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.

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.

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!

For kids who struggle with executive functioning skills, there are parts of the day that require more intentional focus in order to successfully progress through the day. Identifying high-stress or high-processing times during the day can help parents, teachers, and therapists come up with a plan of action for executive functioning skills and kids' daily activities.

There are many executive functioning skills that kids process through during daily activities at home, school, and in the community.

Executive Functioning Skills and Kids Daily Activities

These are times of the day that involve multiple executive functions or periods of transition:

Morning routines

Mealtimes

Transitions to the car or school bus

Start of the school Day

After school at home

Homework

Evening routine

After school activities

Bedtime routines

Social experiences (parties, play groups, group activities)

Community interactions (library, shopping, meals out in a restaurant)

Church

During these periods of the day, it can become overwhelming for the child who struggles with executive function skills, particularly if the child is also challenged with sensory processing difficulties, attention or hyperactivity, or communication challenges.

So why are these transition periods a high target period for inefficient use of executive functions? There are a few theories to consider:

1.) Executive functioning depends on the frontal lobes of the brain. These high-stress times of the day may be impacted by a busy environment, multiple tasks that need to be completed, and other frontal lobe tasks such as judgment, abstract reasoning, planning, and other thinking functions, management of body movement (motor function), emotions, attention, or motivation.

2.) Each of these high-executive function periods of the day require multiple actions of the body and brain. There are many tasks that make up the period of before-school routines, for example. Each of those tasks can throw a child off task and interfere with getting out the door on time, with a jacket, lunchbox, homework, school supplies, notes for the teacher, snack, and whatever else is needed for a typical school day. A lot of steps with a lot of opportunities for impulsive actions can derail progression of steps to get a job done.

Related read: Try these ideas to address impulse control.

3.) Within the main areas of executive functioning are many smaller scaled steps that go into every task and particularly tasks that include several steps and processing, prioritization of steps:

a. Forming ideas to do an action.

b. Starting an action.

c. Maintaining an action until the step is finished (knowing when a step is done).

d. Switching behaviors to do the next step needed.

e. Regulating, controlling, and adjusting body actions to deal with changes and new information along the way.

f. Planning a tactic down the road to deal with a new issue or new direction.

g. Holding details in the working memory.

h. Controlling emotions.

i. Thinking abstractly.

j. Knowing when the whole task is finished, stopping that task, and moving onto a different task or activity.

4.) It's possible that time of day can have an impact on an individual's ability to process tasks. Difficult tasks might be easier for some to accomplish earlier in the day when we are at optimal attention and focus and not fatigued.

When executive function skills interfere with so many parts of the day, it can be overwhelming for a child! As a result, behaviors, or meltdowns can result.

So what to do about about struggling initiation, task completion, working memory during these high stress-low executive functioning skill times of the day?

Fall back on proven executive functioning skill strategies that help. Each child will be different in what works for them, so identifying tools that work are key.

Here are a few additional strategies to help with executive function skills.

References:

Bennett, C. L. (2008). Individual differences in the influence of time of day on executive functions. 121(3):349-61. https://www.ncbi.nlm.nih.gov/pubmed/18792714

Doty, L. (2012). Executive Function & Memory/Cognition Changes. Retrieved from http://alzonline.phhp.ufl.edu/en/reading/executivefxlatest.pdf.

When kids struggle with weak fine motor skills, they can have difficulty in so many areas! This post includes ideas for using clothespins and busy bags to improve fine motor strength.

Developing hand strength is an important skill for kids who struggle with manipulation of small items like buttons or zippers. A child who struggles with handwriting can many times present with weak hand strength. Trouble maintaining a pencil grasp, very light handwriting, switching hands when coloring or writing, using the whole arm to write, a closed thumb web space, and a distorted grip on the pencil are signs of weakness in the hands.

But the trouble with working on improving hand strength is that many times, kids just don't want to correct their pencil grasp or work on tasks that are hard to do like practicing zippers over and over again.

Use busy bags to help kids develop and build fine motor skills like hand strength

One simple strategy to fix these strength issues is making the work fun. Here are creative ways to use clothespins to improve fine motor hand strength.

Putting the activities together in a busy bag form can be helpful for therapists who need to quickly pull a strengthening activity from their therapy bag. The fine motor busy bags below can be passed on to teachers to encourage development of fine motor strength in the classroom and at home.

These fine motor strengthening activities are busy bag ideas that can be used in therapy home programs or as part of fine motor activities that the whole class can benefit from!

Clothespin Busy Bags Fine Motor Strength Activities

We talked before about the fine motor strength benefits of clothes pins. There are SO many ways to develop the specific grips needed for functional tasks using clothes pins. Work on lateral pinch, tip to tip pinch, three jaw chuck using clothes pins. Read more about the different pinch grips and how clothes pins help with strengthening by clicking the link above or this image:

Fine motor pinch grips and exercises to work on them using clothes pins, from an Occupational Therapist.

These fine motor strength activities use clothes pins. Clothes pins are something that you can grab at the dollar store and easily adapt to activities of all sorts. Make a busy bag that builds on learning concepts like math, literacy, colors, or patterns with activities that can be done over and over again in a busy bag! Try these clothespin busy bag activities to strengthen the hands:

This Math Clothes Pin Activity by Beauty in the Mess works on math skills while strengthening the hand muscles.

Match colored clothes pins with this Color Matching Activity by Mom Trusted.

Talk about weather using this weather themed clothespin activity that strengthens writing skills AND hand strength!

Use clothes pins to count robots while strengthening those hands in this busy bag activity by I Can Teach My Child.

Attach spiny plates to a stegosaurus using clothespins in this Clothespin Stegosaurus by No Time for Flashcards.

Match colors on a printable color wheel while strengthening the hand muscles with this printable color wheel by Frau Liebe.

Work on place value with a 1-100 math activity that uses the muscles of the hands in a superhero hand strengthening activity.

Match colored clothes pins to colored Mega Blocks in this color matching activity by LalyMom.

Match colors with a neat pincer grasp using very small clothes pins in this super fine motor busy bag from Powerful Mothering.

Address letter recognition while building fine motor strength in a busy bag using letters like Learn Play Imagine.

Making busy bags that work on specific skills WHILE addressing educational concepts such as math or reading are a powerhouse tool for therapists and teachers! Make the busy bag ideas above and pass them on to teachers or parents who want to build hand strength. Busy bag ideas like this are perfect for centers or home programs.

Occupational Therapists are always looking for activities that build specific skills and can be easily incorporated into the classroom. Fine motor busy bags like these can be a powerful tool for the school based OT!

Looking for more ways to create fine motor busy bags for parents, teachers, or classrooms? The Busy Bag Book is a new book written by my friend Megan at Coffee Cups and Crayons. The e-book is PACKED with activities that develop specific skills in a fun way. The bonus for busy bags are that they can be packaged up and used time and time again in centers or while on-the-go.

As a reader of The OT Toolbox, you get to use a special discount code so you can grab The Busy Bag Book and get tons of ideas for building hand strength with busy bags. Use the discount code OTFRIENDS.

This code expires in thirty days, so be sure to use the code while you can! It's the perfect time of year to create your busy bags for back to school! (Affiliate links are included in this post.)

http://www.coffeecupsandcrayons.com/product/the-busy-bag-book/ref/4/

Click HERE to learn more about The Busy Bag Book and to get started on creating your own busy bags that will help the kids develop fine motor skills at home and in the classroom.

The Busy Bag Book is your resource for busy bag book creation!

Use clothes pins to help kids build and develop fine motor skills like hand strength.