OLDER POSTS

I've had a few questions and comments recently about PANDAS. I wanted to put together a collection of resources for PANDAS and PANS so that families, teachers, therapists, grandparents, and caregivers can easily find everything they need to know about this disorder. The links below are sites that describe more about PANDAS and PANS, including diagnostic information, signs and symptoms of PANDAS, information on clinical trials, and places to find more help. PANDAS/PANS can be a confusing diagnosis, happening overnight and with dramatic and substantial outcomes. Use the information below as a starting point when looking for information on PANDAS.

This information is not meant to be a diagnostic tool or means for intervention. It is essential that concerned individuals seek consult from the child's pediatrician. This information is strictly a collection of information and a starting point when seeking out resources.

What is PANDAS?

PANDAS is an acronym standing for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. The disorder appears suddenly following a strep infection like strep throat or scarlet fever and results in obsessive compulsive disorder, behaviors, tics, and similar symptoms.

PANS, or pediatric acute-onset neuropsychiatric syndrome, refers to children with sudden onset of obsessive–compulsive and other neurobehavioral symptoms, including children with PITAND (pediatric infection-triggered autoimmune neuropsychiatric disorder), children with PANDAS, and children with exacerbations that are due to environmental or metabolic triggers.

Symptoms of PANDAS and PANS

There is not a predictable sequence of symptoms, but a child with a diagnosis of PANDAS/PANS may present with the following symptoms:

ADHD symptoms (hyperactivity, inattention, fidgety)
Sensory defensiveness
Attention difficulties
Hyperactivity
Impulsivity
Age-inappropriate behaviors
Obsessions
Choreiform movements
Separation anxiety (child is "clingy" and has difficulty separating from his/her caregivers; for example, the child may not want to be in a different room in the house from his or her parents)
Restricted eating or changes to eating patterns
Mood changes, such as irritability, sadness, emotional lability
Trouble sleeping, night-time bed-wetting, day-time frequent urination or both
Changes in motor skills (e.g. changes in handwriting)
Personality changes
Joint pains
Changes in occupational performance and performance skill deficits
Separation anxiety
Oppositional behaviors
Marked deterioration in handwriting or math skills
Urinary frequency/enuresis
Joint pain or stiffness
Sleep problems
Slow processing speed

How to Help a child with PANDAS/PANS:

Occupational Therapy can help with these symptoms and the difficulties as a result of PANDAS/PANS, as outlined here.

More information about PANDAS and PANS

This fact sheet breaks down diagnosis and treatment strategies.

This research library has a comprehensive collection of references and published works related to PANDAS. This is a great source for recent research and work related to PANDAS/PANS.

An overnight transition from a typical child to high emotional temperament changes can be overwhelming and scary! The NIHM website has information that answers the question 'What is PANDAS?".

This site has local support groups available and can direct you to local practitioners.

Find hands-on and creative ways to address attention and executive functioning skills.

Try these sensory-based tricks and tips to help with meltdowns.

Books on PANDAS and PANS for kids, parents, teachers, and therapists

Books about PANDAS and PANS:

These books may help kids with PANDAS or PANS to better understand the disorder and symptoms. Children with siblings or friends who are experiencing symptoms of PANDAS or PANS would benefit from information relayed in easy-to-understand children's books with pictures. Also included in this list of books about PANDAS are books that can be referred to parents and teachers of children who are experiencing PANDAS or PANS.

Affiliate links are included in this post.

In a Pickle Over PANDAS is a book for kids with PANDAS or PANS

In a Pickle Over PANDAS is a children's book about a young boy who wakes up one morning with new and strange things happening in his body. They symptoms of PANDAS are described in a way that kids will understand and relate to. This book is a great resource for kids who are struggling to understand what PANDAS is and that they are not alone.

Saving Sammy is a book written by a mother of a boy with a sudden onset of PANDAS and describes her fight against the medical establishment to prove the link between infection-triggered PANDAS and her son’s sudden-onset OCD and Tourette syndrome.

PANDAS and PANS in School Settings is a handbook for teachers, administrators, school professionals, school based Occupational Therapists, and anyone who works with a child who is struggling with PANDAS or PANS. This handbook can help identify challenges and offers strategies to incorporate into the learning environment.

Childhood Interrupted: The Complete Guide to PANDAS and PANS is a guide for parents of children who are experiencing PANDAS/PANS and are seeking information related to behaviors, treatment interventions, therapy, support, and interventions.

A Child's Introduction to Understanding PANDAS is a book that parents can work through with their kids as they struggle to explain what exactly PANDAS is and how it's affecting the child. This workbook is a resource for identifying a individualized strategy plan using the book's journal sheets and strategy plans.

How to take the Grrr out of Anger is a book that can address one of the common symptoms of PANDAS and PANS. For kids that are experiencing behavior and emotional challenges as a result of PANDAS/PANS, the new feeling changes can be confusing and overwhelming. This book is a guide to helping kids understand anger-management tips strategies that can be used in healthy ways. This book can help kids understand and deal with the anger and emotions they feel.

What to Do When Your Brain Gets Stuck is a book that addresses the obsessive compulsive tendencies that are common with PANDAS and PANS. This book helps kids understand the obsessions or compulsions they may feel and act on and guides kids and parents through strategies that can help. The book has a lot of activities, tools, and guided instructions that can help kids take control of their OCD actions or thoughts.

Books on PANDAS for parents, teachers, kids, and therapists impacted by Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus

Information on PANDAS for parents, teachers, kids, and therapists impacted by Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus

References:

Janice Trigilio Tona, Sutanuka Bhattacharjya, Denise Calaprice; Impact of PANS and PANDAS Exacerbations on Occupational Performance: A Mixed-Methods Study. Am J Occup Ther 2017;71(3):7103220020P1-7103220020P9. doi: 10.5014/ajot.2017.022285.

Tona, J., & Posner, T. (2011, November). Pediatric Autoimmune Neuropsychiatric Disorders: A New Frontier for Occupational Therapy Intervention. OT Practice, 14-19.

PANDAS—Questions and Answers. (2016, Sept) Retrieved from: https://www.nimh.nih.gov/health/publications/pandas/index.shtml

When a child sits down to write at a desk, it can be easy for everything to go awry and messy, illegible handwriting to result. It might be poor carryover of handwriting skills, difficulty with letter formation, visual motor skills that are not up to par, or weak fine motor skills and pencil grasp struggles. The issue with sloppy handwriting is that there is a LOT going on! One tip to check as soon as a child sits down to write, is their posture. Everything from head positioning and visual view of the writing space to positioning of the arm and hand on the paper stems from the midline and base of support. Because of this, I wanted to share ways that core strength impacts handwriting.

Core strength impacts handwriting legibility and neatness when it comes to attention, posture, and every aspect of handwriting, a great resource for teachers or school based OT in the classroom who work on handwriting with kids.

Core Strength and Handwriting

The child with weak core strength may have sloppy handwriting that just can't be fixed. Band-aides of pencil grips, specialty lined paper, and handwriting modifications can help improve written work, but when a weak core is holding up the child, the handwriting struggles will never be fully fixed.

It is so important to start with the midline and base of support when it comes to handwriting. That proximal beginning of assessing the child can make a world of difference with just a few adjustments in posture and strengthening.

When there are handwriting problems, there are underlying issues that cause them. Core strength is a big cause of handwriting struggles.

Here are 6 ways that core strength impacts handwriting legibility and neatness:

1) When a child has a weak core, they may tend to sit with a modified base of support. They might slump over at their desk and lean on their elbows. You might see a slouched back, knees and legs sticking out between the rows of desks. You might see kids who are slumped over their papers or are leaning on one hand as they write. You might see the child lying forward on an extended arm that reaches over the front of their desk. An inefficient posture can lead to poor handwriting. Read more about a 90/90/90 posture and how to promote that posture using cue cards.

2) Classroom teachers will say they often times see students who are not active and alert during school tasks. A weak core can transition to inattention and inability to focus on learning or handwriting tasks. A core strengthening plan can help this problem.

3) When the core is not engaged, the child's non-dominant hand can not support the paper. When this happens, the paper isn't stabilized and legibility can suffer. Coordinating both hands together with an engaged midsection requires a strong core. Read here about tricks for holding the paper when writing.

4) A weak core can lead to a child who can't engage their muscles over a period of time. This looks like a child who wiggles, moves in their seats, jumps up, and slouches. With all of that wiggling and moving, handwriting can suffer!

5) Copying a list of words from a smartboard, book, or homework assignment center across the classroom or desk requires visual shift and the ability to quickly scan using visual perceptual skills. When a child who has weak core tries to copy a list or sentences, they might present with a slouched upper back and neck over their desk. Looking up and back down again can be really difficult for these students with the repeated flexion and extension of the neck. This can result in skipped words, letters, and phrases as well as poor margin use, line awareness, and spatial awareness when writing and copying written work.

6) A weak core leads to weak fine motor skills distally. The engaged and strong muscles of the abdomen and upper body allow for strength and engagement of the upper arm, and in turn leads to dexterity and motor control of the hands. When the core is weak the hands can not effectively do their job to hold the pencil and manage tasks such as in-hand manipulation.

What should you do when weak core muscles impact handwriting?

Strengthening the core can have a HUGE impact in handwriting!

Use the strategies and tips in The Core Strengthening Handbook is a resource for fun and creative core strengthening activities for kids with awesome exercises, games, and activities designed to give kids the strong core foundation they need to improve handwriting.

The Core Strengthening Exercise Program to help make core strengthening fun and entertaining for kids while promoting carryover in the classroom and when writing.

The Core Strengthening Handbook has everything you need to know outlined into informative strategies and tips that work to meet the needs of kids of all kinds!

Get your copy of The Core Strengthening Handbook HERE.

As kids, we used to hop from couch to couch and make a flying leap across the living room to the corner chair. We would hop from one surface to another with one thing on our minds...

The living room floor had turned into boiling hot lava!

When my kids started hopping around from pillow to pillow and landing with a roll onto the couch with claims of the floor turning to lava, I had to smile.

The Floor is Lava is Back!

What is so cool about the floor being lava (besides the nostalgic sentiments from parents?) A great game of The Floor is Lava has some major motor movements and sensory play components!

From jumping, leaping, hopping, rolling, and crashing, The Floor is Lava is a fun and creative way to encourage movement and sensory motor play, both indoors and out!

The Floor is Lava Games

Here are some fun ways to use The Floor is Lava Games to promote sensory input and motor movements:

Place pillows and couch cushions on the floor. Kids can hop from pillow to pillow on one foot or two. Move the pillows further and further apart to promote movement coordination and motor planning. Don't touch the carpet, it's lava!

Place paper plates in a line on the floor. Use them as a balance beam to address vestibular sensory input. Hop from plate to plate without touching the ground, it's burning up!

Play a stop and go game that promotes auditory processing skills like auditory figure-ground discrimination. Call out, "The floor is lava!" and everyone has to hop off the ground onto something besides the hot, hot ground!

Use boxes like milk crates, stools, or dining room chairs to add height components to The Floor is Lava game.

Add a learning component by asking kids questions when they land on a safe space. Think about incorporating spelling words, math facts, or memorization facts.

Play The Floor is Lava at the playground to add vestibular sensory components to the game. Don't touch the ground, it's hot! Read more about the sensory benefits of the playground.

Make a Safe Island when playing a lava game. Use a hula hoop and all kids can hop in the hoop to stay safe from that burning hot lava. Don't hop out of the other side of the hoop to stay safe and to work on motor control.

Develop Skills While Playing The Floor is Lava

When playing these lava games, kids are developing and building so many skills!

Gross motor coordination
Core strength
Eye-body coordination
Visual motor skills
Motor planning
Balance
Attention
Vestibular sensory tolerance
Proprioceptive sensory tolerance
Impulse control

Do your kids play The Floor is Lava? Did you play as a child? Introduce your kids to some of these versions of the lava game and boost movement and development skills at the same time!

What does a meltdown look like?

Meltdowns look like different things to different kids:

Meltdown Tricks and Tips

Proprioceptive Input to help with meltdowns

Sensory-based movement to help with meltdowns

Calming Tactile Sensory Input to help with meltdowns

Calming foods to help with meltdowns

Characteristics of Auditory Learners

Activities for Auditory Learners