PANS PANDAS Parents & Therapy

Therapeutic Strategies for PANS PANDAS Parents with Julie Cox, LCSW

ASPIRE sits down with Julie Cox, LCSW, to discuss why therapeutic strategies can be beneficial to PANS PANDAS parents and caregivers, how not to pathologize everything, and ways to accept that the healing journey is often slower than we would like it to be.

Gabriella: I am delighted to sit down with Julie Cox, a PANS & Lyme mom, and a social worker. I have gotten to know Julie over the past few years as parents have recommended her, and through her Facebook group, she hosts for fellow PANS/PANDAS parents.

Julie, can you tell our ASPIRE community a little bit about your PANS/PANDAS journey?

Julie: Hi Gabriella, thanks so much for having me! I am very grateful for all that you are doing with ASPIRE for PANDAS/PANS families. Our family has a long history with PANDAS/PANS. Like many fellow PANDAS/PANS parents, it has been a long journey of seeking answers. I am grateful that after about a 15 and 1/2 year journey, we are pretty much into recovery. We have been lucky in many ways.

Gabriella: How do you think being a therapist helps you weather the storm of parenting and supporting a child with PANS?

Julie: It was fortunate that I was working with young children as a social worker/therapist when we realized we were having issues with our own child. In my work, I was being exposed to kids with various developmental diagnoses, so I was able to have my own child assessed very early. I had been a social worker for about three years at that point (in 2004), but prior to that, I had worked in medical research for eight years, so I was a researcher at heart. It was in my makeup to keep digging for more information and not be satisfied with answers that didn’t seem to fit for our family. I kept asking myself and the practitioners questions such as “Why did my child only show delays intermittently? Why was there this vacillation of symptoms?” It didn’t make sense. I just kept reading and researching for answers, mostly out of desperation. I called anyone who I thought could help! I had heard about DAN (Defeat Autism Now) because although we didn’t have an autism diagnosis, my child was looking very PDD (Pervasive Developmental Disorder) to me, and I knew that early intervention was key. I believe I read an article by Sidney Baker, MD, about how the spectrum diagnoses were much more complex than just behavioral diagnoses. I was intrigued, because I saw that my child was not gaining weight properly, never fed properly, always looked uncomfortable, had rashes, etc. I believe Dr. Baker also wrote about glutathione in his article. Ironically, when I worked at a National Cancer Institute research facility, I was working on glutathione and its impact on a cellular level. I felt that Dr. Baker was speaking the truth in a world of medicine that didn’t know how to treat the serious health issues that were going on for these kids. I called his house! Don’t even ask me how I got his number, who knows; I was a mom on a mission. I remember his wife answered and told me he didn’t take on new patients anymore. I cried and begged, and I think she got so aggravated with me that she got him to agree to see us. We drove 4 hours to see him. I believe my child was ten months old at that time and screamed the whole way (car rides were awful). Dr. Baker explained so much to me. He educated me about the gut-brain connection and how many factors had impacted my child. He advised me to start feeding my child organic chicken broth with pureed chicken in a bottle and helped us begin to deal with yeast overgrowth. We followed his advice right away, and after a short time, my child began to eat somewhat normally for the first time. What a relief! Some lost milestones were returning! How fascinating! I had always believed in the field of psychoneuroimmunology (aka the gut-brain immune system relationship), and now I could see the connection with my own eyes. Seeing such incredible results gave me momentum to seek more answers.

Since Dr. Baker was a long drive away from us, he referred me to someone he was mentoring, named Dr. Nancy O’Hara. We have worked with Dr. O’Hara since, in addition to many other doctors and practitioners, to cover the many areas that PANDAS/PANS encompasses. As far as being a therapist, since I completed a specialty in the treatment of children in graduate school, I had a lot of tools to work with kids. I applied my knowledge and tools at home in many forms—play therapy, behavioral interventions, social skills training, executive functioning assessment and intervention, CBT/exposure work for the fears and anxiety, etc. I was lucky that this was my field, and I could apply these tools to some degree on my own. We also sought out therapists to help our child gain skills and deal with anxiety, OCD social skills, low self-esteem, and defiance.


Why therapeutic strategies can be beneficial to PANS PANDAS parents and caregivers

Gabriella: When we talk about the three-pronged approach to PANS/PANDAS treatment, we are always focused on the patient. But we know it actually affects the entire family. Can you give us a brief overview of why parents and caregivers should learn how to employ therapeutic strategies and why they are beneficial?

Julie: Yes. I found that as a PANDAS/PANS parent and for the families I work with, that helping the parent(s) get emotionally regulated is incredibly important. I was often in fight or flight, and I was not effective in using strategies for my child and family until I was able to calm myself first. I like to use evidence-based therapy interventions with families such as DBT (Dialectical Behavior Therapy) skills, which include mindfulness and distress tolerance tools. The nice thing about DBT is that the skills are typically acronyms, so they are pretty easy to remember when we are under stress.

I also use ACT (Acceptance and Commitment Therapy) skills with families and parents. One of the principles of ACT is: “pain is inevitable, but suffering is optional.” ACT helps you accept your current reality, as painful as it is so that you are not constantly spending energy to fight the current circumstances and extend your pain and create more anxiety. ACT also emphasizes taking actions that are in line with your values to prevent feelings of guilt or anxiety. ACT also offers “defusion” techniques that I teach families to help them create dual awareness of their current circumstances yet maintain hope for the future.

The mindfulness components of DBT and ACT lend themselves to a higher level of self-observation so that we can recognize and slow down our reactions to the current PANDAS/PANS situation at home. However, it takes time to learn how to slow that reaction in ourselves as parents so we have to practice compassion with ourselves and observe ourselves non-judgmentally.


Healing from PANS/PANDAS – Starting low and going slow

Gabriella: As parents, we want to heal our kids as fast as possible and get back to normal or at least out of the torment of PANS/PANDAS. When healing doesn’t happen quickly, flares go on for longer than a month, or we are experiencing flares back to back, our stress compounds, and our ability to be resilient wanes. Plus, our kids feel the weight of the illness even more as time goes on. We have heard many times that healing is a marathon and not a sprint, but how do we work on reframing our mindset to not just hear that phrase but to incorporate it into our lives and our kids’ healing?

Julie: It is important to accept that recovery can be a slow process, and we often have to slow down the pace. I am guilty as well of the fast and furious approach with my child! And then I would beat myself up when I did it! Two approaches that were not helpful, but we must understand that there is an innate drive to protect and heal our child, and it’s a very important drive. We can’t ignore it; we just have to pace it. It’s similar to learning how to press the gas and brake pedal in a car—we don’t floor it to go forward, and we don’t slam on the brakes to stop. Slow and easy does the trick.

I had to begin to recognize micro-changes in my child and help families recognize this as well. There is a lot of grief that comes up when we try to do this because the loss of what we wish our child could do or was able to do previously comes right up when we have to slow down and accept their pace. Allowing that grief process is very important. Many are familiar with the grief stages that include sadness, anger, bargaining (if only I had…or if only they had…) depression and finally, acceptance. The majority of the time, these emotions do not come separately or in order. That can make the process challenging to recognize and process. Working through the stages of acceptance will help us be mindful of slowing down and not moving into reaction.

Zones of Regulation for PANS PANDAS Parents

Zones of Regulation for PANS PANDAS Parents PDF

Acknowledging the feelings of loss and expressing them (with another PANS parent, a safe friend, or even a therapist) will take some of the pressure off of wanting to achieve change faster than is possible. Using stress management techniques (mindfulness skills, breathing skills) as well as physical activity to discharge pent up feelings can also help with this. I also like to teach parents how to identify what “zones of regulation” they are in and ways they can get themselves back into the “green zone of regulation”.

If we do try to force changes, we can forgive ourselves and remind ourselves that “slow and steady wins the race” Sometimes we end up having to undo changes that we have attempted if we push too hard too fast, but we have to forgive ourselves and learn from it the best we can.

 


PTSD and how to not pathologize everything our kids do

Gabriella: The typical course of PANS/PANDAS is one that relapses and remits, often with a sawtooth recovery, even though some patients have only one flare while others fall into a chronic-static state.

Let’s talk about what happens between those flares. Sometimes someone will flare several times a year while others don’t have another flare for years. Since we never know how long it will be until the next flare, what will trigger it, how long will it last, or even if we will be able to fix it, parents and patients are often left in a state of constant worry, constant dread. We become hyper-aware of every cough, every sore throat, every meltdown, every sign of a compulsion; we are always on the lookout for the next flare or signs that the current flare is indeed getting worse.

How do we not pathologize every single thing that happens to our kids? Why is it so easy to automatically do so? What are the tools we need to learn to help minimize this?

Julie: Since our families have been through repeated losses and traumas related to PANDAS/PANS, our nervous system is on high alert for signs and symptoms related to P/P. It’s important to be gentle with ourselves as we learn new ways of responding. When our nervous system is in fight or flight, we don’t always have an accurate perception of what is occurring. We are “primed” to see signs that our PANS child seems “off” and sometimes it’s very important to attune to this and acknowledge it, but the key is to find the “middle path” of recognizing and considering that we may be seeing PANS symptoms but to wait before we react. This ability to self-observe and not react goes along with the skill of learning to “coregulate” with our P/P/L child, which means attending to the situation at hand and mindfully adjusting ourselves to understand our PANS child without overreacting. When we as PANS parents get better at this, our PANS kids also get better at being able to “control” their nervous system. This means fewer meltdowns, better cooperation, and better mood states. So as I said, the mindfulness components of DBT and ACT lend themselves to a higher level of self-observation so that we can recognize and slow down our reactions to the current PANDAS/PANS situation at home.


Julie Cox, LCSW

As an undergraduate, Julie attended Binghamton University and majored in psychology. After college, she worked for 8 years in medical research at UCLA Medical Center, Columbia University Medical Center and a National Cancer Institute, where she was an Assistant Research Scientist and co-authored several research publications. When Julie realized that her passion was to work face-to-face with people instead of in the lab, she pursued her Master’s in Social Work at Fordham University. At Fordham. She completed a specialization in the research department at Fordham called Children FIRST: https://www.fordham.edu/info/23860/children_first. Over the last 20 years as a therapist, Julie has continued to train and refine her approaches to helping families reach their goals by completing several certifications in CBT (Cognitive Behavioral Therapy), DBT (Dialectical Behavioral Therapy), ACT (Acceptance and Commitment Based Therapy), EMDR (Eye Movement Desensitization and Reprocessing) and Attachment Based Interpersonal Neurobiology. All of these treatment approaches are evidence-based.

 

Leave a comment