Have you ever wanted to try out a whole selection of adapted trikes? Try a new swimming experience? Enroll in a summer camp?
Participation is defined as anything that involves friends, family, future, fitness, fun, or function. There are many local activities that promote play, new friends, and new interests for children and young adults with disabilities. However, these opportunities are not always easy to find. Most suggestions on this list are based in Sonoma County, California. Some are further away, but could be a fun destination or a special side trip if you are in the mood for adventure! Additional suggestions are welcome.
Continue reading “Recreation for Children With Disabilities in Sonoma County”
Irén is a four-year-old girl with dystonic quadriplegic cerebral palsy, GMFCS level V. She is non-verbal and generally a content little girl. Over the last week she has been holding her muscles tensely, she has a distressed expression for most of the day, and has developed a behavior of constant grunting and gasping. Her parents come to PT to seek your opinion. Is she in pain?
Take a moment to scan of your caseload and note the kids you think may be in pain.
How do you know?
Do you have any measurement tools?
Children with CP frequently experience pain:
- Pain in childhood disability is typically under-identified, measured, and treated by clinicians.
- Pain in childhood disability is complex. It impacts everyday function and quality of life. As pain increases, quality of life dramatically decreases. Parental stress levels increase.
- Pain partially accounts for the association between cerebral palsy and depression. (Whitney, 2018)
- There remains a gap in knowledge between accurate pain assessments and effective treatments.
Continue reading “What do we Know About Pain in Cerebral Palsy?”
Gianna is a 4-year old girl with bilateral cerebral palsy, GMFMCS level IV. She has mixed tone with components of both spasticity and dystonia. Over the last month she has been acting differently, with loud vocalizations, irritability, agitation, increased muscle tone, sleeplessness, and episodes of teeth grinding. Everyone in her family has been feeling heightened stress. Is Gianna in pain? She can’t clearly relay what she is feeling and where it hurts because she is non-verbal. There is no obvious swelling or redness on any area of her body. As her PT, how can you tell if she is experiencing pain?
Gianna’s situation is common. The SPARCLE study in Europe identified that children with CP experience more pain than their peers and that pain can lead to a lower quality of life, decreased participation, and family stress. Pain has been found to decrease quality of life more than the physical disability itself. As a health practitioner, it can be difficult to determine the presence of pain unless there is a visible sign, localized pain, or the child can verbalize what they are feeling. Continue reading “Case Study- Pain”
Yasmin is a sixteen-year-old girl with athetoid cerebral palsy, GMFCS level IV. She is passionate about her studies and has already gone to check out a few colleges. She is thinking about living in a dorm. As her PT, are there measures that will help you learn about her current level of participation? You know about her activity capacity, but not as much about her current level of performance – and that is what will matter as she transitions to more independent living. After some thought, you decide to update the TRANSITION-Q for health management skills and the ACTIVLIM-CP for daily activities. Additionally, you are going to update Yasmin’s COPM to prioritize her individual goals.
I’ve recently discovered the world of performance and participation measures. They can begin to bridge the gap between physical therapy appointments and higher participation in daily life. Some measures are free and translated into many languages. Other measures assess global performance change after PT intensives, Botox, or surgery. Many of these are new to me, aside from the CHAQ, PEM-CY, COPM, and GAS. It is exciting to think of the potential and I look forward to trying them out in the months to come! Continue reading “Tests & Measures for Participation”
Luca is a 7-year-old boy with Duchenne Muscular Dystrophy. As his physical therapist, you are wondering about tests and measures that fit into the activity section of the ICF. Thinking of how to quantify his activity, you decide to use the North Star Ambulatory Assessment (NSAA) to measure transitions and mobility, the Timed Floor to Stand-Natural (TFTS-N) to time his rise from the floor, and the Six Minute Walk Test (6MWT) to measure distance walking.
Continue reading “Tests, Measures, & Classification Systems for Activity”
JoLee is a four-year-old girl with mixed spastic/dystonic cerebral palsy, GMFCS III. Her physical therapy progress report is due and you would like to use objective tests and measures that are appropriate for her age. After looking through this list, you decide on the ECAB for balance, the SATCo for trunk control, and the HAT for hypertonia/dystonia. Of course you will also do traditional range of motion testing and an Adam’s forward bend test. What’s unfamiliar on the list? The MPST for anaerobic performance looks interesting, but it isn’t valid for JoLee’s age.
Continue reading “Tests & Measures of Body Structures and Body Functions”
Devin likes to go fishing; it’s his favorite hobby. He is a five-year old boy with a diagnosis of bilateral cerebral palsy, GMFCS level 1. Devin perches at the river’s edge in a deep squat in order to catch a glimpse of the trout beneath him.
Deep squatting is useful for a variety of reasons, like getting close to the floor to see something clearly, or to rest without getting on knees or bottom. It requires adequate hip flexion range, ankle range, and postural control. It is a developmental milestone.
When I look at the drawing of Devin, I wonder why:
- Devin has an inverted foot position on right.
- His low back position shows excessive lumbar flexion during a deep squat.
- His pelvis is posteriorly tilted.
- He is stabilizing, or limiting his degrees of freedom, by bracing his right elbow on his right knee and resting his chin firmly on his left knee.
Continue reading “Case Study- Supporting one Boy’s Love for Fishing”
Emil is a seven-year-old boy with cerebral palsy and medical complexity. He has lived in a rural region overseas until coming to see you for a physical therapy evaluation. Thinking of Emil functioning, in the context of his life, what areas should you focus on? When thinking about the whole child, physical therapy decision-making can become a bit overwhelming. Is there a list that can help you concentrate on the most relevant areas of body structures/function, activity, and participation for a seven-year-old boy with CP?
I am reading an interesting book that discusses the power of checklists. It’s called the Checklist Manifesto: How to Get Things Right and it is written by Atul Gawande. In this he discusses how checklists are most effectively used to assist people as they deal with complex situations. After reading this, I began to view the ICF core-sets as essential checklists to reduce error and foster team communication. Continue reading “Using Core Sets With the International Classification of Functioning-Children & Youth (ICF-CY)”
“My daughter, Malia, is 5 days old. Is it too early to start tummy time with her? She doesn’t seem to like it.”
The American Academy of Pediatrics recommends putting babies on their backs to sleep and their tummies to play. However, it’s not always the easiest thing to put your newborn in the prone (or tummy time) position in the first few days and weeks. It seems they either sleep or fuss when placed in that position! The hips are high in the air, elbows are off the ground and the weight is on the face. It does not look so comfortable and it can be a bit of a tricky start! Continue reading “Newborn: Beginning Tummy Time”
Michaela is a five-year-old girl who loves ballet. She has a diagnosis of diplegic cerebral palsy, GMFCS level III. What does this mean?
GMFCS Level III (Between 4th & 6th Birthday)
Children walk using a hand-held mobility device in most indoor settings. They may climb stairs holding onto a railing with supervision or assistance. Children use wheeled mobility when traveling long distances and may self-propel for shorter distances.
From the GMFCS E&R instruction guide
GMFCS-E&R Quick facts:
- Five-level classification system
- Based on the child’s self-initiated, regular movement
- For use with children with cerebral palsy only
- Used to classify children with CP from 1-18 years
- Not for use to classify infants under 1 year of age
- Not for use as an outcome measure
The Gross Motor Function Classification System (GMFCS) levels I-V are gross motor function categories for children with cerebral palsy. This post describes what GMFCS levels I through V mean, how they are used, and some of the controversy around them. Continue reading “Using the Gross Motor Function Classification System- Expanded & Revised Version (GMFCS-E&R)”
“Nate, stand up”. Nathan is five, has cerebral palsy and takes a while to prepare to move his body. Thirty seconds or more can pass between the request to move and getting a response. He is quiet, then there may be a quiver of movement. Sure enough, after some patience, up comes the leg and he rises to standing with only a little assistance. In the context of the classroom, this extra waiting time is surely difficult. Nathan either arrives late to an activity or his aide is lifting and initiating for him throughout the day and a behavioral expectation is set up.
Children with motor planning difficulty need extra time to initiate and carry out their movement. Many of us live in a world where time is scarce and we don’t feel that we have time to wait. On the other hand, starting with the end in mind is crucial and takes a lot of training, repetition and patience. What have you decided to do when faced with this dilemma?
Continue reading “Are You Helping a Child Move Before They are Ready? Thinking About Latency in the Context of Movement.”