Where we are right now:
At the peds today with fMhgirl I happened to draw our original ped who cared for the kids as infants (our practice is huge, so for sick visits you get whomever and ditto for camp/school physicals) which was FAB. Because she has a child much like fMhson, she of course she asked after him. I updated her on his progress and mentioned something about meds. She suggested that he might do well on monotherapy with Intuniv. I'm torn.
In the past week
1. fMhson got so anxious he stayed home from an outing with sciDAD and fMhgirl to local kid attraction that he loves
2. at recent Boy Scout field trip his anxiety loop made him so impulsive that he interrupted the speaker constantly to the point that s/he was obviously getting annoyed and we decided he probably shouldn't go to any more outings/field trips
3. I didn't sign him up for spring sport because the competition is getting so serious that his "hyper" activity/impulsiveness aren't going to be tolerated
4. In conversation with friends we were discussing camps, and sciDAD said "fMhson could never do sleep away camp" which is so true with his current state of anxiety(often has to read until 10 or 11PM before able to fall asleep and that is in familiar surroundings!).
* more mundane things not done, haircuts other than at home, so v. bad haircuts, and dentist only once (had to be sedated)
At this point I'm concerned that fMhson is missing out on, well, life. However, we have really really resisted giving him meds, with me just slightly more willing than sciDAD to consider. I'm wondering now though, as he is able to communicate quite well, and can participate in the trials of the drugs, if the time has come. I share many of fMhson's traits, but they did not stop me from doing the things listed above as a child and they don't impede my daily functioning.
I just finished reading the FDA docs (srsly never knew those years of working in a med sch would come in so handy) as well as the anecdotal information from parents on the web. Other than the very rare electrophysiological consequences (syncope, prolonged QT intervals, bradycardia) I'm most concerned about the very very small incidences of agression that I've read about. It is difficult to tell if these are truly attributable to the drugs, because ADHD is often co-morbid with other disorders and many many people use Intuniv as adjunctive therapy to simulant based meds, but it still worries me. The other concern is that unlike stimulant based ADHD meds, Intuniv, which basically impacts the norepinephrine uptake cycle, requires both titration and weaning period, so minimum time on is probably a month and a max time to see efficacy is three months.
update #1: sciDAD has agreed to at least go to the ped with fMhson to discuss meds. Calling today for appt.
update #2 appt scheduled for 1/31
questions: EKG for sure before starting, what about irritability/aggression? Home blood pressure monitoring necessary? Start over Pres. day weekend to assess side effects.
10 comments:
What a tough choice to make. I know that in the past fMh son said no to drugs himself because he didn't want to be like everyone else. Have you asked him if his anxiety and inability to participate in activities will make him reconsider his stance? It really does sound like he is missing out on a lot now and perhaps a trial (with the ability to get out) would be the next thing to try so that he can do things that he enjoys.
thanks for the sympathy. Since the ped is experienced with her own son, I'm going to let her broach it, but yes in general I'd planned to frame it in terms of ability to make good decisions and not "get out of control" which would then let him do some of the things he is sad not to be doing (like Spring sport, playdates at other kids') as well as the constant getting in trouble at school and to a lesser extent at home because he makes impulsive choices
That's really tough. Good luck!
I think if his ADHD is stopping him from participating in activities that would be good for him, then you should at least give meds a try. Of course, I may be biased since my eldest is on meds and it's made a huge difference in his ability to participate in life. He still has social troubles though. But at least his progress report went from almost all "needs improvement" to competence.
For this particular medicine you're talking about, even of it takes a while to kick in and get off, at least it's not an irreversible decision. That was what made the decision clear to me - we could change our mind if we wanted or needed to.
re: anxiety
I did cognitive behavioral therapy for anxiety (in my early 20s) and it totally changed my life. I don't know much about ADHD, but I know the research center where I did my CBT treatment also had CBT for kids. There are specific techniques that help with things like falling asleep (for example, progressive muscle relaxation). I don't know if it would help with impulsivity, but the anxiety part itself it might. The best part is there are no contraindications-- even if it doesn't work, it shouldn't hurt.
If it is available in your area it might be worthwhile doing in conjunction with meds or separate from them.
Hugs to you all. That's a lot to sort out and I wish you a smooth decision-making process!
That's a tough decision. I want to say right up front that I have no idea what I'd do in your situation. So take what follows as a general comment about how I think about these things, which may or may not apply to your particular decision.
I take meds for my asthma. If I don't take them, the biochemistry in my lungs can get out of whack and my asthma flares up, preventing me from doing things I normally do, including some things I really enjoy. Unfortunately, once I have a flare up, it is really hard to break out of it on my own, because of the nature of the feedback mechanisms in the signaling pathways that are out of whack. So I take the meds, even though they have potential side effects- some of which are rare but pretty scary (e.g., death), and the most common of which is pretty annoying (more colds). However, once I use the meds to get the acute symptoms under control, I can then use other methods (yoga, allergen barriers, etc) to try to maintain better biochemistry without so much of the meds, and eventually I am able to go off the meds. Until the next thing that causes a flare up- like a wildfire, or a bad cold, or something.
To me, ADHD and anxiety are fairly analogous. The biochemistry in the brain is out of whack. There are feedback mechanisms that make it hard to break out of that on your own (even harder than my asthma case, probably, since the brain has pathways specifically designed to reinforce the encoding of experiences that happen repeatedly- this is the basis of learning). So sometimes, you need meds to help get the biochemistry back to a healthier state. Once you've done that, you might be able to use other techniques to maintain that state, and wean off the meds. Or you might not- and that is OK, too.
I see that the side effects are more disturbing, since they can mess with personality, which is much more unsettling than getting a lot of colds. But the people around fMhson- you, SciDad, but also teachers and doctors, can help monitor that, and maybe you'll be able to find a regimen that tweaks his brain biochemistry to a state that makes it easier for him to participate in life without changing the essence of him. A lot of people manage to do this- but I won't deny that more than few don't.
Like I said at the top- I don't know what you should do, and I don't envy you your decision. Good luck!
Lots of wise words in other comments. I don't have any words of wisdom, but it seems as if you've done a lot of research on the issue, so when you do make a decision it will clearly be from a place of both information and love. I don't see how it can get any better than that.
thanks to all my academic peeps for commenting. I love all the support, but don't feel obligated as I chronicle to keep reading these. It just seemed that the blogosphere was bereft of linear narratives of this sort, so into the breach I go.
I love CBT. I too did it in my thirties, and we have done CBT and it works pretty well for low level anxiety producing situations, but does nothing at all for the impulsiveness. it is like the definition of impulsiveness contravenes all the CBT we've tried. Stop, think, decide, use your mind to control your body etc all just FLY out the window at those points. One of the reasons I'm willing to try the meds is because at this point, fMhson is probably more troubled by his impulsiveness than his hyperness (which only happens when he gets amped up by something or someone). The anxiety doesn't so much cause problems and it precludes him from wanting to do things, which is just sad.
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