Episodi
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How to troubleshoot when something is wrong with a non verbal child.
Diagnosis and classifications that come with that.Recent height and weight - recent growth spurt, lack of growth, fast weight gain or weight loss can all be important indicators to share.Recent eating, drinking and sleeping habits.Have videos of your child on a good day to help show what you are explaining.Any videos you may have taken if it's been a longer decline such as a change in communication, mobility, tone or just generally in your child's personality.Any recent changes in medications.
It can be so distressing for everyone involved when something is wrong with your child and they can't tell you what, it's really hard to know where to start sometimes, when to take action and who can help.
A lot of families have to rely on intuition and sometimes this intuition won't always match a typical clinical presentation for that concern.
If your child is very distressed, crying differently and unable to settle it's important to seek medical attention quickly. It's important to know that your intuition in these situations is the evidence so don't be afraid to communicate what you are thinking and feeling could be going on.
If you have time, it is important to note some things down to share with the health professionals you are seeing. These include:
It is important, where possible, to start labeling things in play on dolls or when your child falls, has bumps or is feeling unwell and teach a communication style your child responds to that can help them when things are wrong to communicate to you.
It's important to know that therapists and health professionals want you to speak up when you think something may be wrong, no matter how small. They want your parental input, even in therapy sessions where you think the therapist may know your child well. It's important you stop a session if you think something is too much, not working or uncomfortable. I know I have been guilty of leaving it thinking the therapist knows best but Dayna makes it clear they are needing your input.
The important final takeout from today's podcast is to remember we do not want to push our children through therapy if they are crying. If a child is distressed and crying they are not taking in anything and there is no advantage to continuing. -
This has been a common question and topic not only within the neurodisability community but also the families and carers of neurotypical children.
What is too much screen time and when is screen time a bad thing?
The research covered in this article is available here: Mallawaarachchi S, Burley J, Mavilidi M, et al. Early Childhood Screen Use Contexts and Cognitive and Psychosocial Outcomes: A Systematic Review and Meta-analysis. JAMA Pediatr. Published online August 05, 2024. doi:10.1001/jamapediatrics.2024.2620 -
Episodi mancanti?
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GMFCS - When to expect a GMFCS score and can this change over time?
As parents and carers of children with neurodisabilities we can't help but hyperfocus on the few bits of information we can get when our children are young that give us insight into our children's future.
The Gross Motor Function Classification System (GMFCS) is one of those tools available that indicates how a person functions everyday and gives an idea of what equipment or mobility aids a child may need in the future such as crutches, a walker or a wheelchair to get around.
Due to comorbidities that can come with neurodisabilities, the GMFCS level may appear to fluctuate at times depending on how they are affected by things such as seizures, sensory preferences, respiratory issues and this can change the level of monitoring for things like hip surveillance in our case. Whilst our son’s GMFCS level changed in a report, within the context of hip surveillance, it just meant more monitoring and this was a good thing for us.
You should expect a GMFCS rating around 2 years of age and if the rating was to change it would be likely to happen before the age of 5. If you do not agree with the score allocated to your child, you can ask for a therapist to redo it and complete the questions with the clinician completing the assessment. -
This week we discuss all things self-regulation and behaviour management.
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Therabytes - Taking medication, when should I contact my medical team if things don't look right?
A conversation about observations, intuition and lines of communication between the child, the family and the medical team/s. -
Unlock the Power of Goal Setting!
TheraBytes is back with another stellar question and answer - this week we tackle the concept of SMART goals.
Why do you set goals? There is huge power in setting goals - it helps you and everyone in your world to prioritise what is important.
SMART goals:
🟠 Specific - be as specific as possible🟡 Measurable - make sure it's objectively measurable
🟢 Achievable - it needs to be realistic and achievable
🔵 Relevant - it always needs to be relevant and personal to the child
🟣 Time-Bound - it needs to be time sensitive and allocated to a time and date
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What to do if you feel like your child is not making the right amount of gains in their skills or you believe you are seeing some skills being lost.
It can be very complicated and knowing what to record, observe and report can be so valuable. -
All about using equipment to encourage movement!
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On this week's TheraBytes episode, we delve into the science of early walking, uncovering its benefits and significance.
It's all about mobility as a human right! -
All about trunk control and hypotonia!
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All about Dysphagia!
Dysphagia means that an individual may have impaired swallowing. It is an impairment that can be observed in people with cerebral palsy or neuromuscular diseases. It occurs when the individual isn't able to safely swallow due to changes in muscle tone or altered coordination. It is so important to identify dysphagia because it can have some serious consequences on lung health and nutrition.Identifying dysphagia is often within the realms of speech pathologists but it usually also involves large teams such as ENT, nutritionists and respiratory medicine. These teams will work together to make a plan to ensure that the individual receives nutrition and hydration safely. It may mean recommending particular textures of food or thickness of liquids so that it is easier for the individual to prepare the food to swallow safely. However, at times, this can be very challenging and meal times can become very lengthy and frustrating with children failing to put on enough weight. When this happens, it may be necessary to consider a PEG which provides a safe way for nutrition and hydration to enter the body without the concerns of choking or aspirating.
Aspirations are when food "goes down the wrong pipe" and ends up in the lungs causing infection. This can be very serious especially if it occurs frequently and this is why it is so important for dysphagia to be treated.
In this episode we also talk about some practical strategies and tips which include reducing distractions when eating and not walking or moving around when eating. Whilst aspirations are more common in children that rely on more equipment and physical assistance, we know that tone and muscle strength can play a role in coordinating safe swallows. -
This week on TheraBytes we cover the topic of Dystonia - what it is, the causes, the symptoms and treatments.
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All about high tone - Spasticity - describes something that happens to our muscles when we have an upper motor neuron injury.
A discovery of more than just a simple understanding of the ‘elastic band’ theory, especially within the context of cerebral palsy. Spasticity is another diagnosis that originates from the injured brain either at birth or post birth or even the spinal cord. It is a common reason why we observe disruption of muscle movement patterns in our children and young people. I understand now that spasticity is all about a "velocity dependent" increase in tone - it's not just tightness.
These ‘annoying’ movements can seem jerky and feel like muscle tightness and joint stiffness, all of which can be frustrating for our kids. Our children work hard, in and out of therapy to stabilise and balance their body for the simple act of standing, taking steps or reaching out. I have come to realise though that in order to get to that end movement, it can be the cause of a lot of cognitive and physical exhaustion, not to mention pain.
As a parent, this chat was an eye opener because I came to realise how spasticity can contribute to daily life - everything that they want to do during the day as well as how they can go to sleep and rest.
Dr Dayna highlights how spasticity affects our children from day to day and how we can also embrace "chill time" in amongst all the things we have to do. She also discusses the role of botulinum toxin type A, surgery, therapy and strengthening.
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An episode that highlights how important those hip X- Ray appointments are, as a standard monitoring program for children with CP. It makes us understand why we wander through the hospital corridors every 6 or 12 months and answers what it is the Doctors are looking out for.
Family discussions post X- Ray being taken, and the Doctors point to the most obvious bones of the ‘ball and socket’ on either side of the hips. We are updated on where the ball and socket is at, if the ball is slightly out of the socket it's something to monitor and come back in six months, but if it’s as it should be snugly fitting into each other then we’ll see you in twelve.
We discover more than what parents discuss at these annual visits and discover how important these visits and findings are in our children's developments and their development journeys. We discover how hip displacements and placements can increase or decrease a child's quality of life and how important the ‘ability of movement’ actually is, no matter how little it may be. -
Is pain in therapy ok?
Why the concept of "no pain, no gain" is an outdated and dangerous philosophy. -
This week we discuss the "magic" of stem cells.
Families have many questions - and in our byte-sized episode - we try to answer some of the more common questions we're asked about stem cells.
What are they?
How do they work?
What effect do they actually have?
Where can I get them?
and so much more. -
The Gross Motor Function Measure (GMFM) and the Gross Motor Function Classification System (GMFCS).
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How do you know what therapy is best?
Use the traffic light system!
🔴 Don't do it
🟠 Maybe do it
🟢 The best available
All based on the latest science, knowledge, understandings, evidence and research.
https://cerebralpalsy.org.au/wp-content/uploads/2023/06/11910_2020_Article_1022.pdf - Mostra di più