427. Q&A: How can I support my child with PANS or PANDAS through anxiety and OCD?

Dr. Sarah Bren (00:02):

Ever wonder what psychologists moms talk about when we get together, whether we’re consulting one another about a challenging case or one of our own kids, or just leaning on each other when parenting feels hard, because trust me, even when we do this for a living, it’s still hard. Joining me each week in these special Thursday shows are two of my closest friends, both moms, both psychologists, they’re the people I call when I need a sounding board. These are our unfiltered answers to your parenting questions. We’re letting you in on the conversations the three of us usually have behind closed doors. This is Securely Attached: Beyond the Sessions.

(00:41):

Hello, welcome back to the Beyond the Sessions segment of the Securely Attached podcast where we answer listener questions and I have my very beloved friend and colleague, Dr. Emily Upshur here, to answer questions.

Dr. Emily Upshur (01:00):

Hi.

Dr. Sarah Bren (01:01):

Hi.

Dr. Emily Upshur (01:03):

Yay.

Dr. Sarah Bren (01:03):

So you ready?

Dr. Emily Upshur (01:05):

I am. Let’s do it.

Dr. Sarah Bren (01:06):

Okay. So this mom wrote in, “Hi, is there a better time to start space?” For those of you guys who don’t know, space is referring to supportive parenting for anxious childhood emotions.That’s an acronym. Is there a better time to start space? For example, my child has pandas/pans and clothing is an issue I am accommodating. Same underpants. As underpants are required for school, should I wait until the school holidays to stop accommodating this or risk school refusal, which was an issue during a flare up. She’s now very happy going to school, so I’m worried about rocking the boat and I’m worried accommodating the ritual. Even identical underpants are quote uncomfortable. Thank you. I live in the UK but I heard you on Dr. Nancy O’Hara’s podcast.

Dr. Emily Upshur (01:52):

Oh, cool.

Dr. Sarah Bren (01:53):

Oh, that was such a good episode. I will link that in the show notes. So Dr. Nancy O’Hara, if you guys don’t know who she is, there was an episode that she did on the podcast, but then I also went on her podcast and talked a little bit about the therapy side of treating PANS/PANDAS. But when she came on our podcast to talk about PANS/PANDAS, I learned more in that episode.

Dr. Emily Upshur (02:20):

I was going to say, can you tell us a litle bit about what it is?

Dr. Sarah Bren (02:25):

Well, I will link to this episode because she goes far more in depth and she does it more justice than I can do. But PANS/PANDAS, these are kind of two very similar disorders. PANS stands for pediatric acute onset neuropsychiatric syndrome and PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. But basically the idea is a kid gets some type of viral or bacterial infection and that infection causes inflammation in the basal ganglia, which is a part of the brain that is kind of associated with OCD and tick-like symptoms when it’s agitated or not functioning correctly. And because the autoimmune response to this illness seems to for whatever reason not go to … If you have strep, you would think the autoimmune response would be more or less located in the throat, but for whatever reason for some kids the autoimmune response is kind of redirected to this part of the brain and what occurs is like this acute onset OCD and it’s not necessarily like you don’t have to have OCD beforehand, you don’t have to have an anxiety disorder or anything like that.

(03:56):

And that sudden onset is like a really important diagnostic feature of PANDAS. It’s like, it’s not this slow build. It’s like my kid got sick and then boom, they have this really strong intrusive thoughts, compulsive behaviors, ruminative kind of symptoms.

Dr. Emily Upshur (04:16):

And inflexibility sort of like this parent is describing.

Dr. Sarah Bren (04:20):

Yes. And so while we have to understand it as a medically induced sort of behavioral issue, the symptoms we’re seeing are medically induced, not like organically or psychologically induced. The thing is, one, you want to treat it medically, but you also kind of need to treat it behaviorally because now we have the OCD symptoms that we … Even on, you want to treat the autoimmune response. You want to treat the inflammation. You also want to like treat any viral or bacterial illness that you have that’s causing the inflammation, but you also need to manage the symptoms. And the way that we manage those symptoms is through behavioral interventions like therapy for OCD and anxiety that is the same as if you didn’t have PANSPANDAS and you just had OCD or anxiety. The good thing is that’s pretty straightforward and why I love space, which is what this parent is asking about, which is a therapeutic protocol that was developed at the Yale Child Study Center by Eli Liebowitz.

(05:40):

He also did a great episode of this podcast that I will link also in the show notes about space, but the treatment is, when you’re treating anxiety in OCD in kids, you can treat them directly usually with CBT or some combination of CBT and other sort of like relational therapeutic interventions, but if the kid doesn’t want to engage in therapy or they’re too young or it’s hard to … Doing that kind of treatment is overwhelming or not working so well. I prefer space because space is working with the parents, not the child. And so when a child has anxiety or OCD, they will solicit a lot of accommodations from their primary caregivers that help them to be rescued from the feeling of anxiety, right?

(06:49):

And when we accommodate those, either like helping me avoid feeling anxious or do this thing so that I stop feeling anxious, those kinds of things. And so when we help the parents kind of map out what accommodations they are engaging in that are kind of sort of rescuing their child from the feeling of anxiety and then we help the parent kind of develop a kind of pick one and create a plan to like to pull away that accommodation and basically sort of creates a different type of exposure for the child that isn’t requiring the child to do anything different. It’s just the parent changing the parental behavior, which is allowing the child to feel anxious in a safe and supported way, but still feel the anxiety because we’re not rescuing them from that by doing the behavior that we had previously been doing and the child feels anxious and that anxiety does eventually pass and we help the child sort of integrate that like, okay, I survived that.

(07:53):

Actually the thing that I thought I couldn’t do, I was able to tolerate and get through to the other side. And then also importantly that anxiety, that wave, it comes and it goes and I am now becoming more slowly more and more confident that I can ride that wave. So that was a lot of preamble to answer this specific person’s question, but that’s because I feel like we had to clear, like lay it all out.

Dr. Emily Upshur (08:23):

The foundation. Yeah. But I think one important thing I’m hearing from you is like, and is embedded in this question is because it’s this medical thing should I wait until this medical thing has like stabilized and then start doing a space protocol type of treatment? Because I think when we think we actually think of them as separate, right? Medical issues and sort of like sort of the symptoms and mental health issues that are the OCD symptoms that are going along with this. And I think this is one of those, like you had described, the symptoms are OCD and so I think it’s really important to address that. I feel pretty strongly that it can only help that you start space treatment the earlier, the better. Even while you’re treating the medical … If your child, for example, a lot of kids with Panda Pans have a course of antibiotics. So like you don’t have to wait is sort of how I feel about that. You can sort of do that as a parallel process to the medical interventions that you might be receiving alongside.

Dr. Sarah Bren (09:34):

Yeah, because also space takes … I mean, on the things I like about space is that it’s a time limited treatment. So I think it’s like a lighter lift for a lot of people than maybe like a more ambiguous open ended long-term therapy, but it still takes about 12 to 15 weeks to go through the whole protocol and some of it is a good amount of pre-work before you’re even doing the first kind of accommodation poll. You spend three-ish weeks just kind of orienting to the process, identifying all the places you’re accommodating, learning about supportive statements, figuring out which accommodation you’re going to pull and then creating a really comprehensive plan and stress testing that plan before we … And then writing the announcement letter because we share with the kid that this is what’s going to happen and then we pull the accommodation. So you might be a few weeks in before you even have to interface with your child in this therapeutic intervention.

Dr. Emily Upshur (10:35):

Well, I also think this parent is … Yeah. And I also think to exactly that point, like this parent has identified clothing and underpants specifically, but there’s probably, like to your point, like there’s probably a lot of other accommodations that are happening and it doesn’t have to be this one, right? If this one feels really, really high stakes because it’s tied to school, for example, and school feels more high stakes. I don’t know actually how old this child is, but in any case, like it doesn’t have to be that one. So the one thing that I think is so cool and really compelling about space is that we call them targets. So like the thing you’re choosing to not accommodate anymore in this case, the parent is bringing up underpants, but it could be something else. It can touch other ones. So even if this parent didn’t want to touch these clothing issues and they wanted to reduce, for example, like I’m going to not escort you to the bathroom anymore or common space sort of type targets, that could have a positive impact on these clothing issues. And I think that’s probably a less commonly understood thing that the exact things you’re working on aren’t the only things you’re working on. That there’s a ripple effect, a beautiful snowballing in the positive direction effect of some of these interventions.

Dr. Sarah Bren (12:06):

Yes. No, that’s actually a really important myth to bust about space because just about anxiety in general is that if parents are accommodating, then the goal is to on by one remove every single accommodation and we just kind of work our way through what could be a very long list. And like the reality is that’s not actually … The point of space is not … Even though the tasks embedded in the treatment are pulling back accommodations, the function of that isn’t to reduce accommodations in and of itself. The function of that is to expose the child to a safe amount of anxiety and help them integrate and internalize this sense of like, “Ooh, anxiety is tough, but I can survive this feeling.” I

Dr. Emily Upshur (12:51):

Can do it. Yeah.

Dr. Sarah Bren (12:52):

And then we generalize that internalized knowledge across a lot of other places and we see the anxiety or the OCD symptoms kind of go down across the board. In a standard space protocol, we pull about three accommodations and that usually is enough to see that generalization effect. So it might be helpful to know that because if there’s one particular super sticky thing that you’re really worried about or something that has a lot of impact perhaps on you, the parent, like I’m thinking about like things related to like the morning routine where a parent might have to, pulling an accommodation might put a parent’s ability to get to work on time at risk and that’s not maybe the one you pick or I do this a lot with sleep stuff and even though the primary thing is sleep stuff, I don’t like to start always. Sometimes I will, but a lot of times I’m not starting with the sleep stuff because I want to have like a low hanging fruit quick win kind of accommodation pull that doesn’t, because like the thing is, one, it gets everybody kind of warmed up.

(13:55):

It helps them understand the process. It helps them feel like, “Oh, okay, this works. I can do this. ” Both the parent and the child, but starting with sleep when sleep is a really tricky one, especially for like middle of the night stuff is that at two o’clock in the morning, are you going to be your best, most sort of resourced self to work on this accommodation poll?

Dr. Emily Upshur (14:16):

Yeah. I mean, what I always say to parents is do the thing that you feel you can do to fidelity. Don’t do the thing you’re most unsturdy about. You’re the most nervous about, you’re the most scared to disrupt because you won’t be able to do it to its … And that makes sense. I don’t mean that at all in a…

Dr. Sarah Bren (14:39):

Right. You might be able to do it as the third accommodation pool where you built up your confidence and your trust in that this like, oh, we can handle this, but starting there is not always necessary. And then there’s some times where I’m like, “This is where we need to start.” And that figure that out with a therapist you’re doing it with, but I just want to dispel any myth that like one, you have to start with the hardest thing, that there is only one thing and that’s what we’re here to treat because really we’re not here to treat getting the kid to school in her underpants. We’re actually here to like reduce the rigidity and increase the tolerance for distress and anxiety. And we could do that in other places and have it spill over to eventually maybe create more flexibility that we can then work on the underpants thing.

Dr. Emily Upshur (15:31):

Yeah. And I think the thing that’s so unique about pandas and pan pandas is like I have so much empathy for this parent because you’re right, it comes in hot. So it can feel really unexpected and can feel the feeling of a parent with a child who has OCD or anxiety that sort of grows over time is really challenging. It’s extremely challenging to have something like that pop up out of nowhere or pop up very with an intensity or acuity that feels really hard. So I would also say like take a deep breath, give yourself sort of take a beat and maybe look at, and this is a step in space, but sort of look at all, we call it accommodations mapping, but it’s like, let’s take a look at all the things we’re doing to sort of help with my child not feel anxiety or help ease.

(16:32):

Sometimes as a parent, like I’m just very conscientious that this parent might not have a lot of experience with anxiety, right? So it’s like helping this parent say like, “Oh, why am I doing this? Oh, every time I do this, the experience of the parent is sometimes, I can’t believe I’m doing this. I don’t know why this is happening.” And I just want to hold that in mind.

Dr. Sarah Bren (16:53):

You didn’t get desensitized to it over time because you’ve been learning your anxious kid for a really long time and it’s like, “Ah, we’re here again. Okay, let’s reset and readapt and kind of do some more exposures.” But yeah, it could be very much like, “Oh, I did not yet build this skillset to deal with this.”

Dr. Emily Upshur (17:15):

Yeah, I would encourage them to slow it down a little, really look at all the things and again, and if you need help, there are people that are space certified and trained to sort of be able to do that because I think pulling back that curtain and saying, “Oh, the underpants, that’s just one thing.” There’s so many things we can really create positive change. And I think the thing we haven’t explicitly said is we really see good results from this. We really see improvement and we really can treat these symptoms. And so it is really encouraging to start as soon as you can and as soon as you have the support to be able to do so.

Dr. Sarah Bren (17:55):

Yes. And the best way this mom is in the UK and the best way to find a space therapist, someone who’s either certified or has been trained in the space protocol by the team at Yale Child Study Center is to go to spacetreatment.net and I can link that in the show notes, but they have a provider directory and so that is where I would recommend going if to find like someone who is going to know how to help you do this well no matter where you live because I’m certain that there are people in the UK that have space training as well. They’ve really started to grow. And another good resource is the book that Ellie wrote. It’s called Breaking Free of Child Anxiety and OCD and he kind of walks you through in the book kind of how to do, how to like self-implement because you can, you can self-implement space.

(18:50):

I think it depends on what you’re dealing with. It’s sometimes very helpful to do it with a therapist, but you can always start with the book and then check out their website to find a provider in your area if you need more support. But don’t wait because it’s I honestly, I always encourage parents just who have, whether it’s PANS PANDAS or just anxiety or OCD, the more organic forms of it, I always tell parents start with space because it’s the lightest level of kind of a commitment and intrusiveness. It’s the lowest…

Dr. Emily Upshur (19:28):

Well, it’s also…

Dr. Sarah Bren (19:29):

It doesn’t ask you kids…

Dr. Emily Upshur (19:31):

Well, right. And the purpose of space is there’s not a demand on the child, right? So this child has been through a lot. They’ve had medical stuff going on and there’s probably lots of stuff that’s going on with them and I think it’s kind of nice that space helps the parent implement something on the parent side.

Dr. Sarah Bren (19:49):

Yes. I want to tweak a little what you said though, because when you say there’s not a demand on the child, specifically space doesn’t require the child to take a specific action. It’s not putting a demand on the child behaviorally, like saying you need to practice this exposure, you need to change your behavior. There is a demand on the child, but it’s more like experientially it’s taxing for the kid to have to experience the parent pulling the accommodations. I’d say that just because if it’s hard for your kid to go through this, that makes sense. It’s not demand free. It’s just we aren’t dependent on them actively participating and changing their behaviors effectively for this to be functional. They just have to experience the absence of your accommodation and they will feel a little bit of distress or a lot of bit of distress, depending on how reactive your kid is, about you not quote rescuing them from the anxiety or doing the thing that they are used to you doing.

(20:54):

But that is why I love space too, because it’s not just pull the accommodation and expose the kid, there’s a ton of emotional attunement and support that you give the child as you do not do this one behavior that they are really, really wanting you to do. So you’re not leaving them alone to kind of cope with it. You just aren’t doing this one behavior anymore.

Dr. Emily Upshur (21:17):

Well, right. And I think you’re not asking your child to specifically do a behavioral action or stop doing a behavioral action.

Dr. Sarah Bren (21:25):

Exactly. Which is I just, because demand can mean two things. It could be I demand that you do this thing or there’s a demand on the system.

Dr. Emily Upshur (21:36):

Yes, there is a demand on the system. But I do think it relieves a lot of worries from parents that you’re not trying to control your child and I think that’s a really important piece of SPACE.

Dr. Sarah Bren (21:48):

Totally. Well, this was a very interesting conversation. I enjoyed this a lot. You could tell Emily and I are a bit nerds about anxiety OCD. Pandas. Pants bandas. All right. Well, thank you so much for writing in. I hope this is helpful. Good luck. You’ve got this and we’ll see you all next week.

Dr. Emily Upshur (22:07):

Bye.

Dr. Sarah Bren (22:07):

Thank you so much for listening. As you can hear, parenting is not one size fits all. It’s nuanced and it’s complicated. So I really hope that this series where we’re answering your questions really helps you to cut through some of the noise and find out what works best for you and your unique child. If you have a burning parenting question, something you’re struggling to navigate or a topic you really want us to shed light on or share research about, we want to know, go to drsarahbren.com/question to send in anything that you want, Rebecca, Emily, and me to answer in Securely Attached: Beyond the Sessions. That’s drsarahbren.com/question. And check back for a brand new securely attached next Tuesday. And until then, don’t be a stranger.