Pediatric Autoimmune Encephalopthies
PANDAS and PANS are not only disabling disorders that threaten to tear families apart, they are a tricky, messy, mess for families and providers to wade through. Finding providers that communicate well and who have experience in PANDAS/PANS is necessary for effective treatment. I have researched PANDAS extensively and attended conferences on PANDAS/PANS in at Georgetown University in Fall 2016, and at Colombia University in Fall 2018, as well as virtual seminars since then.
I provide consultation for families and parent coaching for families concerned about PANDAS/PANS. I do not treat the children. That said, treating the family, supporting the parents, and learning parenting skills to deal with PANDAS/PANS children is half the battle.
When working with a kiddo and family who has PANDAS/PANS or is suspected of having PANDAS/PANS, I recommend the following priorities if you are not in an acute flare/crisis:
1 Start with the Body
PANDAS is not a behaviorally based problem: it is a medical disorder. Behaviors result from inflammation in the brain centers responsible for motor coordination, rage, memory, attention, anxiety/fight/flight, and appetite control. Interventions MUST start in the body with nutritional changes and medical interventions to decrease systemic intervention. Commonly this means to first treat the infectious trigger, and then to decrease inflammation. Often this means creating a team with a psychiatrist, pediatrician, and PANDAS expert (e.g. often you can find doctors specializing in PANDAS in the areas of infectious disease, allergy, or rheumotology or ENT).
2. Work on body-wide wellness
All children need sleep and food, but PANDAS kids need it more than any other. While this is not my area of expertise, I collaborate with other providers (e.g. nutritionists, holistic doctors, holistic psychiatrists, etc.) to support healthy eating and sleeping.
3. Support and Empower Parents
Being a parent of a PANDAS child is traumatic. I am not using that phrase loosely, so let me say it again. Being a parent of a PANDAS child is traumatic. You are holding and managing HUGE amounts of emotion, stress, confusion, fear, guilt and uncertainty. A big part of my job is helping to care for you and give you tools so that you can survive (and ideally thrive) in the hours I am not with you. Marriages are torn apart by this disorder, siblings are traumatized. This is a nasty, awful, devastating disorder. The family must be cared for.
Additionally, family therapy or individual therapy for the parents helps the child. It is not uncommon for parents to mourn their lost child and search for a cure that doesn't exist. Surviving the rages of a PANDAS child is incredibly taxing on everyone, especially siblings. Family therapy can help the whole system navigate this new reality. Individual therapy for parents or parent coaching is also hugely helpful. Learning how to parent a PANDAS child isn't in a textbook or parenting manual. It isn't intuitive. Parent coaching by someone well trained in PANDAS or Autism is suggested.
4. Use mental health interventions to help the child
PANDAS kids greatly benefit from learning coping skills to manage their mood, their sensory sensitivities, and their feelings of being out-of-control. We depersonalize the situation, helping them to understand how to separate "them" from "PANDAS" to minimize shame and self-criticism. We also work on problem solving, coping, and healing from the trauma of flares. This work CANNOT be done during a flare. During a flare, the child is in fight/flight/freeze and cannot be reasoned with or taught. When the child is in a flare, our interventions focus on safety planning, support of the family, and prevention of rages.
5. Attend to the systems the child is in
The family and school systems are both very affected by PANDAS flares. Other siblings may start acting out to compete for attention, or withdraw in the face of rages. The school may not know what to do to support the child. I also spend time focusing on these affected pieces of the child's life. The school must be involved in order to help the child. Some children cannot attend school for a full day, or in a mainstream classroom during a flare, but can when their functioning improves. The school MUST understand that PANDAS is a MEDICAL DIAGNOSIS THAT MANIFESTS BEHAVIORALLY and must be treated as though would a child who has diabetes or is blind. You don't shame a blind child for not being able to read, and a child in a flare must NOT BE SHAMED for throwing something in the classroom. It is not in their control. Often much work must be done with the school to help them understand this.
PANDAS is not easy to diagnose, nor is does it look the same in every kid which makes it incredibly tricky to identify and treat. Know you are doing your very best to figure this out and many doctors don't understand this auto-immune disorder. While facebook groups and support groups can help normalize and validate how difficult the experience is, be careful not to fall victim to comparing yourself or your child to others. Find support for yourself whenever you can.
PANDAS does not go away, but it does get better, and can be manageable when well treated. Creating a treatment team that you trust is an important first step.
I provide consultation for families and parent coaching for families concerned about PANDAS/PANS. I do not treat the children. That said, treating the family, supporting the parents, and learning parenting skills to deal with PANDAS/PANS children is half the battle.
When working with a kiddo and family who has PANDAS/PANS or is suspected of having PANDAS/PANS, I recommend the following priorities if you are not in an acute flare/crisis:
1 Start with the Body
PANDAS is not a behaviorally based problem: it is a medical disorder. Behaviors result from inflammation in the brain centers responsible for motor coordination, rage, memory, attention, anxiety/fight/flight, and appetite control. Interventions MUST start in the body with nutritional changes and medical interventions to decrease systemic intervention. Commonly this means to first treat the infectious trigger, and then to decrease inflammation. Often this means creating a team with a psychiatrist, pediatrician, and PANDAS expert (e.g. often you can find doctors specializing in PANDAS in the areas of infectious disease, allergy, or rheumotology or ENT).
2. Work on body-wide wellness
All children need sleep and food, but PANDAS kids need it more than any other. While this is not my area of expertise, I collaborate with other providers (e.g. nutritionists, holistic doctors, holistic psychiatrists, etc.) to support healthy eating and sleeping.
3. Support and Empower Parents
Being a parent of a PANDAS child is traumatic. I am not using that phrase loosely, so let me say it again. Being a parent of a PANDAS child is traumatic. You are holding and managing HUGE amounts of emotion, stress, confusion, fear, guilt and uncertainty. A big part of my job is helping to care for you and give you tools so that you can survive (and ideally thrive) in the hours I am not with you. Marriages are torn apart by this disorder, siblings are traumatized. This is a nasty, awful, devastating disorder. The family must be cared for.
Additionally, family therapy or individual therapy for the parents helps the child. It is not uncommon for parents to mourn their lost child and search for a cure that doesn't exist. Surviving the rages of a PANDAS child is incredibly taxing on everyone, especially siblings. Family therapy can help the whole system navigate this new reality. Individual therapy for parents or parent coaching is also hugely helpful. Learning how to parent a PANDAS child isn't in a textbook or parenting manual. It isn't intuitive. Parent coaching by someone well trained in PANDAS or Autism is suggested.
4. Use mental health interventions to help the child
PANDAS kids greatly benefit from learning coping skills to manage their mood, their sensory sensitivities, and their feelings of being out-of-control. We depersonalize the situation, helping them to understand how to separate "them" from "PANDAS" to minimize shame and self-criticism. We also work on problem solving, coping, and healing from the trauma of flares. This work CANNOT be done during a flare. During a flare, the child is in fight/flight/freeze and cannot be reasoned with or taught. When the child is in a flare, our interventions focus on safety planning, support of the family, and prevention of rages.
5. Attend to the systems the child is in
The family and school systems are both very affected by PANDAS flares. Other siblings may start acting out to compete for attention, or withdraw in the face of rages. The school may not know what to do to support the child. I also spend time focusing on these affected pieces of the child's life. The school must be involved in order to help the child. Some children cannot attend school for a full day, or in a mainstream classroom during a flare, but can when their functioning improves. The school MUST understand that PANDAS is a MEDICAL DIAGNOSIS THAT MANIFESTS BEHAVIORALLY and must be treated as though would a child who has diabetes or is blind. You don't shame a blind child for not being able to read, and a child in a flare must NOT BE SHAMED for throwing something in the classroom. It is not in their control. Often much work must be done with the school to help them understand this.
PANDAS is not easy to diagnose, nor is does it look the same in every kid which makes it incredibly tricky to identify and treat. Know you are doing your very best to figure this out and many doctors don't understand this auto-immune disorder. While facebook groups and support groups can help normalize and validate how difficult the experience is, be careful not to fall victim to comparing yourself or your child to others. Find support for yourself whenever you can.
PANDAS does not go away, but it does get better, and can be manageable when well treated. Creating a treatment team that you trust is an important first step.
Dr. Griesemer has presented on PANDAS at Austin Child Guidance Center, Central Texas Eating Disorders Specialists, and at the Texas Psychological Association. She has attended the PANDAS conference at Georgetown University in Washington DC, and at Colombia University in NYC. She wrote the forward for "Somewhere in There" by Melissa Nolan, a book describing hopeful stories of PP children and their families.
Books on PANDAS/PANS
Please note that many current books on PANDAS are written by lay people and have medical and psychological inaccuracies in them. They are a starting place, but we have a long way to go in having accessible, accurate information available to parents. For that reason, my list below is rather short.
This is my favorite book for understanding how school is affected by PANDAS and how to intervene. There are other PANDAS books, but I find this one the most medically accurate and helpful.
What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD (What-to-Do Guides for Kids)
by Dawn Huebner et al.
This is a great short book for kids to understand OCD.
What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD (What-to-Do Guides for Kids)
by Dawn Huebner et al.
This is a great short book for kids to understand OCD.
Websites on PANDAS/PANS
DIAGNOSIS
PANS definition with school suggestions from NE PANS/PANDAS Association; also here
Video discussion of PANDAS at the NIH
Other suggestions for diagnostic criteria:
http://www.webpediatrics.com/pandas.html
One Parent's Story
http://www.pandasnetwork.org/
NIMH PANDAS site
The International OCD Foundation
PANDAS Physicians Network
Dr. Swedo's talk on PANDAS
PANS definition with school suggestions from NE PANS/PANDAS Association; also here
Video discussion of PANDAS at the NIH
Other suggestions for diagnostic criteria:
http://www.webpediatrics.com/pandas.html
One Parent's Story
http://www.pandasnetwork.org/
NIMH PANDAS site
The International OCD Foundation
PANDAS Physicians Network
Dr. Swedo's talk on PANDAS
Austin, TX Pandas and Pans Friendly providers
Doctors
Dr. Emily Gutierrez, at Neuronutrition Associates
Dr. Kendal Stewart, at Neurosensory Centers
Dr. Pugh, Family Practice Doctor, at Central Family Practice
Dr. Taylor, Texas Integrative Medicine
Dr. Julie Reardon
(Out of Austin Providers to consider: Charles Hughes in Houston, Dr. Rao in Dallas, Dr. Latimer in D.C., Dr Kovacevic in Chicago, Amy Joy Smith in California)
Dr. Kendal Stewart, at Neurosensory Centers
Dr. Pugh, Family Practice Doctor, at Central Family Practice
Dr. Taylor, Texas Integrative Medicine
Dr. Julie Reardon
(Out of Austin Providers to consider: Charles Hughes in Houston, Dr. Rao in Dallas, Dr. Latimer in D.C., Dr Kovacevic in Chicago, Amy Joy Smith in California)
Therapists
We provide therapy for families and kids struggling with PANDAS, but other options include:
Tamra Zehner, LCSW - has worked with many PANDAS cases in individual and family therapy
Ginny Fullerton, PhD - has worked with a great many PANDAS cases in individual therapy. Specializes in CBT.
Mackenzie Meyer, LPC
Adrienne Clements - extensive experience with autoimmune disorders and Lyme
Tamra Zehner, LCSW - has worked with many PANDAS cases in individual and family therapy
Ginny Fullerton, PhD - has worked with a great many PANDAS cases in individual therapy. Specializes in CBT.
Mackenzie Meyer, LPC
Adrienne Clements - extensive experience with autoimmune disorders and Lyme
Psychological Testing
Psychiatrists
Nutritionists and Homeopaths
Occupational Therapists and Sensory
Facebook support groups
For Providers:
| PANDAS vs Eating Restrictions |
| TPA Conference |
Although we know and recommend these providers, we can provide no guarantee about the services they provide.
