Surviving PANS PANDAS: Ask Eileen
Surviving PANS PANDAS: Ask Eileen
A column for parents of children with neuroimmune disorders to anonymously ask their pressing questions to therapist Eileen Devine.
Anything related to parenting children with neuroimmune disorders is fair game–managing behavior, sibling issues, relationships, grief, loss, trauma, PTSD, etc.
Eileen Devine, LCSW has over 15 years of clinical experience and is the mother of a child with significant neurobehavioral challenges. She believes that kids do well if they can and that when we understand the way a child’s brain works, we then understand the meaning behind challenging behaviors. Eileen’s goal is to not only support parents of children with challenging behaviors in feeling more competent and confident in connecting with their child by parenting from a brain-based perspective, but to also recognize their experience as the parent of a child with extraordinary needs and the impact this has on their sense of self and well-being.
Eileen is a certified facilitator in the teaching and application of the neurobehavioral model and has also completed Tier 1 training in Think:Kids Collaborative Problem Solving. She is an instructor for the Post-Master’s Certificate in Adoption and Foster Therapy through Portland State University’s Child Welfare Partnership, training other therapist on the neurobehavioral model. Besides working one on one with parents, she is also the founder of the membership community The Resilience Room where parents come to learn more about the neurobehavioral parenting model and receive support from other parents with their same lived experience.
Our daughter is in first grade and has had PANDAS for two years. After a disturbingly acute onset that lasted 7 months, we are now lucky that she has a lot of easy days where her behavior seems typical for a child her age. Unfortunately, when she has a flare, her behaviors are dramatically different. This has caused a lot of unanticipated classroom disruption and play date disruption. We have lost several close friends of hers over this. I feel like parents and educators have a hard time processing and really don’t know how to relate when a child is only symptomatic sometimes or more symptomatic at certain times. How can we best prepare her teachers and classmates for the reality of having a PANDAS child in their life? We really feel like supportive community is a cornerstone of a healthy child’s life and want to help her build and maintain one.Feeling isolated,Tracey
Eileen: This is such a great question that many parents I work with struggle to answer. When a child has an invisible disability or illness that is brain-based, with only behaviors as the symptoms, it is already confusing for those around them and leaves them very vulnerable to being misunderstood. When you add in the element of periods of remission followed by a flare, it only adds to the confusion and misunderstanding. I believe others are capable of learning about this illness and these unique elements and are capable of seeing these children from a brain-based, neurobehavioral perspective; however, it takes an enormous amount of energy and persistence on the parents’ part to facilitate this. The best way I have found to educate others is starting with what neuroscience research tells us about brains that work differently (that it is a physical disability requiring accommodations and that behaviors are symptoms and not intentional and willful) and then moving into the more specifics about what this means for my child. What behaviors let you know she is in a flare? What cognitive skills does she struggle with when she’s not doing well and how do you accommodate her? How do you respond to her or support her differently when she’s in a flare vs when she is not (and this includes how you adjust expectations during this time)? I suggest writing it down for them to reference later. In these moments, I try to remember that it took time and a lot of repetition for me to learn what it meant for my child that she has an invisible, physical disability of the brain, so others around her likely need time and repeated education to “get it”, too. I try to not be reactive in my responses and instead use it as an opportunity to help them shift their perspective a little more each time. And, I also remind myself that there are some people who are so deeply ingrained in the behavioral lens that they can not make this shift and when I realize that about a particular person, I need to move on and try to find peace with this (not an easy task!).
My child is extremely reactive with disproportionate responses to everything. He flies off the handle very easily. How can I help him slow down his responses and reactions and respond a bit more calmly to challenges?
Eileen: When our child has a brain-based illness that is impacting their abilities from a cognitive skills standpoint, one of the common behavioral symptoms of this is the low frustration tolerance and emotional dysregulation. The ability to manage our emotions (disappointment, fear, or even excitement) and the ability to slow down our reactions in the moment is an executive functioning skill. It requires impulse control, cognitive flexibility, and a wide window of frustration tolerance. If our child does not have these skills in place, the first piece we want to consider is what is leading him to fly off the handle and pro-actively approach that situation differently. I understand that it can appear as though this happens randomly or comes out of nowhere, but there are always patterns that connect back to our child’s unique brain functioning and lagging skills. One way we can start to tease out those patterns is through observation and reflection, taking 5 minutes a day to write down what we observed so we can then see the best points of intervention. If your child is in the midst of a rage or meltdown, please remember that the best use of your precious energy is to stay regulated yourself so that you can then help them calm down their fragile nervous system. When they have “lost it” their thinking brain is off line so they can not follow your directions, listen to your words, answer your questions or call upon coping skills. This is why I want you to save yourself the work of trying to get them to “do” and simply “be” with them to help them come back down. This is the power of co-regulation and we will be taking in more depth about it on an upcoming webinar.
My child with PANDAS will be 12 in one month and has started puberty. She was doing well but has had a relapse after a summer virus. While this relapse is not as bad as previously, it is really hard to deal with because it seems she has no feelings at all. She says the most hateful things to my husband and I and when we try to talk about it, she becomes even angrier and hateful. How do I know the difference between a P/P reaction and Puberty/becoming a teen? Under normal circumstances she is a very sweet daughter who verbally displays gratitude and kindness.
Eileen: Ugh. Hormonal changes in our children are difficult to navigate even when there are not other complicating factors, but to have these changes layered on top of significant neurobehavioral differences is beyond challenging. With that being said, I do not believe that the core of who our children are change because of hormones alone. They do not (especially in a very short period of time) go from being the sweet child you describe your daughter being, who has the ability to display gratitude and kindness, to a child who is angry, hateful and easily provoked. This definitely leaves me curious about those challenging behaviors and what it would mean for you as the parent if we knew for certain it was due to her virus plus hormones vs intentional disrespect and rudeness. When parents I work with are trying to determine what is brain-based behavioral symptoms vs typical “misbehavior” and they really can’t be sure, I always encourage them to go down the path of believing it is a symptom of the brain-based illness and parenting from that lens. The reason for this is because what we know about that approach (the neurobehavioral approach) is that it will promote connection and co-regulation (meaning, if we remain calm and empathetic, we can then help our child regulate and settle). All of us are wired to be in connection with others, including your daughter and parenting from this lens opens up and encourages that possibility. If we decide it is willful behavior that she is able to change if she chooses to, it leads us to exerting our control and power through consequences, punishment, lecturing – leading to disconnection and a ruptured relationship. That doesn’t get her or you anywhere in having things get better. So, if you were to assume her anger and hateful comments are due to her experiencing some type of internal angst, pain and discomfort, then what would you do to alleviate that? Where does she struggle with lagging cognitive skills? Some ideas might be to use fewer words in talking with her (talking can be irritating to an already overloaded brain because verbal processing is such a heavy cognitive load), stop engaging in any fighting with her if that’s part of the pattern, and find ways to lead with empathy and connect with her that she can tolerate (for example, sending her written or text messages vs trying to have a conversation). Try your best (I know this is hard) to wait on the “it wasn’t ok how you treated us..” conversation until you see her start to return to her regulated, pleasant, and connected (to you) self. There will be a time and a place for that conversation, but if she is not regulated and relating to you, her ability to reason is off the table because her thinking brain is not online. Knowing that this isn’t possible in every situation, the next piece I’d be curious about is whether or not there are things you know will take him out of this behavioral loop he is stuck in. When the brain is stuck in this way, the “squirrel phenomenon” of distraction can sometimes prove to help them get unstuck and this often works best when it involves a complete change of environment. I would encourage you to not get discouraged if it doesn’t work the first time – it often takes several attempts to figure out what can help them get out of the loop.
There are things my child wants to do during a flare that are not allowed (usually it’s a project that is extremely messy, extremely expensive, problematic for our HOA or otherwise). We literally cannot stop him from doing whatever he has in his mind that he’s going to accomplish unless we are physically preventing him from carrying out that plan by guarding the materials or whatever else. This is impossible because we cannot even use the bathroom or he will continue. What should we do?
Eileen: This is obviously an incredibly challenging situation and I am not sure there is one “fool-proof” solution. The first and perhaps most obvious suggestion I would have is to be as proactive as possible. If there are patterns to his behavior during a flare as to what he becomes obsessive and fixated on, then removing those objects from the home as much as possible would be ideal.
Knowing that this isn’t possible in every situation, the next piece I’d be curious about is whether or not there are things you know will take him out of this behavioral loop he is stuck in. When the brain is stuck in this way, the “squirrel phenomenon” of distraction can sometimes prove to help them get unstuck and this often works best when it involves a complete change of environment. I would encourage you to not get discouraged if it doesn’t work the first time – it often takes several attempts to figure out what can help them get out of the loop.
I have a child who has completely over the top reactions to certain things (my perception). I understand that to her, the reaction is not out of proportion to how she’s feeling but for everyone else in the family, it becomes very stress inducing to listen to wailing and sobbing over what most kids would probably not shed a tear over. It lasts a long time and drives up everyone’s blood pressure including PANDAS siblings. It takes everything in me not to say “enough already! This is ridiculous!” Do you have any suggestions for how we can approach my daughter and how the rest of us can keep from going crazy?
Eileen: I know how stressful this can be on a person and the entire family. I think it is helpful in those moments to remember that, like so many of the distressing, frustrating, confusing or aggravating behaviors, this too is a symptom of a brain that works differently. Our brains are what help us stay emotionally regulated or “in check”, dealing with intense emotions in socially appropriate ways. Our brains are what help us tolerate frustration and disappointment without completely losing it. It’s what helps us recover when things don’t go our way without melting down (crying, yelling, raging). With this brain-based perspective mind, it’s helpful to keep sight of the “three Rs” in these moments. Your child must be REGULATED in order to listen, learn, or respond to your requests. If they are dysregulated, lecturing or insisting that they reason or change their behavior will not work and usually makes it worst. As the parent, the best thing you can do in these moments is to stay present, breathe steadily, focus your attention on your child, with your entire focus being on helping them regain their calm. The second “R” is RELATE. They need to be relating to you before they can use their thinking brain. Try getting down to their level (eye level) and doing what you know helps them feel connected to you (physical touch, sitting nearby quietly, soothing words, etc.). Then, when the child is regulated and relating to you, they can then REASON. This is when you can gently talk to them, always leading with empathy, discussing what happened, and ideas on how you can support them through the upset next time. I would encourage you to still use short sentences and focus on connection (vs lecturing) during this time. If you practice this, I think you will find that the periods of dysregulation are less frequent, less intense, and shorter in duration when you are able to co-regulate and support your child in this way.
I am starting to understand the relationship aspects of the neurobehavioral approach but wanted to ask if you have suggestions for how to set up the home or school environments to best support this approach.
Eileen: My response to this very thoughtful question might be frustrating to some parents because of our understandable desire for immediate, clear answers, especially when things are not going well for us, our child, and our family. But if I were to give you a list of suggestions that were not specific to your child and were more general in nature to simply go and try, perhaps a few would work, but the vast majority of them would not or not for any great length of time because they were not created specifically for your child and all the ways in which their unique brain works differently. That really is the most central and key aspect of the neurobehavioral model: understanding our child’s brain, how it works differently, how this can result in a poorness of fit in their environment and what we can do to develop proactive accommodations for them which then, over time, calms down the challenging behaviors. So the answer to your question really is answered with a few additional questions. How does your child’s brain work differently? Which cognitive skills do they struggle with due to their illness? Is it sensory overload, dysmaturity (being a younger age socially and emotionally), or executive functioning or some of all three? Are they very concrete and cognitively inflexible (unable to compromise, can’t let go in an argument)? Do they have slower verbal processing pace and/or difficulty with their learning and memory (following multiple step directions, learning rules and applying them consistently, etc.)? Once you know this, you have more information on how to set up any environment to accommodate for their brain differences, looking at where these lagging cognitive skills may get in the way of them being understood fully and being able to meet the expectations of the environment. For more information on the neurobehavioral model itself, I’d encourage to watch our prior webinars. For information on how to apply the neurobehavioral model to a school setting, I’d encourage you to watch our Back To School: Supporting Children With Neuroimmune Disorders in the Classroom webinar.
I realize this is a lot to answer concisely, but what would be your top three suggestions for teachers who have a student with PANS/PANDAS and who want to use a neurobehavioral approach in the classroom?
Eileen: There is so much that can be said about the positive impact that a teacher can have in a child’s life by using a neurobehavioral approach in the classroom, and although it’s difficult to narrow it down to the top three, I will do my best.
1.) It is imperative that the teacher understand what it means to truly operate from a neurobehavioral perspective of: if this child could do better, they would. If they are having a rough day (which is made evident through challenging behavioral symptoms), we can assume there is a poorness of fit for them in that environment and that they are requiring accommodations to be successful. This also means understanding that to hold this perspective all of the time is difficult and takes intentionality and self-reflection. Do you (teacher) know what your triggers are when it comes to challenging behaviors? Do you know what throws you out of the “kids do well if they can” mindset? Seek out support and supervision from other teachers who also believe in this approach. Brainstorm with them accommodations for that particular child. Don’t be ashamed of not knowing what to do at times to help them – while we are not expected to know everything, we do have a responsibility to actively work to find neurobehavioral-based solutions when the child requires it.
2.) Directly related to point number one is to involve the parents in the problem solving so you have a collaborative, brain-based approach at home and school. This may mean inviting them in for regular meetings to check-in and come up with proactive plans and solutions to prevent problems from occurring as much as possible (instead of scheduling meetings in reaction to crisis). In my experience, there are accommodations that work at home that can transfer over to the school environment and vise versa. You may never know of them if you don’t let the parents know you need their input and expertise in this area.
3.) It is essential to get clear on how this student’s brain works differently and what that means for their experience of your classroom. Are you clear – crystal clear – on which cognitive skills or brain tasks are especially challenging for this child due to their illness? We can often pinpoint the situation or event where the meltdown or out-of-control behavior occurred, but if there is no awareness of what this behavior was in reaction to and how this is connected to brain function, it will result in you constantly reacting to the behavior vs preventing it. This is often times where the wisdom of other colleagues and parents can come into play. Lastly, I’ve written a blog post on this topic that might be helpful for additional strategies in working with teachers.
We have an environment that I would describe as being void of rules. My wife would disagree and say we do have rules (that one of our children follows very consistently) but my son basically refuses to follow them and when we give him a consequence, he flies off the handle into a rage much of the time. Yesterday for instance he wanted to pull garbage out of the trash and I told him absolutely he could not do that. Obviously this is absurd and something he should be able to accept but it set off WWIII. How do we go about actually getting him to comply with our very reasonable rules?
Eileen: You have described a dynamic that I see with so many of the parents I work with and while there are many pieces to consider when trying to understand the other’s perspective, I’ll try to focus on a few related themes I see come up most often. When I am listening to parents talk about challenging situations with their child, I listen for words that are rooted in our deeply held beliefs and values because this is often times where we see the biggest clash with our child’s behaviors and where we are thrown out of the neurobehavioral mindset. Words or phrases such as “void of rules,” ” refuses to follow,” and “getting him to comply” all reflect our ideas on what is good, right, and appropriate. If our child’s behavior clashes with these ideas, we have strong emotional reactions because we are viewing the behaviors as willful and intentional rather than symptoms of their brain-based illness. It happens to all of us – no one is exempt – because we are human. This is, I believe, why the neurobehavioral model of parenting is so very hard. Have you and your wife talked about your values and where you know the neurobehavioral way of parenting clashes with these values? Are you each cognizant of your triggers so that you can reduce your reaction to these particular behaviors or situations as much as possible in the moment? Do you understand the brain tasks that your child has difficulty with and how this plays a role in their inability to handle consequences, comply with your requests or follow your rules? If you are able to trust that your child would do well if they could in these moments, what are some reasons they may not be doing well?
Another significant element that plays into what I believe you’re articulating is that fair does not always mean equal. When we have a child with a significant disability, they must be parented differently than our neurotypical children. Their brain-based illness requires this of us. This does not mean we excuse inappropriate behavior (the neurobehavioral model is never an excuse for “bad” behavior), but it does mean we approach it from this alternate lens. We know based on neuroscience research that there are seemingly easy expectations that our children with brain-based illness can not meet due to their illness. Complying with rules, adhering to consequences, and regulating their emotions are three very common ways this can present itself. Fairness in parenting means we do what we need to do for each of our children to ensure their needs are met and this includes teaching them what is good, right and appropriate. How we go about accomplishing this is going to look much different between our children and that’s okay as long as we’re meeting each of their needs in the ways they require.
Lastly, I would encourage you and your wife to reach a blog post I wrote on this topic: Parenting at the Intersection of Values and Behaviors and to watch a previously recorded webinar on our values, our child’s behavior and our emotional response.
One of the difficult parts of my child having PANS is that consistently I am told it is my poor parenting skills, lack of behavior management abilities, or some other defect in my parenting causing my daughter to behave this way. I know this is not true and have two other children who are extremely well behaved but all the focus is on how we’ve failed with my daughter with PANS. How can I address all the criticism from grandparents, friends, neighbors, teachers, etc. in a way that they understand? It is difficult dealing with not only a lack of support but outright constant criticism.
Eileen: The stress we experience from others being critical of us and our parenting is immense and only adds to the trauma of this parenting experience. It is a heartbreaking struggle for almost every parent I work with, so please know you are not alone. I think the first thing I would encourage is for you to be confident in the way you parent your child with PANS differently, knowing that what works for neurotypical children not only fails with him or her, but can often times make things worse. The second related thing I would encourage you to do is to remain confident in this approach by remembering that the neurobehavioral approach to parenting is rooted in neuroscience research meaning, brain changes equal behavioral symptoms (with these behaviors frequently being challenging, intense, confusing, bizarre and/or embarrassing). I would encourage you to gently try to educate others who don’t understand and keep in mind that they are missing information just as most of us (as parents) once were about our child and why they act the way they do. I would encourage you to be vulnerable with those closest to you and let them know exactly what you need and what you do not need from them. This allows us to be clear in our boundaries and good, healthy boundaries are what keeps us healthy in mind, body and spirit. And lastly, I would encourage you to allow yourself to really sit with the reality that not everyone will understand you or your child and that this isn’t your fault. It doesn’t mean you’re not a good parent. It doesn’t mean your child isn’t a wonderful, sweet kid. It means that understanding the full of impact of the PANS illness is beyond some peoples’ capacity and we need to allow ourselves to work through all the strong emotion that comes with that understanding. Be gentle with yourself and know that you are good enough, despite the messages coming from others.
I am really at a loss for how to handle discipline with my son who has PANS. It seems like he really does not have control over his behavior sometimes but I feel like a consequence or loss of privilege is required for damaging property or lashing out aggressively at family members. How do you suggest handling discipline when my son’s PANS symptoms are at their worst?
- In order to be considered for the column, questions must be limited to 150 words.
- Please note that Eileen is a therapist and does not prescribe medication nor answer questions about the medical management of any neuroimmune disorder.
- We regret that due to volume of questions, Eileen will not be able to answer each one. Please join one of her webinars to learn more. Each webinar will feature a Q&A time at the end.