stimulant vasculopathy in a tween
April 21, 2021 7:42 AM Subscribe
How big of a deal is stimulant vasculopathy?
My son has been on stimulant meds for ADHD (Concerta specifically) since he was in 2nd grade without interruptions. In the past year he's developed problem with circulation - toes turning blue and cold for example. I did some initial medical research online (reading research study papers) and quickly realized it might be a side effect of the Concerta. We talked to his psychiatrist earlier this month who suggested we do a trial of pulling him off the stimulant for 20 days to see if it affects the vasculopathy and then we could determine next steps. We followed his suggestion and the vasculopathy resolved within 2 days of stopping Concerta and hasn't returned.
We have a follow up appt with the psychiatrist on Friday where we plan to go over the results. Additionally, per his rec, we are scheduling an appt with a vascular specialist to understand the degree of concern we should have regarding stimulant vasculopathy as the psychiatrist warned us when we saw him last that he could only guide us in helping to determine whether the stimulant was causing the vasculopathy (by supervising this drug vacation experiment) and that he could not tell us whether or not stimulant vasculopathy is something serious we should seek to avoid (for example by going off Concerta permanently) or a minor inconvenience we can acknowledge and leave untreated while continuing to give our kid Concerta. It's a big question to answer because the drug holiday reinforced for us that our kid really does have ADHD and being unmedicated does have a negative impact on his executive functioning and all the life successes that depend on executive functioning and impulse control.
I hate being in this period of waiting and not having answers and so even though we've scheduled the follow up appointment with the vascular specialist where we will hopefully get answers, that's a few weeks out. I know the doctors in the audience are not my doctor or my kids doctor and cannot give medical advice. But I'm hoping in the meantime someone (based on their understanding of current research in vascular health) will be able to give me a preview of what the vascular specialist is likely to say in general about stimulant vasculopathy and its seriousness. Are they likely to recommend we tinker with ADHD meds to find one that doesn't cause the problem or are they likely to say stimulant vasculopathy is no big deal, go back on the meds and just wear warm socks? What should I be bracing myself to hear?
My son has been on stimulant meds for ADHD (Concerta specifically) since he was in 2nd grade without interruptions. In the past year he's developed problem with circulation - toes turning blue and cold for example. I did some initial medical research online (reading research study papers) and quickly realized it might be a side effect of the Concerta. We talked to his psychiatrist earlier this month who suggested we do a trial of pulling him off the stimulant for 20 days to see if it affects the vasculopathy and then we could determine next steps. We followed his suggestion and the vasculopathy resolved within 2 days of stopping Concerta and hasn't returned.
We have a follow up appt with the psychiatrist on Friday where we plan to go over the results. Additionally, per his rec, we are scheduling an appt with a vascular specialist to understand the degree of concern we should have regarding stimulant vasculopathy as the psychiatrist warned us when we saw him last that he could only guide us in helping to determine whether the stimulant was causing the vasculopathy (by supervising this drug vacation experiment) and that he could not tell us whether or not stimulant vasculopathy is something serious we should seek to avoid (for example by going off Concerta permanently) or a minor inconvenience we can acknowledge and leave untreated while continuing to give our kid Concerta. It's a big question to answer because the drug holiday reinforced for us that our kid really does have ADHD and being unmedicated does have a negative impact on his executive functioning and all the life successes that depend on executive functioning and impulse control.
I hate being in this period of waiting and not having answers and so even though we've scheduled the follow up appointment with the vascular specialist where we will hopefully get answers, that's a few weeks out. I know the doctors in the audience are not my doctor or my kids doctor and cannot give medical advice. But I'm hoping in the meantime someone (based on their understanding of current research in vascular health) will be able to give me a preview of what the vascular specialist is likely to say in general about stimulant vasculopathy and its seriousness. Are they likely to recommend we tinker with ADHD meds to find one that doesn't cause the problem or are they likely to say stimulant vasculopathy is no big deal, go back on the meds and just wear warm socks? What should I be bracing myself to hear?
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My understanding is that it's not really a huge deal if it's not preventing you from doing your normal stuff and you don't have, like, ulcers on your feet. I haven't noticed a huge difference one way or the other, but I did move from a house with feeble electric heat and no under-floor insulation back to a nice sturdy radiator-heated NYC apartment around the time I started taking the meds. So I think the improvement I gained from that move was sufficient to cancel out any exacerbation from the meds.
I just wear slippers, avoid standing barefoot on the tile floor in the winter, take frequent breaks while skiing, and try not to bicycle long distances in the cold with wet feet. I do find that putting on multiple pairs of socks, counterintuitively, can make things worse — it's the tightness. The yak wool room socks from Muji are loose and very warm if I need something more than my wool slippers.
posted by sparkling at 8:24 AM on April 21, 2021 [1 favorite]