Spect scans and medication question

[Shari]

I haven't posted a lot lately, either my own threads or response to others because wee difficult child has been very, very "off" for a month or longer.

I would say he qualifies as manic. Even sleep patterns have changed.

A few times, we have had to use our emerency PRN medication to knock him down. Except we are finding that its not working. When he's like this, the sedatives aren't even phasing him - what normally knocks him out for 14 hours at a time doesn't even slow him down.

Anyone else experienced this? Is it indicative of anything?

Also, kinda along these lines, I've heard of SPECT scans. My mom has run into a clinic that uses the SPECT scans to determine what parts of the brain are "running too hot" and what parts aren't. They don't diagnosis from it, but they do use it when thinking thru medication combinations. Has anyone heard of this? It actually makes some sense, but then again, i'm desperate for answers and help, so...

 

[smallworld]

What medication are you using for a PRN? Sometimes they do poop out, and you need to try another one.

I know a few posters here have used SPECT scans so I hope they will chime in. We've never gone that route, largely because it's expensive and our psychiatrists felt neuropsychologist testing was more beneficial.

 

[Shari]

We use clonodine or tenex for our prns. "Normally" 1/4 of a clonodine tablet or one Tenex tablet will knock him out cold for 14 hours. We originally tried them in minute doses to try to calm him down, but we could not titrate the dosages low enough to not knock him out - so they became our PRN's. Except now they're doing NOTHING.

 

[smallworld]

Risperdal, Seroquel, Zyprexa, Klonopin and Ativan are all used as PRNs. Since Tenex and Clonidine are doing nothing, you might want to check in with your psychiatrist about another option.

 

[Shari]

We are looking into another PRN, but we've noticed that when he's so far off, like he is now, is when the drugs don't affect him. Like there's maybe a tangible chemical aspect to him being "off" that makes the drug react different? Just wondering if that's another piece of the puzzle that means anything.

 

[klmno]

I wonder if he's on the wrong type of medication altogether, then??? What does psychiatrist say about it? Have you listed (for yourself) the types of drugs he's tried- ie, SSRI's, AP's, stims, and then thought about what hasn't been tried- MS, anti-anxiety, etc?? I used to think I could expect psychiatrist to cover all that, and although I thinkk difficult child's psychiatrist is very competent and attentive, I still find that I have to do my homework and get advice from the board and just go in proposing things or wording things differently to stress my concern more in order to get psychiatrist to see thinggs the way I see them sometimes.

FWIW- My son takes depakote and lithobid, but I can guarantee you that the lithobid is really doing the most for mood cycling. Depakote wouldn't even come close to doing what the lithium does. difficult child can function on lithium alone, albeit he has symptoms still that interfere with normal life. He cannot function without lithium, or possibly another of the old "tried and true" MS's.

I don't know about the spect scan, but I'm one who's willing to allow any non-invasive test if I can afford it and if it can help difficult child or other kids/families and if it doesn't have strong potential for making things worse or causing difficult child psychological damage.

 

[butterflydreams]

Shari, my son's psychiatrist used a SPECT scan after difficult child was on medications that he felt should work and he got worse. Our psychiatrist has been specially trained to read the scans, he is the only psychiatrist in our area, from what I know. He uses it to see where things are "hot" as well. Basically what he told me is that it is not exact but, that they can see patterns in brain activity that are typical in certain cases, like areas of the brain where ADHD or ADD typically are present, they can also use it for like Alzheimers, etc. He had told me that he saw signs in difficult child's brain that were typical for ADD and also bipolar. Basically it just confirmed where his diagnosis thoughts were going. He does NOT use it in every case. I know a nurse in my internists office who's son had gone to the same psychiatrist and he had the SPECT done too, it showed where there was issues in the impulse control center.

I do have to say that alot of the psychiatric community does not believe in the use of them, but as long as it isn't the ONLY source of diagnosis, what can it hurt?

That being said, I think if you have the opportunity to have one done, I'd do it as another form of diagnostics for your difficult child, just keep in mind that it is fairly new.

Good luck,

Christy

 

[Nancy423]

We had 2 scans done many years ago. Our doctor was trained to read them as well. It is actually very interesting to look at. Our doctor said my difficult child has a kind of "alzheimer's" in a way because of how the brain activity looked. They could also determine where the activity in the brain comes from. In difficult child's case, it's not active where it should be and vice versa (too active in other spots) possibly meaning that parts of her brain aren't developed/damaged and the other parts are taking over.

However, no other psychiatrist could understand the results so it wasn't a very effective tool to bring elsewhere. Didn't have it to show to the neuro tho - maybe they'd be able to see something?

My insurance did not cover it and we paid out of pocket (in desperation)

 

[pepperidge]

Shari,

we had them done on both our kids several years ago, out of desperation. no psychiatrists we trusted or knew about in 200 miles, Adhd and depression were the diagnosis offered and medications offered, but weren't working, etc. So we went for the scans as much for the psychiatrist medication expertise, which was terrific, as well as trying to understand better what we were up against.

What we got out of it was a a medication plan, try a, then b, etc in a very orderly way, and got things dialed in relatively quickly. I was interested to know as well whether there was observable brain damage from prenatal alcohol issues. The scan showed that there was not major damage--which doesn't mean that there wasn't damage, but at least there was not horrific revealed by scans.

I must say that I have trotted out the the diagnosis along with the brain scans at my kids' IEP qualifying meeting and got an OHI classification without any question.

My kids were clearly not on the autistic spectrum. I guess one question to ask would be if yours were how would that show up in the brain scans, if at all, would it be distinguishable from bipolar diagnosis etc.

I also think that in the next five years or so the use of some form of brain image, EEG type stuff correlated with large scale medication response data bases will be much more common. There is much research going on in this area.

If you go for the scans, make sure that your consultation is with a psychiatrist that is very very knowledgeable about scans and about medications both.

pepperidge

 

[Shari]

Thanks for the replies and input.

Pepper, the medication route is why I am even looking at this. With the negative results of most all the medications we've tried, and no concensus on what we are even treating, if someone can look at his brain and see what's working too much and what's not working enuf, perhaps that could be used to target medications that may help? I don't know, but that's my thinking.

I'm also trying to get him into another multi-disciplinary evaluation - whole new state if I have to.

Was talking to ex-mother in law tonight. Her vote was supportive but sobering. She was a teacher and school counselor for years. She retired about 8 years ago. Wee difficult child is a cookie cutter of his bio father's behaviors. She made the comment that his father had the luxury of small town america, mom in the school system, and a forgiving society; had he been in the system now, he would have been in an institution of some form or another. And she feels wee difficult child is heading down the same road if we don't make some remarkable progress soon. And his docs here are mostly stalled out. Not all, but most. So, anyway, a sobering thought, but they are behind me 110%. So, on we press.

 

[smallworld]

Shari, does biodad have a diagnosis today?

 

[Shari]

No, but he should have.

Guess I should clarify that his mom (ex-mother in law) is about 2 credit hours shy of a masters in psychology, and she's the biggest member of the "he's un-diagnosis'ed something" camp.

difficult child 1's psychologist and MD, who neither one ever saw the other's reports, both made comments off-hand at different times that bio-dad (they both met him) was a classic case of narcissistic personality disorder, and suspected more.

difficult child 1, now that he's on his own and married, talks about being BiPolar (BP) and freely admits he thinks he does battle it. He's making it without medications, but his wife has already chatted with me about his mood swings. Time will tell.

 

[Shari]

He was Learning Disability (LD) and BD in school. That's about all they had then. He was in the jeuvenile system for violence against his mother, among other things, all thru his teen years, then they sent him to the army (where he was a very good soldier, but was booted because he was unable to be a law-abiding citizen). The only reason his parents didn't put him in an Residential Treatment Center (RTC) was because some of the "experts" then said his problems were because he was adopted and that would only make the situation worse. In hindsight, they wish they'd have put him in an Residential Treatment Center (RTC).

He was discharged early from the army, and his commanding officer told his parents that in war, there is no soldier they would want more than him. As a civilian, he was worthless and they never wanted to see him again.

He can't keep jobs, his mom handles his money and gives him allowance, he lives in their barn, and would be in prison if they hadn't bought his way out (not one of their finer moments, in my humble opinion, but I digress - their choice, not mine). Their other two children (not bio related to this guy) are community pillars. Community service professionals (high ranking, at that), church president, stable marriages, responsible citizens in every way.

 

[pepperidge]

could biodad have had some fetal alcohol issues, along with mood issues? sounds possible from description of dad.

out of curiousity, have you tried abilify? only medication out of about 16 that made any positive difference for my youngest.

 

[Shari]

I am trying to think - what classification is Abilify? We havne't tried it, but I am thinking there was a particular reason we avoided that one.

Ah, its an AP. He's on Risperdal now, which generally works for him, and even still, if we skip it, we can tell it makes a difference. He's just off the wall in every way right now.