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Treating Pain in Medically Fragile Children · Pediatrics Now: Cases Updates and Discussions for the Busy Pediatric Practitioner

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I'm Holly Wehment, and this is Pediatrics Now. Let's listen in.
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Well, thank you so much for the invitation to come and join y'all in talking
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about the care of kiddos with medical fragility.
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And I'm just really excited to be here with y'all this morning virtually and
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get to see some of familiar names and faces on camera. So thanks so much for the invitation.
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So when Dr. Kamad asked if I would give kind of the opioid presentation for y'all this year,
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I asked if I could narrow in on little ones with medical fragility and talk
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a little bit more about my patient population because I feel like that's where
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oftentimes we feel the most uncomfortable, right?
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Most of us feel really familiar with how to manage pain in a completely healthy
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child who doesn't have anything else going on and doesn't have any other medications
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on board or any other comorbidities.
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But when it becomes my patient population and little ones have a long med list
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and they have other disorders, people get pretty nervous about treating this pain.
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And so I figured it might actually be helpful to talk about this population in particular.
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So our goals today is we're going to review some principles of pain treatment
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in the general pediatric population and then contrast these with recommendations
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for how to treat pain in a medically fragile population.
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We're going to look at what are the sources of pain in children with medical
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complexity And then also think a little bit about how we might develop a pain
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regimen for those littles.
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And then I'm just going to share some really practical clinical pain management
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pearls in this particular population.
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So we're going to start off with just some basic pain management principles.
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So this schema just shows the nerve pathways in our body. and we're going to
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spend some time later talking about the medications that we use to treat pain
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and where those pain medications work.
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But what I really wanted to focus in on here is how pain actually works, right?
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So when we're thinking about a completely healthy individual,
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we're usually thinking about some pain that is occurring in the tissues,
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whether that's in the extremities because of some type of injury or whether
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maybe it's an organ like appendicitis, right?
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There's some peripheral pain signal that then gets transmitted to the dorsal horn.
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And then there's a synapse there. And then it travels all the way up these ascending
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pathways through the spinal cord to the midbrain where it has some synapses in the midbrain.
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And then it goes through the limbic system and then to the cortex,
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right? So that's the normal pain pathway.
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When we think about kiddos who have underlying medical fragility,
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and by this, I'm really kind of talking about that, you know,
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0.1% of kiddos who have lots of underlying medical illness and many of whom
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have severe neurologic impairment,
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you know, their pain pathways actually look really different compared to a healthy child, right?
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Because they have ongoing pain on a regular basis.
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And so that means that those pain receptors aren't actually normal in the tissues, right?
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Like these are pain receptors that have really been primed to experience pain.
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The other thing that we know about little ones who have neurologic impairment
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and who have anatomical brain differences is that a lot of times the structures
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in the midbrain are not normal. And that's where pain is actually processed.
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And so that means they're not processing pain normally either.
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And sometimes they can actually get these kind of phantom signals that are happening
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in the brain because they don't have these normal midbrain structures.
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And so I especially worry about this in kiddos who have had like anoxic events, right?
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Because we know that watershed damage related to a lack of oxygen oftentimes
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tends to hit the midbrain very, very hard.
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So things like drownings, big motor vehicle accidents where they had a significant
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downtime, hangings, and then even some of the NICU injuries where there was
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a lack of oxygen around the time of birth.
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These kids don't have normal midbrain structures.
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So just kind of keep in mind that because these kiddos have an abnormal brain,
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that means that they're going to experience abnormal pain. And that becomes
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really important when we start trying to manage this pain and agitation in these little ones.
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So I also want to talk a little about the medication choices that we have available to us.
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The truth is we actually don't have a whole lot of dedicated pain medications
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and so you kind of have your mild
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pain medications like acetaminophen and ibuprofen or you have an opioid.
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Kind of classically speaking a lot of times we're thinking about these opioids
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as being weak opioids or more potent opioids. I do just kind of want to touch
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on the fact that all opioids are opioids.
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So when we think about codeine or we think about hydrocodone,
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these actually are processed in the body to codeine to morphine and then hydrocodone to hydromorphone.
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So I think sometimes we...
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Preferentially use hydrocodone because we think it is safer.
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And this is just a reminder that in fact, hydrocodone actually becomes dilaudid in the body.
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But the unfortunate thing about using these sometimes what are called weaker
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opioids is that they do require metabolism through the CYP2D6 enzyme.
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And not everybody's enzyme is the same. So some individuals are hyper metabolizers,
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meaning that they metabolize that medication very, very quick,
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which is where you can see increased side effects from these medications like
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somnolence and sedation and decreased respiratory rate and respiratory drive.
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Or some individuals can also be slow metabolizers, which means that they're
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not able to actually process that medication into the active drug,
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and then they don't actually get the pain treatment that you desire.
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So these weaker opioids are oftentimes actually less predictable.
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I would actually advocate for and just recommend that people really think about
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in this particular population where we already have a lot of drugs on board,
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where we have a lot of comorbidities, that we really stop and think about whether
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or not we want to kind of add in this other layer of complexity and unpredictability.
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It might actually be better to think about using a more potent opioid,
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remembering that all opioids are opioids.
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You're not actually more safe using those weaker opioids. But unfortunately,
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the less predictable opioids are more available.
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And so in this population, we might not want to necessarily be as dictated by
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the insurance companies and what they approve, but actually really stop and
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think about, hey, what's going to make the most sense in this population and
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argue for that if needed.
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So thinking about the safest drugs in medical complexity,
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again, a lot of times I think there's this fear of using opioids because of
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the opioid crisis, because we know that there are individuals who become addicted
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to opioids, that we should at all costs kind of avoid these opioids.
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And we tend to really heavily rely on things like acetaminophen and ibuprofen.
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But just kind of a quick reminder, and we'll talk a little bit more about this
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later, but ibuprofen is actually associated with GI bleeding,
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especially in this patient population.
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We don't really think about that too much in a completely healthy population
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where they're going to be on this medication for a couple of days,
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maybe a week in the setting of like a post-op circumstance.
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But in our patient population in children with medical complexity.
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They tend to require a longer time to recover from any type of illness because
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their nervous system is not normal to begin with.
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And so when they have pain, it takes a long time to recover from pain,
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which means they might be using these pain medications for a longer period of time.
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And personally, clinically, I've actually seen way more complications related
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to ibuprofen use than I have to opioid use because of the bleeding issues.
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So just something always to kind of bear in mind. Of course,
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we do worry about constipation and sedation and drug-drug interactions when
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we are using our opioids.
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Constipation is a really significant issue in little ones who have underlying
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medical complexity and neurologic injury, so it is something we do have to really think about.
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I will add, though, that most of these kids are already on a bowel regimen, and so it's not,
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oftentimes it's not as difficult as we think it's going to be to kind of increase
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that bowel regimen and kind of account for the opioid since they're already
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getting daily medications to manage constipation.
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So things to think about when you're dealing with chronic illness,
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it does mean that there's going to be chronic pain recovery.
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So we have to think about what these medications do long term,
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as opposed to just thinking about the short term effects of these meds where
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we don't worry as much about kind of
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big use of ibuprofen and Tylenol. All right, I'm not going to spend very much
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time talking about the math that goes into the use of opioids,
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but I would just like to remind people that this math exists, right?
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So there's some real numbers that surround opioid use.
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A lot of times when we're working with kids who are completely healthy,
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we heavily, heavily rely on the fact that these that their bodies are going
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to recover naturally on their own.
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And we're really just using a little bit of pain medication to kind of help
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them in that recovery process. But we're not expecting for them to be on these meds for very long.
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And every single day, they are dramatically and drastically better.
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And so we can pretty rapidly wean off of these medications without doing a whole lot of math, right?
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But unfortunately, in kiddos who have chronic medical illness,
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that's not necessarily true, right?
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They might actually be needing more pain medication to begin with.
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And then we can also expect that it might take them longer to recover,
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which means that we can't just kind of guesstimate, oh, yeah,
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they were getting this much IV medication.
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Why don't I try this oral dose, right? In this patient population,
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I would really recommend that you spend some time really look at a opioid conversion chart.
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Tally up how much daily opioid they're getting before you decide what their
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new pain regimen is going to be as you try to wean down those pain meds.
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So this here is an opioid conversion chart. I'm not going to spend time going
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over it because that's a lecture in and of itself.
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But if you don't know how to do this, then I strongly recommend that you talk
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to a pharmacist, especially for this patient population. You really do need
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to think about being very precise with this population so we're not leaving them in pain.
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The other thing to think about is the duration of action.
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Again, when we're weaning pain medications in little ones,
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who have underlying normal nervous
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systems, most of the time they're not needing nearly as much opioids.
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But in kiddos who have abnormal nervous systems, they might actually really
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be relying on that opioid to help address their pain.
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And if we make orders like morphine Q6 hours or hydrocodone Q8,
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unfortunately what happens is then those kids are left hours without pain coverage
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because the duration of action isn't actually that long.
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So you just really want to pay attention to that, especially in this patient
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population where they're going to be needing probably more pain medication in general.
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All right. So the opioid crisis, right? This is why we're actually having this
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whole conversation because all physicians need training in this because we're
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so worried about the negative effects of opioids in our country.
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So the question is, do I need to actually worry about addiction in this patient
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population, in the general pediatric population?
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What about in a population of children with neurologic impairment?
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And I would say, you know, the answer is sort of, right? So first of all,
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let's review what addiction actually is.
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So addiction is the compulsive seeking of a drug despite harm, right?
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And that's not usually something we're really worried about in very young children
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or children who are developmentally young because of underlying neurologic impairment.
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They don't actually have the ability to seek out a drug.
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What we tend to worry more about in young children and children with neurologic
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impairment is the physiologic dependence, where they actually have physiologic
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changes to their nerve cells.
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There's changes in receptors, both up-regulation and down-regulation,
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and so that puts them at higher risk for withdrawal syndrome if the drug should suddenly be stopped.
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I do think, though, we need to think about addiction in preteens and adolescents,
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and we also need to think about diversion in parents. You know,
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is that a risk if we are prescribing long-standing opioids?
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And then, of course, the physical dependence in more medically fragile children.
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So how do we, you know, when should we worry and when should we not worry?
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And how do we go about screening for this?
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So it's less concerning if the child is very young, if the child has neurologic
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impairment, and if the opioid use is really short-term.
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More concerning, of course, if all the opposite is true, it's an adolescent
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who's neurotypical and it's gonna be a longer opioid prescription.
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There is an opioid risk tool. This has a lot of evidence behind it.
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And you can rest assured that if that tool, it has a low score,
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that you can feel pretty safe using an opioid even for a longer period of time.
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Things that we don't talk about is how do we screen parents?
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I think you actually could screen parents of children if you have worries, right?
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And maybe it's not even like an official screen, but you know what the questions
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are on the screen and you can go in and kind of get a better history to really
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assess if there's a parental risk of diversion.
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I will also say sometimes it's not really a risk about addiction or diversion.
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It's just a risk that someone might accidentally mess the dosing up, right?
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I definitely have families who are on my panel, families who I've cared for
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in the past, where they're super, super sweet. They have absolutely no malintent.
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However, it's just a really chaotic household. And I'm really scared that they're
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going to miss a dose or they're going to accidentally double up on a dose.
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And I just would prefer not to use an opioid in that patient.
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And I think there can be some wisdom in that at times.
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All right. So those were kind of some of our general pain principles.
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Now we're going to zero in on who have medical fragility. And again,
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I'm really kind of focusing in on little ones who have some underlying neurologic impairment.
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So there was a more recent,
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It's really helpful to look at all of these issues on one slide, right?
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From a specific standpoint, these kids have spasticity. They have dystonia.
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They can have movement disorders, contractures. They can have shunt dysfunction.
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Some of them will have self-injurious behavior.
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Their eyes can hurt because they don't close their eyes the way they're supposed
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to, and so they get keratitis.
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They can have recurrent pneumonias and have chest pain related to that.
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Their ears don't drain the way
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they're supposed to. so they can have some ongoing pressure in their ears.
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Constipation is the number one cause of pain in this population.
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And oftentimes, you know, we are pretty aggressive about a bowel regimen with these kids.
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But even with bowel regimens, these kids can very easily get backed up and then
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become very agitated because of constipation.
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They can have reflux, gastritis.
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Dental disease is another really driving factor for pains in these little ones.
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A lot of these little kiddos don't tolerate their feeds very well.
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So they have intermittent abdominal distension, which can over time lead to
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visceral hyperanalgesia, where the gut nerves basically become oversensitized to pain.
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They can have neurogenic bladders, which means they don't drain their bladder
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the way they're supposed to. So the bladder is distended.
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They get UTIs. From a musculoskeletal standpoint, they have scoliosis and dislocated
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hips. They can have pathological fractures.
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At some point, they tend to have stoma irritations. So there's just a lot of
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reasons why these little ones can have pain.
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And this is pain that they experience every single day.
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These are chronic issues. This isn't just one issue at a time.
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This is multiple organ systems that are really just angry every single day.
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And so we can understand why these little ones are pretty agitated.
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And it's actually really impressive that we don't actually deal with neuro agitation
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more in this population.
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So, the unfortunate thing about having that much pain all the time is that for
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your brain, pain is like riding a bike, right?
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So, I'm not necessarily somebody who rides bikes routinely, but,
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you know, even if someone's not ridden a bike in several years,
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and all of a sudden you're like, hey, let's go for a bike ride, right?
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They can pretty quickly get back into the hang of things because your brain
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has already developed that pathway, right?
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Once you learn how to ride a bike, you can pretty much always ride a bike.
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And so unfortunately, the same thing happens with pain. So this is kind of my
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explanation of sensitization to families.
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So if you have a completely healthy kiddo, right, and they're experiencing like
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true pain for the first time, that pain pathway is like an old dirt road,
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right? It's functional.
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It can send signals, right? You can have a postman actually carry a signal from
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one end to the other end, and that pain signal is going to get there, right?
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But it may not be super effective, and therefore the pain may not be as severe, right?
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Because that child just doesn't have a well-developed pain pathway.
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Unfortunately, in little ones who experience pain all the time,
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our body does the exact same thing that the government does.
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They build a superhighway, right, so that we can effectively transport those
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signals from point A to point B, which means that little ones who experience
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chronic pain actually have a
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worsening pain and they actually respond to pain a lot faster and they tend
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to have an overreaction to pain because these pain pathways are so well primed
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to deliver pain signals, right?
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So you can kind of imagine this is the difference between delivery down an old
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dirt road and Amazon using a six-lane highway, right?
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Obviously, Amazon on the six-lane highway is going to be way more effective
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and a much stronger pain signal than someone traveling down a dirt road.
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So in addition to having sensitization to pain, I say that six times fast,
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these little ones also can have centrally mediated pain.
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So remember I talked about the fact that these pain pathways actually do go
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through the middle parts of the brain and there's actually some synapses that
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occur in the middle parts of the brain.
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Unfortunately, when those mid parts of the brain are damaged as,
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you know, with a big hypoxic events, whether perinatally or after birth or even when they're older,
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that means that the mid parts of the brain don't actually function the way that
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they're supposed to, which means that sometimes you can get these phantom signals,
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just like you have with seizures where there's this signaling that's happening
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in the brain that shouldn't be happening.
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The same thing can happen with pain where there might where the pain receptors
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might be triggered, but there's not actually a pain signal that's coming in from the periphery.
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It's just kind of these phantom pain voices that these receptors are hearing.
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And then they're signaling pain, this pain pathway through the limbic centers and out to the cortex.
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And so these kiddos become really agitated, but there might not actually be
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a true source of pain, but it doesn't mean that the child's not experiencing
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the pain and the associated agitation that goes along with it.
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So dysautonomia, this is a term that we throw around a lot in this particular
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pain population, or in this patient population.
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And so what is it? So usually when we're talking about dysautonomia,
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we're talking about the dysregulated effects of the sympathetic nervous system.
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And so it oftentimes it's when the sympathetic nervous system is in overdrive, right?
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So these kids have really high heart rates, they have high respiratory rates,
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they get flushed, they're sweaty, they can become really hypertonic to the point
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of like ipsetonus where they're like completely arched backwards.
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They oftentimes can have high temperatures and they don't manage their temperatures
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very well and they can be really agitated and crying. So.
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Sometimes you actually can have true dysfunction of the sympathetic nervous
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system itself, and then other times it's actually because of disorder in the
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pain receptors, and then that is triggering a sympathetic response.
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So the way that I talk to this with families is I kind of describe how we might respond to bears.
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So if you or I are out on a hike and we all of a sudden see a bear,
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our midbrain understands what's happening before our cortex does,
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right? So our heart rate is going to go up.
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Our respiratory rate is going to go up. Our blood pressure is going to go up.
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We're actually going to have increased blood flow to our muscles,
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right? So we can get ready to run, right?
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Our midbrain is like, hey, adrenaline rush now because you need to get away from this bear.
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What happens in little ones who have underlying midbrain dysfunction is that
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they can see bears that aren't really there,
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or the body can perceive some very mild pain in the periphery as this really big pain response.
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And so then they themselves become these very agitated little bears and very
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angry bears because they're responding to a situation that may not actually really exist.
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And it can be a really unfortunate situation, and it can be quite difficult to treat, actually.
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One of the things to know about dysautonomia is that it can change over time.
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So when you have dysfunction in the sympathetic system itself, what tends to happen is
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over time is that at the beginning, though, the dysfunction tends to mean that
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there's a lot of high sympathetic signals.
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And so there are agitation and tachycardia and high temperatures and high tone.
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But as time goes on, those signals tend to drop out and the signals actually
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start like disappearing.
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And so then these kids actually have the opposite effects, right?
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They don't have enough sympathetic signaling. And so then they have bradycardia
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and they have abnormal breathing and hypothermia.
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And unfortunately, these little ones can go back and forth between angry bears
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and hibernating bears as often as they like,
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which can mean that it's really hard to actually treat these symptoms because
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even though they may be responding and think that there's a bear attack during the day,
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they might be hibernating at night, which means that they may be dropping their
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heart rate down into the 30s and the 40s at night.
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And then you're having to be really thoughtful about the pain medications you're
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using because a lot of our pain medications can impact some of the vital signs.
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And so it can be tricksy to really treat these symptoms.
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I do want to mention that there is an emotional component to pain.
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So these pain pathways do go through the limbic system.
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And so there is some trauma to these little ones who experience pain on a regular basis.
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And whether that's because of real pain from all of those different sources
24:12
that we talked about, or whether it's just from some disordered signaling,
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there is an emotional component to what these little ones are experiencing every single day.
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And I think it's important for us to remember that and also to be pretty aggressive
24:25
about trying to treat agitation in these little ones so that they don't have
24:29
this kind of learned trauma related to untreated agitation and pain.
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So in summary, pain in medical fragility is multifactorial, which means that
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treatment should be multimodal.
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And it oftentimes means that we might need to use more than one drug to actually
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treat this agitation because there's many sources of pain.
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That might mean that we're using lots of different medications to address those
24:55
sources, but we might also be using multiple drugs to actually address that
24:59
central disorder of pain as well.
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And so a lot of times we're pretty hesitant to engage in polypharmacy.
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But what I would say is in children with medical complexities,
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sometimes we are engaging in thoughtful and purposeful polypharmacy for some
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really good reasons, right?
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And so we're going to talk a little bit about that as we move forward.
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So, these are the neuroreceptors that are heavily involved in the pain experience
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in little ones who have underlying neurologic impairment.
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So, when we think about the ways that we want to treat this.
25:37
Pain experience, we probably are going to be not just relying on pain medications
25:42
like ibuprofen and Tylenol and opioids, but we might be leaning into some other
25:48
pain medications as well,
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even medications that we don't classically think of as being pain medications.
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So I'm just going to walk through some of these receptors so that we're just
25:58
all a little bit more familiar of why we may be picking the drugs that we're picking.
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So GABA receptors, a lot of times we're thinking about benzodiazepines with these.
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So oftentimes, these are used to treat spasticity and seizures,
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and they're used, but we can also use them to treat dysautonomia and anxiety.
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Benzodiazepines work really well to treat dysautonomia. And part of the reason
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why is because one of the big features of dysautonomia in this population is
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that these little ones oftentimes will become very spastic.
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And so if you can help treat the underlying spasticity that allows the child
26:37
to relax, which actually kind of decreases the signal that really causes this
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dysautonomia cycle to happen.
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So it's a really nice drug to use for neuroagitation.
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One of the things that you do really have to be mindful of, though,
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is that we use benzodiazepines as rescue medications for breakthrough seizures.
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So you really don't want to saturate those receptors.
27:00
And so if you are using benzodiazepines to help treat neuroagitation,
27:04
especially if you're thinking that, hey, this was started on the inpatient side
27:08
and we might need to use this moving into the outpatient world and it's gonna be more long-term,
27:12
you really wanna make sure you're touching base with neurology if that child
27:15
has seizures because you wanna make sure you're not using so much benzodiazepine
27:19
that you're not leaving any room for rescue if these kids have breakthrough seizures.
27:24
I do think that we should think about using benzodiazepines a little bit more
27:27
for like pre-procedural anxiety.
27:30
And these little ones, these kids get poked and prodded a whole lot.
27:34
And obviously, there are some side effects to using benzodiazepines.
27:38
And certainly, we do have to really think about the impact that it's going to
27:41
have on their respiratory drive.
27:42
But I also think because these kids already have so much emotional impact because
27:47
of all the pain they're experiencing, that we should be thoughtful about making
27:51
sure that we're not just poking and prodding them.
27:53
And because they can't say anything, that we're not just continually coming
27:57
at them without thinking about their anxiety. related to all of those procedures.
28:02
Voltage-gated calcium channels. So these are the gabapentinoids.
28:06
I use gabapentin a whole lot in this patient population, and that's because
28:11
it doesn't tend to have a whole lot of side effects to it.
28:14
One of the main side effects that you do see is sedation.
28:18
Sedation tends to get better over a week or two of use, and I think that the
28:24
gabapentin really helps me decrease the other pain medications that I might be using.
28:31
So if I have a family who comes and says, yeah, like my child just really has
28:35
a whole lot of agitation, but you know, they respond really beautifully to ibuprofen.
28:39
So I'm giving them a dose of ibuprofen once or twice a day, every single day.
28:44
For children with underlying neurologic impairment who are G-tube fed and really
28:49
high risk for reflux and gastritis and GI bleeding, I'm not a super huge fan
28:53
of using ibuprofen every single day just because it can have chronic effects.
28:58
However, what I do like to do is add some gabapentin on board,
29:03
and then that might mean that I'm able to use that ibuprofen less, right?
29:07
So that's kind of that thoughtful polypharmacy. I'm probably not going to get
29:10
rid of that ibuprofen altogether, but I might be able to decrease the ibuprofen use overall.
29:17
So when there's not tons and tons of studies behind gabapentin in this particular
29:22
patient population, there's no big randomized control child looking at how we
29:26
use gabapentin in children with severe neurologic impairment.
29:29
But there are some good case series that looked at some small,
29:33
there's still small groups of children, but there is a study out there that
29:36
looked at like 22 children who had severe neurologic impairment and daily pain.
29:40
And what they found is that gabapentin decreased that pain by about 50%.
29:44
And if I can give a child, you know, 50% more good days to me.
29:51
That's worth it, especially when it doesn't have that many side effects.
29:54
So I tend to use gabapentin a whole lot.
29:58
And again, it's not because I never promised that the pain is going to go away
30:01
completely, but my goal is to just give overall more good days.
30:06
We all are pretty familiar with our opioid receptors and opioids.
30:11
What I will say is I think we probably don't think about opioids enough.
30:15
Again, there is such a thing as opioid addiction.
30:18
There is a real opioid crisis going on, But that's really not occurring in this
30:23
patient population, right?
30:24
We're not worried about 5-year-olds with severe neurologic impairment becoming
30:28
addicted to opioids, right?
30:31
However, opioids are a really, really nice medication to use in neuroagitation.
30:36
And that's because it's directly impacting the disordered cells, right?
30:42
So those midbrain cells that have disordered pain signaling,
30:45
the opioids are acting directly on those cells.
30:48
The other thing that I would just like to kind of remind people or,
30:52
you know, I guess teach people is that oftentimes you're not really having to
30:57
use really high dose opioids in this population.
31:00
I've gotten away with just whiffs of opioids, just really low dose opioids, maybe two times a day.
31:08
And it really makes a huge difference for these little ones.
31:12
And it also means I'm not heavily relying on my ibuprofen.
31:15
I have a decreased risk of bleeding.
31:17
Right. And then I'm not getting a whole lot of constipation from it because
31:21
I'm not using high dosing and I'm not using it multiple, multiple times a day.
31:26
So again, kind of thoughtful polypharmacy, maybe you add in some gabapentin
31:30
and you add in some low dose opioid and you're not getting a lot of side effects
31:34
from either one because you're using both of them and they're working together
31:38
in harmony to help decrease overall neuro agitation.
31:43
Alpha-2 adrenergic receptors. So these directly act on the sympathetic nervous system.
31:50
So clonidine is an alpha-2 agonist, which is actually part of that negative
31:53
feedback loop and actually shuts down the sympathetic nervous system.
31:58
Um, these work, so clonidine works really, really well in neuroagitation.
32:02
It probably works, it's probably one of the best drugs for neuroagitation, honestly.
32:08
And when you can get away with using it, it's really nice.
32:11
The one thing that you have to think about with clonidine, though,
32:14
is that because of the way that it works, it does drive down the heart rate.
32:18
And so one of the significant side effects is that you can get bradycardia when
32:22
you're using clonidine.
32:24
Think back to those bears that I showed you earlier. So there are little ones
32:28
who can be really agitated during the day, but then they can go into hibernation
32:33
mode at night, and then they're dropping their heart rate down into the 40s and the 50s,
32:37
and clonidine then becomes a really tricksy drug to use for those little ones
32:41
because now clonidine is going to further drive down that heart rate.
32:46
So you have to get a really good history if you're going to use clonidine,
32:49
and you have to make sure that they have enough heart rate reserved. nerve.
32:53
Serotonin and norepinephrine, we know that these receptors are involved in chronic
32:59
pain. We know that they're involved in nerve pain, and there's actually good
33:02
studies behind using these medications when there's concern for nerve pain.
33:07
I like to throw them on board when I'm worried that there might actually be
33:11
some comorbid depression.
33:13
I don't think we think about depression enough in this population.
33:16
Just because these kids can't tell us that they're feeling sad or because,
33:21
you know, they don't actually control their own appetite because they're T-tube
33:25
fat, and so they don't have some of the other signs of depression,
33:29
doesn't mean that they don't actually experience depression.
33:32
So if I have a little one who's experienced a big life change,
33:36
so let's say a parent passed away or a parent moved out or a grandparent who
33:41
was a main caregiver passed away,
33:43
or let's say there's been a big change in the social structure or the social
33:48
living environment, or maybe there's been a big change in function.
33:52
So I've definitely have kiddos who have pretty significant neurologic impairment
33:57
who used to go to school and then something happens with their other medical
34:02
diagnoses and now they really go to school and then these little ones get really,
34:07
really sad and then they can just get really agitated and it can be helpful
34:12
then to actually try to treat that depression and see if the agitation improves
34:16
by adding in an SSRI or an SNRI.
34:20
As far as THC, these are usually parents who found some drop that they want to add in.
34:27
This is not usually something I am recommending. What I would say is that I
34:32
think we have to take a good history and make sure that this medication isn't in play.
34:36
And then the other thing is to actually try to direct our families to providers
34:41
who are familiar with what the resources for these drops and medications are in the community.
34:48
We actually have here up in Austin, we actually have one of our neuro groups
34:52
here in town uses some of these supplements and they have like a few select
34:58
few number of the supplements that they will actually use.
35:02
And so then they can try to better control and have a better idea of what is
35:07
actually going into the child's system as opposed to some of these over-the-counter
35:10
drops where it's not FDA regulated and you really have no idea what the kid
35:15
is getting from one bottle to the next bottle.
35:17
And so I don't usually advocate that children use these, but it definitely is
35:22
something that parents will try. And I think we just have to be good at getting that history.
35:26
And then if it's a parent who really wants to use this medication,
35:29
trying to direct them to the right person who has a little bit of expertise
35:34
in using the supplements that are readily available and which supplements to
35:40
use and which supplements not to use.
35:42
For little ones who have underlying movement disorders or who have a whole lot
35:47
of self-injury involved,
35:49
I will think about using Risperdone or Ariprizole to help with the agitation
35:54
in the context of those two underlying comorbid issues.
35:59
I didn't list dosing out here because that would take a whole lot more time to go over.
36:04
But this is a really wonderful guide. It's put out by the Dana-Farber Institute
36:10
and it's updated regularly. It's called The Little Blue Book.
36:13
And it's actually, it's a very small, thin book. It's only like 20, 25 pages.
36:17
And it's organized by symptom. And so you can look at the front at the index
36:22
or the table of contents, pick out which symptom that you're trying to treat,
36:26
and then you can go to that page and it lists out all the different drugs and
36:29
all of the different starting doses and how you titrate those doses.
36:32
So I strongly recommend this is a resource that everybody kind of has saved
36:36
on their phone because it can be really helpful when you're trying to manage
36:40
agitation in these little ones.
36:42
So I want to end with talking about some of the approaches to pain in children
36:46
with medical fragility, both in the settings of iatrogenic pain and then also in chronic illness.
36:53
So first of all, I think we need to think about trying to prevent pain,
36:56
right? So what can we do to mitigate pressure ulcers?
36:59
How do we plan for painful procedures?
37:01
How do we minimize painful stimuli? Can we combine procedures so that we're
37:06
not poking these children every other month, right?
37:09
So if you know the child's going to be sedated, get labs under sedation,
37:12
get vaccines maybe under sedation, combine those painful procedures.
37:16
So we're only sending all of those pain signals at once instead of really sending
37:22
these pain signals more regularly.
37:23
Have a really good bowel regimen in place. We know that constipation is a really
37:28
serious issue for these little ones, and it tends to cause a lot of pain signaling,
37:34
and then it primes the system.
37:36
So then if there's pain anywhere else, it just makes the pain overall worse.
37:40
So thinking about a bowel regimen as a prevention plan for pain,
37:45
I think, is a really good way to talk to families about the importance of a bowel regimen.
37:50
Having really good spasticity management is also important, making sure that
37:54
equipment fits well and that kids aren't having injuries related to rubbing
37:59
up against their AFOs or their wheelchairs.
38:02
Also thinking about just environmental factors when they're in the hospital,
38:06
making sure that they're in a position of comfort, adding cushioning if need
38:09
be, and then addressing any delirium concerns.
38:12
Again, this population's really high risk for having delirium,
38:15
and I don't think we think about it enough, but we want to mitigate that as
38:19
much as possible because it's only going to make your agitation and your pain worse.
38:23
It is really important for us to think through the plan for painful procedures.
38:28
So a lot of the ortho procedures tend to require quite a bit of recovery time
38:34
for this particular population.
38:36
And so we want to make sure that we're setting everybody up for success.
38:39
You know, we are pretty familiar with the meds that we use when they're inpatient,
38:43
and there's a lot of guidelines and there's a lot of kind of regimens that are
38:48
pretty well kind of set in stone for what happens at the end.
38:52
After the operations. What we sometimes don't take into account is the fact
38:57
that it takes these little ones longer to recover, two to three times longer,
39:01
I think, sometimes than we really expect.
39:03
And then we're all struggling with, oh my gosh, what do we do?
39:07
Because now we're having a really hard time getting the kiddo off of the opioid
39:10
or off of the benzodiazepine.
39:13
So I would recommend consider starting gabapentin two weeks in advance.
39:18
And you're going to ask, what is the evidence behind that.
39:21
So there is some evidence. There's not great evidence. And some of that is because
39:25
we just don't have a lot of these big randomized control trials that are happening
39:30
in children with severe neurologic impairment that are getting big HIP procedures, right?
39:34
There are some studies that did look at it, and the data is a little bit mixed
39:39
as to whether or not it helps.
39:41
But overall, the consensus is we need more studies looking at how we would use
39:46
gappapentin in a pediatric population, specifically in a population of children
39:50
with severe neurologic impairment.
39:52
But what we do know from the adult world is that there is evidence that using
39:58
gabapentin prior to surgery and then after surgery can be helpful and it can
40:03
be opioid sparing, meaning that when gabapentin's on board,
40:06
you may still need opioids, but you can get away with using less opioids when
40:11
you're using gabapentin.
40:13
The reason I tend to do this is because, again, I'm not trying to decrease all
40:18
pain and get rid of all pain. I don't think that gabapentin is going to do that.
40:21
But I do think with some thoughtful, selectful polypharmacy,
40:25
I might be able to decrease the amount of opioids that this kid has to use after
40:30
their procedure and then
40:32
Also, the amount of opioid the kiddo might have to come home on, right?
40:37
So if I, and I like to start gabapentin two weeks in advance because I like
40:40
for them to have a good blood level and basically be at steady state before
40:45
they go into the surgery.
40:46
And that helps prevent some of the need for long-term pain management or more
40:54
like bigger heavy duty pain meds after the surgery.
40:58
I think you should go ahead and start these kiddos on an H2 blocker or a PPI
41:02
because we know that one of the mainstays of these big ortho procedures is ibuprofen, right?
41:08
And it's a great drug to use in this setting. It helps a lot post-op.
41:13
However, I have seen numerous children over the course of my career who get
41:17
readmitted with GI bleeds because of prolonged ibuprofen use after big procedures.
41:23
And so we want to make sure we're being really thoughtful. go ahead and add
41:26
that GI protection in early so that we're not kind of kicking ourselves later
41:31
when this kid gets readmitted.
41:33
And then we need to have a plan for who in the world is going to be managing
41:36
these benzos and opioids after discharge.
41:40
We know that it takes them longer to recover.
41:43
So let's try really hard not to push them off of the opioid and the benzo by the time of discharge,
41:51
let's actually just have rather have a plan for who could actually manage some
41:56
of these benzodiazepines after they leave the hospital.
41:59
And maybe they do go home with some PRN opioid that might help prevent a re-hospitalization
42:05
because of uncontrolled pain.
42:08
So when I am managing these kiddos post-op, I again, I kind of set up the expectation
42:15
that They may need to leave with some of these bigger pain medications and then
42:18
have really close follow-ups, right? I'm not saying you just send them out into the world.
42:22
You have to have a plan for who's following this.
42:25
And then usually what I do is I try to have a, you know, whenever they go home
42:29
that same week, I try to have a telemed appointment and then I'll have a telemed
42:32
appointment the following week,
42:34
really checking in on these little ones and then trying to actively lean down
42:38
the opioids and the benzos.
42:40
I want to get off of the opioids and then first and then the benzos.
42:43
I always need gabapentin for last.
42:46
I actually want kiddos to be off of Tylenol and ibuprofen for a week before
42:51
I will wean off the gabapentin.
42:53
Again, because the gabapentin is actually going to have the least amount of
42:56
side effects, even compared to ibuprofen, so I always wean it off last.
43:00
So my kind of summary for gabapentin is be quick to think about it and be slow to stop it.
43:06
And I'll also say it's a pretty easy drug to come off of.
43:09
So I think sometimes families are like, oh, my gosh, like, is it going to take
43:11
a big wean? It really doesn't. It takes about a week to come off of it.
43:14
It's really not difficult to come off of gabapentin.
43:18
So what do we do with the really fussy patient?
43:22
Like, where do we start, right? They might be, this little one might be admitted
43:25
for pneumonia or maybe they're admitted for a UTI, but they're just so fussy.
43:31
And that's the main complaint that this family has.
43:35
And what in the world are we supposed to do for this patient, right?
43:39
So first of all, go in and get a really good history. Has the child ever done this before?
43:43
What medications have helped in the past? Does the child have a history of dysautonomia?
43:47
The family may not have heard that term, but you can definitely run through those symptoms.
43:51
So they have episodes where they get really agitated. They have high heart rate.
43:55
They get flushed. They have some hypothermia, right? Or they have increased
43:59
episodes of tone, right?
44:00
Also be sure to ask, do they have episodes where they have really low heart
44:04
rates? Like when they're sleeping, what do we think their resting heart rate is?
44:07
Because that'll give you some clue as to what medications you can and cannot use.
44:12
You want to look at the physical exam. You know, do they have signs of spasticity?
44:17
Well, maybe that's one of the first things that we really want to go after.
44:20
And then we also want to think about what pain triggers the child's at risk for.
44:24
So we want to go back, look at our list, make sure that we're kind of working
44:27
this pain up and so we can rule some things out.
44:30
There are some things that are, you know, highlighted in yellow that are diagnoses of exclusion.
44:35
So after you kind of go through the workups for some of these other things,
44:39
you may find that maybe there really isn't some obvious reason why they're having
44:43
pain and maybe really do think it's just some centrally mediated pain or some
44:48
visceral hyperanalgesia.
44:49
So while you do the workup, go ahead and try some Tylenol or ibuprofen.
44:53
If you're going to be scheduling an NSAID, again, think about adding in some GI protection.
44:59
But what if the child is really, really agitated and that's not enough?
45:03
Well, then we start thinking about our bear sprays, right? So we're out in the woods.
45:08
This kiddo is seeing bears. They may or may not really be there,
45:11
right? But we know this child's having a really exaggerated response.
45:14
So then I'm going to go to my bear sprays, right? which tend to be my clonidine,
45:18
benzos, gabapentin, and opioids.
45:20
Gabapentin is a really good long-term bear spray.
45:24
I tend to use it a lot on the outpatient setting.
45:27
It's not as helpful in the inpatient setting because it does take a little while for it to work.
45:31
So on the inpatient side, you might be thinking more about clonidine,
45:35
benzos, maybe using an opioid.
45:37
First thing to do, go ahead and look at their med list.
45:40
Are they already on a benzodiazepine? Do they already get some Klonopin for
45:44
spasticity? Do they already use some Klonodine for sleep?
45:48
Well, if they do, then you know that they tolerate that drug.
45:52
Could you just add in an extra dose, right? We know that their body responds
45:58
well to that medication.
45:59
Why don't we just go ahead and increase that medication and trying to reinvent the wheel?
46:04
Let's just use their med list to our advantage, right? So that's the first thing that I would recommend.
46:09
If they aren't already on one of these drugs, then you can kind of look at their
46:14
physical exam and kind of decide what you might use.
46:17
If they seem to be in really sympathetic system overdrive, you might go for
46:21
something like clonidine.
46:23
If they seem, if spasticity seems to be the main feature, then maybe you'd go for a benzodiazepine.
46:29
If you really think it's pain that's triggering, then maybe you go for an opioid.
46:34
Again, just remember you have to get a heart rate history. I've been burned
46:37
by this, which is why I've I've mentioned it like three times now because these
46:41
kids come outpatient and then, you know, the home health nurse is like,
46:44
hey, so their heart rate is like in the 30s.
46:46
And the family doesn't want to stop the clonidine because it does work really, really well.
46:50
And then you're like, yeah, but we can't have our heart rate in the 30s.
46:53
So always be sure before you start clonidine, know what you're getting into.
46:56
So this is just kind of a diagram of the neuro impairment symptom cycle.
47:01
And so this is what we tend to see with these little ones. This gets triggered
47:04
by some type of illness, some type of pain. And then all of a sudden,
47:08
we have these dysautonomic symptoms. They become spastic.
47:11
They get agitated. Then they don't tolerate their feeds. And then they get seizures.
47:14
And that just makes them more dysautonomic. And then we just get into this horrible cycle, right?
47:19
And so what we're doing with these medications here is trying to figure out
47:23
what is the best way to stop this cycle so that we can help this child be less agitated.
47:29
Just kind of a quick run-through drug-drug interactions. You do have to think
47:35
about it in this population. These kids are on a lot of medications.
47:38
So you do need to be worried about serotonin syndrome. That is real.
47:43
I have seen it, and I have seen it be missed because it's just not something that we see very often.
47:48
So these are the signs and symptoms of serotonin syndrome.
47:51
Most often in this population, what we're going to see is these kiddos be more
47:55
tremulous, and you need to kind of go back and look at the medication list.
47:59
If they are on an SSRI or an SNRI, then they are high risk for this happening
48:03
when you start adding in additional medications.
48:06
We do need to think about over sedation and vital sign changes,
48:09
and we also need to think about QTC prolongation.
48:13
I strongly recommend that you put the med list through a drug interaction checker.
48:17
This is the one I use. If you actually create an account, you can put like 10
48:21
drugs into this interaction checker, and it can be really helpful so you know
48:26
whether or not you need to get an EKG or whether or not you need to be worried
48:29
about serotonin. Serotonin can be really tricksy.
48:32
Sometimes it, you know, there are drugs that we don't really think about,
48:35
like ciprohepstein or fentepla that act on the serotonin pathways,
48:38
and we just forget that serotonin is involved. So always be on the lookout for that.
48:45
So just kind of in summary, if kiddos have chronic pain, that probably means
48:50
when you're adding these pain medications that they may become chronic medications.
48:53
So we need to really think about those long-term side effects.
48:56
We need to think about who is going to manage it before we send them outpatient
49:00
and make sure that everyone is really comfortable with that dosing.
49:04
And with that, I'm going to end. There are some additional resources here for
49:09
you if y'all send out the slides, but I'll take questions if you have any.
49:13
Thank you, Dr. Vandermeer for that fantastic presentation on treating pain in
49:17
children with the medical fragility.
49:19
Let's see if anybody has any questions, comments.
49:22
I'm monitoring the chat box. We can also ask a question directly.
49:27
There's a question in the chart box, Rachel. Any experience with the newly approved
49:31
pain med sugesterogene, the NAM 1.8 sodium channel blocker?
49:40
I do not have experience with that pain medication. I would have to look more into that.
49:44
That's not something I've used with my little ones. Any other questions?
49:50
Go ahead and ask your question, please.
49:54
Yeah, well, I've lived in a city and trained in a city and taught in a city
50:00
that had a very large African-American population.
50:05
And so we had to have two clinics, one clinic for adults and one for children
50:11
for sickle cell disease.
50:13
And this can get to be a really bad problem in terms of stuff.
50:18
And it really opened my eyes the first time I saw a parent.
50:23
Correct her child's behavior for drug-seeking behavior right in front of a physician.
50:30
So there's that problem. Yeah, you definitely have to be more aware when you're
50:38
dealing with those who are neurotypical, right, which is what you usually are
50:43
dealing with in the setting of sickle cell, right?
50:45
Sometimes those kiddos do have
50:46
strokes, and so they're not always neurotypical, but usually they are.
50:51
And so that definitely, it's kind of a totally different talk, right?
50:55
Because you definitely have to be more aware and it's a fine balance, right?
50:58
Because you want to make sure that you're treating pain, but you also want to
51:01
make sure that you have all of that accountability, that you're keeping everybody
51:04
safe. And it's a very fine line to walk for with that particular population.
51:11
Well, what I found was that sometimes the six-year-old kid that was drug-seeking behavior.
51:19
Suddenly, he's a 20-year-old, and he has a flourishing business of prescribers
51:25
giving him opiates or herb, and it's a problem.
51:31
Yeah. I mean, these drugs can be very dangerous, right?
51:34
As can many other drugs. And I think that sometimes the opioids,
51:38
we really focus in on the opioids, but there's a lot of benzodiazepines in these houses.
51:44
And I have seen benzodiazepines be used inappropriately by family members more
51:50
than I have opioids because there tends to be more benzodiazepines in the house
51:54
of children with underlying neurologic impairment.
51:56
So I think it's just a good reminder that, and then gabapentin can also be misused as well.
52:01
And so I think it's just a good reminder for us to be thoughtful and to have
52:05
conversations with families.
52:07
And really the most important thing is that we have relationships with these families.
52:10
We shouldn't just be prescribing these medications and sending them off into
52:14
the world. We need to be meeting with them frequently.
52:16
They need to be established in a pediatric home where they're being seen regularly
52:20
so that we can assess for these things and we can assess for abnormal behavior,
52:25
not just in the child, but also in the parent.
52:28
Well, thank you for this wonderful lecture. Yeah.
52:31
There's another question in the chat box. How quickly are you comfortable to
52:35
titrating up gabapentin in hospitalized patients?
52:39
Yeah, so you can actually titrate it up pretty quick. So I usually start out
52:44
with 15 milligrams per kilogram per a day, and you can titrate that up over three days.
52:50
So I start out with an evening dose, five milligrams per kilogram,
52:54
and then go to BID and then TID. So within three days, you're really kind of
52:59
at that 15 milligrams per kilogram dosing.
53:02
But even like in, you know, later in the week, you could continue to go up.
53:08
You know, it has a pretty large safety window.
53:10
The thing that you're most worried about with gabapentin is the sedation.
53:14
So as long as you don't feel like you're getting a lot of excessive sedation,
53:18
then you can continue to go up.
53:22
Usually average dosing that I'm aiming for is 35 milligrams per kilogram.
53:26
There are individuals who will really try to push that dose up to like 50 milligrams
53:31
per kilogram. I've seen 5-0.
53:34
I have seen people really try to push beyond that. I don't think that's very helpful.
53:40
I really try to stay around 35, 35 milligrams per kilogram.
53:45
I might get up to 40. But after that, then I'm usually looking for some other
53:49
drug. But I do want to get to that 35 milligrams per kilogram to know that I've
53:54
actually really gotten as much benefit out of that drug as I can.
53:58
If a kid is already on gabapentin, you know, let's say they're sitting at like
54:02
20 milligrams per kilogram, just bump them up.
54:05
It's pretty easy to, you're not really going to get a whole lot of side effects from it.
54:09
Any other questions? There are two comments. Dr. Williams says,
54:12
excellent presentation.
54:14
Dr. Lipset, it is refreshing to hear a talk on pain that didn't concentrate on and addicted adults.
54:22
Happy to help. Again, opioids, they are a risk, but they're not necessarily
54:27
a risk in this particular population. And so we just need to be thoughtful about
54:31
it and use it when it's appropriate, right?
54:33
All drugs have side effects and all drugs can have serious reactions,
54:37
but that's including all drugs.
54:39
And as providers, we can know when to use them and not use them and don't necessarily
54:43
have to be overly frightened and using a medication that might be the best medication
54:47
for the particular symptom.
54:49
So thank you all so much for having me. There's one more question, maybe last question.
54:54
In addition to melatonin for poor sleep, what are your thoughts on clonidine
55:00
versus emiteptiline versus trezadone versus benadryl, or do you prefer another med?
55:07
Yeah, so clonidine is probably a mainstay. I also use gabapentin a lot for sleep.
55:14
I couldn't hear if that was one of the ones that was listed,
55:17
but gabapentin, because it does cause sedation.
55:19
It's a really nice medication to add on to help cover for both some chronic
55:23
pain and some agitation as well as sleep.
55:26
I'm not a huge fan of trazodone because it has some serotonergic activity and it just freaks me out.
55:32
I think when you start adding in, it's just a very dirty drug.
55:36
And so sometimes that's nice, right? In certain populations when you have nerve
55:40
pain and you have sleep problems and you have some underlying depression issues
55:45
and agitation, Like sometimes you're using that dirty,
55:48
all those receptors to your benefit, but sometimes I think it gets just adenon
55:52
and people forget all of the receptors that it hits.
55:54
And so I tend to prefer clonidine or gabapentin.
55:58
Dr. Vanderbilt, thank you very much for that. Outstanding presentation on pain
56:02
medication in children with medical fragility.
56:06
Thank you so much for listening to that fascinating talk.
56:10
Don't forget to click on the link for MOC credit.
56:14
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56:18
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56:22
or the web address is pediatricsnowforparents.com.
56:27
Do you have a question? Email that to me, and if you feel comfortable sending
56:33
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56:36
Thank you so much for listening. I'll see you next week.
56:39
Music.