Tag Archives: proprioception

Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome?

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My posts on proprioception and hypermobility have been popular lately, leading me to think that parents (and therapists) want more information on the sensory basis for their children’s struggles, and that often their treatments don’t include addressing their sensory processing issues. The Ehles-Danlos Syndromes (yes, there are more variants than just vascular and hypermobile!) are somewhat rare connective tissue disorders that can create generalized joint hypermobility.   Kids with EDS are often diagnosed as having a coordination disorder before they get the EDS diagnosis, and their families describe them as “clumsy” or even “lazy”.  I see them as having sensory processing issues as well as neuromuscular and orthopedic issues.   Take a look at Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior and Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for more on this subject.  If you are an OT or a PT and you are thinking of using K-tape, read my post Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders? before you begin.  You may change your approach and expand your thinking about taping after you read it!

There are some caveats in using techniques from sensory integration protocols with this population.  This doesn’t mean “no”; it means think about it first.  The use of the Wilbarger Protocol is one that requires some thought before initiating with EDS kids.

The Wilbarger Protocol:

For those of you who are unfamiliar with the Wilbarger Protocol, it is a common treatment approach for children with sensory sensitivity, sensory discrimination issues and poor sensory modulation.  Created by Patricia Wilbarger, a terrifically talented OTR  who directly trained me as a young therapist, it is a neurologically-informed treatment that can be used quickly for both immediate improvement in sensory processing and it can make long-term alterations in the brain’s ability to use sensory input for movement and state control.  The Wilbarger Protocol involves skin brushing and joint compression in a carefully administered method that uses the “gate theory” of sensory processing to assist the nervous system in regulating awareness and arousal.

There have been other protocols for regulation developed over the years, and adaptations to the Wilbarger Protocol have occurred since it’s creation.  But daily and repeated use of brushing the skin and use of joint compression to deliver deep pressure input (to inhibit light touch registration and enhance proprioceptive discrimination) are the cornerstones of treatment delivery.

Adapting the Protocol for Ehlers-Danlos Syndrome

Understanding the systemic nature of EDS is important.  Often therapists are unaware of the precautions since the child doesn’t have a formal diagnosis Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue?.  Since the Wilbarger Protocol was not created to treat EDS, I am recommending that therapists and parents consider adapting it to protect the joints and skin of children with EDS while still gaining benefit from this technique:

  • Reconsider using the brush.  Although the dual-treatment of brushing and joint compression makes this technique a powerful approach, kids with EDS often have skin that is more fragile than average.  It can bruise and tear more easily, especially with the vascular or classic EDS subtypes.  Small children will be brushed repeatedly over the same skin area, increasing the risk of shear, abrasion and bruising.  Children (and adults) with EDS will have skin reactions far in excess of the amount of pressure applied.  This is related to the assumption that the connective tissue that makes up skin and blood vessels is either weaker or thinner than typical children.  My advice: go with the joint compression component alone, and see if you get a clinically valid result without the risk of skin damage.
  • Make sure that you are well-trained in the positioning and administration of joint compression.  I have taken joint mobilization training courses, as well as having dual licenses in massage therapy and occupational therapy.  Being able to feel correct joint position and alignment is absolutely key when children have loose joints, so use this technique with care.  Avoid painful joints and limit repetition to the shortest amount needed to see a clinically meaningful response.
  •  Train parents extremely well before recommending home use.  Most parents can learn this technique with the right explanation and some practice.   If a parent seems unable to perform joint compression correctly, reconsider the use of a home program.  This has only happened once in my career.  A mom was truly unable to perceive the amount of force she was using.  She admitted that this had been an issue for her since childhood, and I suspected that she had her own sensory processing issues.  We moved on to other treatment choices.  There is never a reason to stick with a treatment that causes a risk to a child or makes a parent feel like they are a failure.  Ever.

The true skill of a therapist is the ability to offer the just-right challenge to each child, based on a therapist’s observations, assessment and knowledge base.  I believe that there are many kids with EDS that could benefit from the Wilbarger Protocol when it is effectively adapted to their needs.

Looking for more than blog posts?  Visit my website tranquil babies and purchase a phone/video session to discuss your concerns and learn about what occupational therapy has to offer your child!  Are you a new therapist, or new to pediatrics?  Let me help you build your skill set and amaze your clients with a mentoring session.

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Is Low Muscle Tone A Sensory Processing Issue?

Only if you think that sensing your body’s position and being able to perceive the degree/quality of your movement is sensory-based.  I’m being silly; of course low tone creates sensory processing issues.

It isn’t the same sensory profile as the child who can’t pay attention when long sleeves brush his skin, nor the child who cannot tolerate the bright lights and noise at his brother’s basketball games.  Having difficulty perceiving your foot position on a step, or not knowing how much force you are using on a pencil can make life a challenge.  Sensory processing issues mean that the brain isn’t interpreting the sensory information it receives, or that the information it receives is inadequate.

That is the situation with low muscle tone.  Low tone reduces the amount of joint and muscle receptor firing because these receptors need either pressure or stretch to activate.  If it is not in a sufficient quantity, the receptors will not fire in time or in large enough numbers to alert the brain that a change has occurred. Therefore, the brain cannot create an appropriate response to the situation.   What does this look like?  Your child slowly sliding off the side of a chair but not noticing it, or your child grinding her crayon into the paper until it rips, then crying because she has ruined another Rapunzel picture.

Muscle tone is a tricky thing to change, since it is mediated by the lower parts of the brain.  That means it is not under conscious control.  You cannot meditate your way to normal tone, and you can’t strengthen your way there either.  Strength and tone are entirely different.  Getting and keeping strength around joints is a very important goal for anyone with low tone, and protecting ligaments from injury is too.  Stronger muscles will provide more active contraction and therefore pressure, but when at rest, they are not going to respond any differently.

Therapists have some strategies to improve tone for functional activities, but they have not been proven to alter the essential cause of low muscle tone.  Even vestibular activities, the big guns of the sensory gym, can only alter the level of tone for a short period during and after their use.   The concept of a sensory diet is an appropriate image, as it feeds the brain with some of the information that doesn’t get transmitted from joints and muscles.    Sensory diets require some effort and thought, just like food diets.  Just bouncing on a therapy ball and jumping up and down probably will not do very much for any specific child.  Think of a sensory diet like a diabetic diet. It doesn’t make the pancreas start producing insulin, but it helps the system regulate blood glucose more effectively.

Managing low muscle tone for better movement, safety and function is complicated.  Step one is to understand that it is more than a child’s rounded back when sitting, or a preschooler that chews his shirtsleeve.  Step two is to make a multifocal plan to improve daily life.

For more information on life hacks for toilet training, dressing and play with children that have low muscle tone, please look in the archives section of my blog for targeted ideas! My post and are new posts that go into more details regarding life with kids that have sensory processing issues.

For personalized recommendations on equipment and methods to improve a child’s functional skills, visit my website and buy a 30-minute consult.  We can chat, do FaceTime, and you get the personal connection you need to make your decisions for your family!

 

 

Why Low Muscle Tone Creates More Toilet Training Struggles for Toddlers (and Parents!)

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Most parents assume that toilet training isn’t going to be easy. A child with low muscle tone often crawls later, walks later, and may speak later.  But  low tone can affect toilet training in ways both obvious and subtle.  As an occupational therapist, I want to share an explanation of why one of the consequences of low muscle tone can make teaching this skill just as hard as teaching your child to walk independently.  Hint:  it isn’t something you can see, and it isn’t balance or stability. (both important but quite visible consequences of low tone)

When muscles are not “sitting at the ready” for use as they are in normal tone, it takes more time, more stimulation, more effort or all three to get them to contract and tighten.  But it also means that the receptors inside the muscles of the bladder, the rectum, and the abdomen are not firing as frequently or as strongly.  The brain’s interpretation of a change from resting state to the stimulation of stretched receptors is known as proprioception.  The special ed teachers I work with in Early intervention would call it “body awareness”.  This internal awareness of a change in pressure within your bladder wall, in your rectum and against your pelvic wall is what compels you and I to get up and go to the bathroom.  This is “interoception“, proprioception’s internal version.  With low muscle tone, your toddler is honestly stating the truth when they tell you that they don’t feel like they have to “go” and then they pee on the floor right in front of you.  They may have only a very weak sensation of fullness, or it may only be perceived a few moments before they really have to go.  That is what lower proprioceptive registration is like.  All of a sudden, the level of muscle receptor firing has reached a point where it is perceived.  And now there is a puddle on your floor.

What can you do?  Well, in previous posts I have mentioned that all the strategies to develop cooperation and frustration tolerance are keys to teaching a toddler anything at all. I go into more details about readiness in Low Tone and Toilet Training: The 4 Types of Toileting Readiness .  When you are facing an issue where the feelings that you are trying to sensitize them to are fleeting and invisible, you are going to need them to be very highly motivated indeed.  That means that you work on Happiest Toddler on the Block techniques such as patience stretching and “feeding the meter”.  These create positive parenting interactions that help your toddler listen to you when you tell them it is potty time and then keep them on the toilet long enough to make things happen.  If your toddler ignores your directions unless it is something he wants to do, and engages you in defiance games constantly just to see your reaction, you have some work to do regarding his behavior before toilet training is going to be successful.

Here are specific suggestions for toilet training the child with low muscle tone:

  • They need stronger physical sensations at the time when you sit them down on the potty. A full bladder stretches, and that stretch of the muscle wall is what they don’t feel unless it is a profound stretch. That means that they should drink a larger amount of liquid at specific times, so that bladder is really full at a predictable time. Yes, it means that roaming the house with a sippy cup will not work for toilet training.  A half-full bladder isn’t going to give enough sensory input but it will empty when they bend forward or squat.   If you have done the patience stretching and feeding the meter techniques from Happiest Toddler on the Block, your toddler can handle the change in beverage scheduling and they will be fully hydrated at all times.  They are just not drinking all day long.  The same thing can be done with meals, allowing for small snacks but having real toddler-sized meals, not grazing throughout the day.  Full colon= more contractions and more sensations.  A diet with fiber makes the poop firmer, and therefore sensations in the colon are more obvious.  A higher-fiber diet is a good way to prevent constipation as well.   This is a summary of a recent comment from a parent that used these methods:  She told me that using this strategy made her life so much less stressful when taking her daughter out of the house for preschool or appointments.  She knew that her child had fully emptied her bladder and wouldn’t be taking a big drink again until lunch.  She didn’t have to scout out bathrooms constantly and keep watching her daughter for little signs that she needed to “go”.  Makes sense to me!
  • Watch your child and see what their current voiding/defecating schedule seems to be.  Not every person is like clockwork, but you need to know when they are likely to go once you have the drinking and eating schedule down.  What goes in will come out.  Kidneys are more reliable than intestines.  About 30-45 minutes after a big drink, that bladder should be filling up.  For some children it can be 20-25 minutes. Then you know when to get them on the potty.  There is no point in sitting there when they are close to empty.  Everyone gets irritated.  Is your child unwilling to drink enough?  You may need to offer a better beverage, such as a yogurt drink or chocolate milk.  Serve them with a “silly straw” and watch that drink disappear!
  • These children just don’t have that much abdominal muscle tension to help with voiding, so the physical position they are in can help or hurt their efforts.  Sitting with your knees lower than your hips and your body leaning back reduces the intra-abdominal pressure.  You want to increase their ability to push gently, so sitting on a floor potty in a slightly flexed position can help them contract their abdominal muscles and push with their feet to get some pressure going.  Heavy straining is not recommended and so do not demonstrate or encourage superhero-sized force. Read my post on selecting potty seats that help your child do the deal. Picking A Potty Seat For Toilet Training A Child With Low Tone
  • Don’t distract them from the job at hand.  You might not be comfortable with a long conversation about toilet activities, but if they are chatting about Thomas the Tank Engine while that pee is coming out, they have no idea how it happened or what it felt like just before the stream started.  They missed out on becoming more aware of the sensory experience, and low muscle tone can make that sensation very fleeting and vague for them to begin with.  If they arrived on the potty full and ready to do their thing, this doesn’t have to be an extended bathroom visit.  This bathroom trip is all about the process of using the toilet, not a rehash of what they did at school that day.
  • Last, and probably obvious to most parents, is that you cannot shame a child for not recognizing a sensation that is not easily perceived because of low muscle tone.  They didn’t cause this issue, and once they are motivated to use the toilet, they would like to please you and feel proud of themselves too.

For more information about managing toilet training with low tone, take a look at Low Tone and Toilet Training: How Can Your Child’s Therapists Help You ?,  Is Your Constipated Toddler Also Having Bladder Accidents? Here Are Three Possible Reasons Why  and Should You Install a Child-Sized Potty for Your Special Needs Child?

If your child has mastered the potty seat but isn’t ready for the “big time”, read Low Tone and Toilet Training: Using The Adult Toilet for two pieces of equipment that can raise their game, and a few other strategies to help them make the switch to using an adult toilet.

I am so excited to offer parents a comprehensive manual that prepares them well and explains so many of the confusing situations that they encounter.  Don’t be afraid to train….be prepared!  Learn more how my e-book can help you make changes in your child’s skills today by reading The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Help Has Arrived!

Here’s what parents are saying about The Practical Guide”:

The Practical Guide has truly been heaven sent!  Although my globally delayed 5-year old daughter understood the idea of toileting, this skill was certainly not mastered.  Our consultations with Cathy and her guide on how to toilet train have given me the knowledge I’ve needed to understand low tone as a symptom that can be tackled.  Morgan has made visible advances, and I am so encouraged and empowered because I know what piece we need to work on next.  Thank you, Cathy, for writing this book!”      Trish C, mother of Morgan, 5 years old

“I would often say to myself “Cathy has to put all of her accumulated wisdom down into a book”.  I am happy to say-here it is!  You will find no one with more creative and practical  solutions.  Her insights and ideas get the job done!”     Laura D. H., mother of M., 4 years old 

Cathy has been a “go-to’ in every area imaginable, from professional referrals to toilet training.  I can’t say enough positive things about her.  She has been so insightful and helpful on this journey.”  Colleen S. mother of two special needs children

How do you buy my book?  Three ways:  Visit my website tranquil babies, Buy it on Amazon.com, or visit your therapy source, a wonderful site for parents and therapists.

 

For even more support with your toddler, visit my website tranquil babies and speak with me directly by purchasing a phone/video consultation.  You will be able to ask your specific questions and get up-to-date equipment recommendations and more!

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