psychiatrist appointment FOR the difficult child's WITHOUT the difficult child's.

gcvmom

Here we go again!
Okay, technically, it was for difficult child 2 since difficult child 1 had been pulled in last week because of his escalating beligerence at home, so he really didn't need to be there again so soon.

And just when I thought difficult child 2 would be safe to take to the appointment since his fever was normal all morning and at lunchtime... I took his temp at 4pm just before we were getting ready to leave for the appointment and it was back up to 99.9. And he was coughing more. :( So I went alone and left husband to pick up difficult child 1 from lacrosse practice and hold down the fort for the evening (he survived).

We discussed difficult child 1's slightly improved irritability since starting Tegretol last Friday. husband says he's not as prone to pushing/provoking us, and backs down from an argument sooner than before. And he's been less violent. So that's all good. But it's still not ALL good, yet. He is still emotionally fragile (started crying last night when I got on his case for lying to me (again - oh, big surprise!) about homework and skipping lunch), he is still very impulsive (see the lying comment), and he is still fairly irritable as kids his age go. Those three pieces improving within the next week or so will tell us if Tegretol is doing what it's supposed to do for him.

difficult child 1's personal observation is that he feels a little tired from the medication and slower (although I don't see this, it's probably more an internal thing for him). He said he feels like something is pressing down on him -- but couldn't elaborate. We think it has to do with maybe the sedation, or possibly his impulse control? Time will tell. He'll probably need to go back by the end of the month or mid-March instead of waiting our usual 3 months.

Then we discussed difficult child 2, how his window of stability seems to be pretty narrow and easily thrown off by things like sleep, level of novel excitement in his daily life, and stress. Over the holidays he got fairly hypomanic for a week or so and then settled down once we got back to the structured bedtime/school schedule. I told him how I'd observed these little blips of increased hyperactivity and agitation every so often, as well as his recent need to sleep around 5pm (this is way before his flu bug this week) -- he would get home from school by 4 or 4:30, be bouncing off the walls and telling me his head was buzzing "a little" and then want to go sleep at 5:00 for an hour or two -- before even starting homework!

So psychiatrist is concerned about overall stability not being that reliable yet. If after he's recovered from this flu bug and I continue to see these blips over the next two or three weeks, we'll check his Depakote levels again and then decide what to do from there.

We also talked about how the Namenda is working for his focus and attention -- which is better overall, but still has a lot of room for improvement. psychiatrist said we're already at the highest level he'd be willing to try, so now.... (drumrolllllll) We're going to experiment (and it is truly an experiment) with Intuniv (long acting version of Tenex/guanfacine).

And I got a pretty good lesson on why this might -- MIGHT be helpful for his focus/attention. And also why it might be very bad for his bipolar disorder if it turns out to not work the way it's supposed to.

According to the psychiatrist, (and hopefully I'm translating this right), there was a Yale study that showed Intuniv works on norepinephrine receptors by actually mimicking norepinephrine rather than increasing the levels like other medications do, so it doesn't amplify the signal, it just helps the flow of information go more smoothly. AND it appears to ONLY affect the receptors in the prefrontal cortex (which is the big bad zone that impacts pretty much everyone with ADHD/executive function issues), unlike other norepinephrine-influencing drugs (like tricyclics) that mess with the norepinephrine receptors in the limbic part of the brain (which is the big bad zone that impacts pretty much everyone with bipolar disorder).

For a kid at difficult child 2's weight, he said the usual dose for improving focus/attention issues would be 3mg. BUT it would not take that much at all to mess him up if it impacts his bipolar disorder. So we're going to start out at 1mg instead -- low enough to know quickly if it's going to have a negative impact. And if nothing bad happens, we'll work on titrating up.

See why I love this guy? ;)
 

LittleDudesMom

Well-Known Member
Hey Chickie,

I love the time I get with difficult child's therapist!! I always go in first and chat with her. She always asks how I'm doing, what's going on, how easy child is, etc. After talking to her for 10 minutes, I feel like I've had therapy!

It's also nice to be able to really talk candidly about our difficult children!

Glad it was so informative and positive an appointment!

Sharon
 

DaisyFace

Love me...Love me not
Wow!

What a great doctor! Sounds like he's really on top of things for you and your family.

(Where can I get one like that...?)

--DaisyFace
 

totoro

Mom? What's a difficult child?
Nice~
This is how they should be. I hate hearing stories how a psychiatrist is abrupt, asks how the medications are working, "Do you need more?" See ya!!! 10-15 minutes if that!
90$ or so...
Last apt. K was huddled behind psychiatrist's chair but it was finally the first time she really opened up to her. We weren't in the room yet. We rotate each apt if we are in there with K or alone after K talks to psychiatrist 15 minutes or so. Some apts are 30 minutes to 1 hour.
I hope this medication works for him.
 

smallworld

Moderator
How much Seroquel is he taking? Is there any chance it's making him inattentive rather than ADHD symptoms? We had that problem with J.

Or is it possible that mood symptoms rather than ADHD are making him inattentive? I just worry that messing with a lot of add-ons might really mess things up.

I've heard anecdotally that you really have to give Intuniv a chance to kick in. Parents on message boards and listservs have reported that initially their kids haven't done well, but then settle down. Just wanted to warn you.
 

gcvmom

Here we go again!
SW, he takes 600mg XR at bedtime and 500mg XR at lunchtime. If he takes any less, he gets worse -- starts spinning out of control. If he takes any more, he's a lot more sedated -- we shuffled the dosing because he was too sedated in the morning, so we shifted some away from the pm dose over to the lunchtime dose -- this has helped. But he still has trouble figuring out what's most important to attend to in class and subsequently misses some things, is still forgetful (though this has improved).

The psychiatrist thinks we should know after a week or two if the Intuniv will cause any problems. Did the people you know who tried it see just more of the same problems before the medication kicked in, or was it an actual worsening of symptoms?
 

smallworld

Moderator
Some parents I've "talked" with online actually saw a worsening of symptoms before things improved. Are you a CABF member? If so, you might want to post over on the CABF message board to hear some first-hand accounts.

I know you said difficult child 2 is a fast metabolizer, but your son is on the highest dose of Seroquel of any kid I know (not personally, over the internet). In your shoes, I would be concerned about it, both in terms of side effects and in terms of cognitive effects (not permanent). Depakote can also cause cognitive dulling. Rather than adding medication on top of medication, you might want to be looking at improving his overall mood-stabilizing cocktail. I know you like your psychiatrist, but sometimes it takes either pushing the psychiatrist to look at new ideas or having a fresh set of eyes take a new look. We've had to do this more times than I care to count along our very long psychiatric journey with our kids.

I could be all wet, but this is just how I see it from where I sit at my laptop.
 

Shari

IsItFridayYet?
That's good info!

I'm going to take your info and talk to Wee's doctor about the Intuniv. He's already mentioned it but wanted to try it on some other "less complicated" cases first.

In the meantime, I hope it works well for you and difficult child. Sounds like there's at least a chance.
 

gcvmom

Here we go again!
I appreciate your concern about the Seroquel dose, SW. Overall, it's really helped him. He has not gained weight on it. His metabolic numbers are all fine on it. He is not overly sedated on it. And unlike the other AP's we've tried (Risperdal, Abilify AND Zyprexa), he has not developed a dystonic reaction. It helps his hyperactivity. It even helps his focus and attention, just not as much as we'd hoped. Combined with Depakote ER (of which he takes 1000mg), it's had the best impact on the mania/hypomania symptoms for him. I don't know what psychiatrist's plan is if we continue to see the hypomanic blips and then find out his Depakote levels are fine. I don't think he would suggest increasing the Seroquel XR because going higher has shown to be problematic.

I agree that the Depakote ER HAS affected him cognitively. He's been on this longer than the Seroquel, and I noticed it from the beginning. When you add to that his remaining ADHD-like symptoms, things that came easily to him before BiPolar (BP) emerged are now a struggle. And this may ultimately mean that we have to move him back to general ed from the honors classes he's in -- but I'd rather see that than risk starting over again. It's taken us so long to get here and during that time I think he missed out on a lot of things... that's why I'm willing to give this Intuniv experiment a try.
 
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