Trying to a DX...

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Registered: 03-26-2003
Trying to a DX...
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Sat, 05-06-2006 - 2:18pm

I have posted her a few times about my 10 y/o son Joiner. He is officially DXed ADHD,Bipoalr, ODD. He has LOTS of Aspie traits, and the ODD I don't fully agree with. He stands his ground, is not afraid of authority, refuses ot do school work (mostly because of his handwriting problems), and gets angry. I think most of his problems at school are from frustration. the shcool says Joiner is a smart kid, he knows what he is doing.


I want a correct DX. So how do we do this? IF he has a comorbid

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Registered: 03-26-2003
Sat, 05-06-2006 - 7:52pm

HI Kathy,

Mike is a tough guy to peg like Joiner I think. His main diagnosis is autism spectrum but he isn't a typical aspie and he has features of OCD, tourettes, bipolar, etc.

2 things. First, we are doing something similar like you mentioned in the Marcus Institute. Here in California they have the Diagnostic Centers. There are 3 in the state and they are available through the school district for those kids like this that are just really hard to figure out and plan for. Our district has approved it and we have sent in the referral, we are just waiting on approval and that stuff. It takes a while is my understanding.

Next, our clinical psychologist says that in the DSM they take the main diagnosis where the child falls and then everything else really falls underneath that. According to her, comorbids really shouldn't be diagnosed according to the DSM. It is a matter of finding what the most pertinent dx is. However, you still need a full picture of a child to know how to treat them. That is why we are going to the diagnostic center. At this point I don't care what you call it. Tell me what to do about it.

Have you ever heard of the Amen Clinic? They have one here in LA area. My understanding is that they do this incredible brain scan and can determine exactly what is going on and what meds are needed. It is like $3000 but man if it doesn't sound tempting.

Renee

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Sun, 05-07-2006 - 9:55am

Hi Renee. Don't you question yourself daily

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Registered: 03-26-2003
Sun, 05-07-2006 - 10:57am

Kathy,

I question myself daily as well. And it would be totally nice if those scans were covered by insurance. If there were some way of saying, here- this is what you need to do first.

We are making progress but it is slow but sure. There are so many times I wonder if he will be independent at all and just don't know what to do to get him to that place. I saw a news report the other day where some guy was shot by the police because he kept waving a gun at them and wouldn't put it down. It scared me because I know if Mike ever got himself into a situation like that, even if he didn't have a gun, he would likely not listen or even comprehend what the police were saying to him and wouldn't comply and get hurt.

The therapist thing, that is what happened to me. On and off I have been asking about Mike and what is going on. Finally one day she brings up that Aspergers doesn't seem quite accurate for Mike. He is more significantly impaired/involved than many AS kids she knows. However I still can't pin her down on an actual diagnosis. The best we have is somewhere on the autism spectrum (because that is his main area of disability) with lots of features of other disorders that are significant including BP, OCD and tourettes.

She calls him an alphabet soup kid. Since when is THAT a diagnosis. She totally agrees with taking him to the diagnostic center. He will likely just get an autism/HFA/As type diagnosis because that is his main area but hopefully the report will be indepth enough that we understand him better and know what to do.

Renee

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Sun, 05-07-2006 - 11:25am

Ya know, I know several boys like this in my area, And have talked to several mothers who have kids (mostly boys)

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Sun, 05-07-2006 - 4:49pm

I have heard of alot of these kids as well. Some have multiple diagnosis, some just one. It seems like so many kids now have dual diagnosis of ASD and bipolar. It is like a new type of diagnosis or something.

Mike is definitely autism spectrum mainly. He has the traits, almost all of them and he gets more autistic the older he gets. He may even hit all the traits now. But there is the outbursts, aggressions and mood changes, the OCD tendancies (handwashing, not stepping on cracks) and the tics.

Medications haven't worked. We have finally made progress this past year using autism type interventions. But there is so much more. There is another piece and I wish I knew how to address it.

The biggest problem we are having right now is when he withdraws into his own head. He can even become loud and and angry or hyper but he looks right through you and you are not there. Trying to get through to him when he is like that is so hard. Lately his behavior is better but he is spending more and more time withdrawn into his own head. It is like you have to yell or do something crazy just to break through the monster wall. Even when he is talking to me conversationally it it like he is not fully there. I am tired of talking to walls and spending so much time trying to crack through them.

Renee

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Registered: 09-17-2003
Mon, 05-08-2006 - 6:25pm

Hi Renee and Kathy,

I have an alphabet soup kid as well. He currently has a dx of BP, Tourette's, Conduct D/O, Anxiety D/O and some emerging psychotic disorder. FWIW we have had the brain scans done. Rod had them done as part of a research project on BP kids, we also had the genetic testing done on him. We know where and what his brain is not doing right, but no one can tell us what we should be doing to try and fix the problems. We just have concrete evidence that I'm not really a bad mom. Rod also has alot of spectrum traits, but has avoided the dx because we aren't sure if they are an issue on their own or just a byproduct of one of his other dx's. There is so much overlap and even when you have all of the testing done it still comes down to someones interpretation of the results. It has been my experience that whatever disorder the tester is most comfortable with is usually the one that gets the most attention in the summaries.

We still do all of the testing every couple of years because when these kids are growing and maturing things seem to slide all over the place. I think that it is more important to just work throguh the issues that you are seeing at the moment and not worry too much about where these issues fit into the dx. The best way I have found of pinpointing the problems is to keep a journal. Sometimes it is hard to see what you are looking at in the moment and it helps to go back over it all with a bit of distance. Every couple of weeks I would go through my notes and start to see patterns, what he was doing, how I was reacting and what the outcome was. It really helped me to see what I was doing that wasn't working as well.

I think that with some more time and research the professionals will be better able to put a name to what we are all dealing with here and hopefully some better strategies for how we are supposed to deal with them. Until that time we are just stuck muddling our way through.

Kathy, if you are going to take Joiner off his meds to do the testing I would seriously consider having a Plan B in place. We have taken Rod off his meds and it has just gone really badly sometimes - other times it was manageable but it never hurts to be prepared for the worst. Also when Rod is not on his meds the testing takes forever and is pretty hit and miss if they will actually be able to get him to cooperate or not. It's great for observation but not so great for testing that requires participation. We have hit the point now where we DON'T take Rod off his meds unless he is in a really secure facility. Of course he is 15, pushing 6 feet and over 180lbs - so I have absolutely no hope of being able to control him at all. Yeah - I'm vertically challenged and kind of puny.

Just wanted to let you both know that I sympathize and empathize and all of those other "izes".

Hugs
Beverly

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Mon, 05-08-2006 - 7:17pm

Thanks Beverly. I understand having a plan B. I would definitely have Abilify on hand