we tried to give him a good life. So I think the doc probably did file, if for no other reason than to be a good example to his residents.  Hopefully it will only go as far as DCF's desk, because it should all be in their records plus we haven't had contact with Shnooks since the Summer of 2010. 

On another note, the Seroquel seems to be giving Honeybunches symptoms of the Tardive Dyskinesia again.  School told me this morning that yesterday and in the few minutes he was there today before they called me, that they noticed lip puckering like he was going to blow a kiss and holding it there. I wrote to his pdoc, who got back to me quickly and put him back on Cogentin.  That's one thing I love most about her.  She always returns my calls or emails quickly. 

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