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What happens when your child is ill?
Have you ever thought you were going crazy when it came to your kids? Sure, we all get stressed out by the demands parenting requires of us whether they be mundane, daily happenings (“No you can’t have another cookie!”, “Stop teasing your brother!”) or extreme, unlikely circumstances (Hello pandemic-looking at you!)
But, what if there was something wrong with your child, (who also happens to have neurodevelopmental delays or another neurodivergent diagnosis) and no experts had any answers for you? What if you took your kiddo to all the “BEST” doctors out there and they either had no answers, their diagnosis conflicted with one another, or worst of all, they just didn’t believe your child had a problem?
Misdiagnosis happens.
I am here to tell you that it happens. And when it is your child who is struggling and suffering, it is exquisitely painful. You feel like you are living in a nightmare that you simply cannot wake from and that somehow, those around you are seeing a distorted view of reality. A 2019 article* states that, “the mindset that young children are rarely seriously ill is one of the main reasons that they are more likely to be misdiagnosed than adults are. That’s on top of all of the ways that approximately 10 percent of American adults are misdiagnosed every year. When doctors and nurses expect to see a healthy child with a common short-lived illness, they may miss the uncommon ones.”
The article goes on to list the main reasons for children receiving a diagnosis that’s wrong or delayed:
Experts may give you the brush off.
However, there are cases where a parent’s concerns are dismissed, as I was when my daughter presented with a long, puzzling, seemingly unrelated laundry list of symptoms that spanned years, nearly a decade by the time a diagnosis was finally rendered. During that time period, I was given advice from some well-meaning individuals who said things like:
Did any of this help my daughter get better or me find answers? That would be a resounding no. Oh, and by the way, that last piece of “advice” above was given to me, in front of my child, by a supposedly well-respected doctor. He dismissed all the hundreds of pages of tests, scans, medical records and prior diagnosis, didn’t help my daughter, and charged for it!
So what DO YOU DO? You don’t give up- you trust your gut! Parents know their children best and what their “normal” looks like, even if it doesn’t match the textbook image. Remember to believe in yourself and your ability to help your child. Make a bulleted list of every symptom, even if it does not seem totally related, and the date the symptom started. Research the heck out of your child’s symptoms and any test results you have, using the best and most trusted resources you can find. Become well acquainted with clinical research papers, societies for various branches of disease types ( think brain, stomach, nervous system, etc.) Join an online group for other parents who may be seeking answers for their child or who may have information to share.
The Society to Improve Diagnosis in Medicine says not to get overwhelmed by the risks of misdiagnosis. Rather, recognize there are a few key things to do, to assist in getting an accurate and (hopefully) prompt diagnosis. These tips also help if your child is in the middle of a diagnostic journey today.
In closing, you, as a parent, are the most trusted authority on your child. If you feel that something is wrong with your child and it is not getting resolved, don’t be afraid to speak up. Your child and your family deserve answers and the best possible care. Be brave and know that what your GUT is telling you, may be right. (If you have a question for Melanie (author/Kid PT Marketing) email her at info@kidpt.com)
*References
I have to admit, I’m not the most coordinated person. You may have noticed the same about yourself or your child.
The big question parents often ask me is whether their child is on the clumsy end or is there another explanation for it.
The biggest question to ask yourself is whether your child’s clumsiness is impacting their everyday life. Is it making them a wallflower on the playground? Is it making it difficult to make it through a meal without spilling or dropping something? Is the child tripping frequently or bumping into things?
Partially because clumsiness has been the butt of so many jokes in media, its often not taken seriously. The truth is that clumsiness doesn’t naturally improve and can have a really big impact on a child’s confidence and self-esteem.
Plus, therapy can help! So if there’s a big problem impacting a child’s everyday life that is making them feel bad and we have the power to improve it, we can’t overlook it!
Let’s take a look at 2 different people with Developmental Coordination Disorder (DCD), how it impacts their lives, and then we can talk more about how to know when to seek help.
Jane is a very warm and friendly seven-year-old girl diagnosed with developmental coordination disorder and dyspraxia. She has never had success with academic, gross motor or fine motor activities, and prefers to talk her way out of challenges. Talking she is good at, but only with adults. She has struggled to make and keep friends.
Jane started a PT program at Kid PT and after two months of participating in a program working on her visual-motor and rhythmic movement skills, her mom reported that not only was she moving better, but she was having so much more success socially.. Mom said, “I can imagine that if you can’t keep up with the kids on the playground, that’s going to affect your confidence playing with the other kids.”
Mom’s observation was so true and impacts so many children everyday. Our innate sense of rhythm runs in the background of everything we do. It affects how we interact with others and how we multitask emptying a backpack at school while saying hello to a friend while smiling and remembering everything you need for the day. The consistent and reliable rhythm of our brain and body supports all of these seemingly mundane tasks that can be overwhelming if you have to think about them every step of the way!
I had the opportunity to meet a brilliant 55-year-old professor a few years ago who had struggled with his body his entire life. As an adult, he received the diagnosis of Developmental Coordination Disorder.
He talked about years of trauma that occurred in gym class throughout his school years and how writing and driving were still next to impossible for him. This man, a PhD and professor, was trying to make healthy changes in his life to manage his overall health. He knew exercise was important, but could never access it because of his lack of coordination. He found swimming to be his personal answer, but wanted additional help to make swimming more successful.
During his evaluation, I identified many sensory and motor deficits that were greatly impacting all of his movement skills. His vestibular function (inner ear) was impaired, particularly the vestibular ocular reflex, which keeps vision steady as we move through space. His vision was working too hard trying to make up for vestibular impairments, so his balance was decreased at night when vision couldn’t be relied on as much.
He also had postural asymmetries that he was likely relying on for years that were causing musculoskeletal issues, in addition to affecting body awareness.His movement system had never gone on autopilot. He had limited ability to use his hands and feet simultaneously, especially when he couldn’t rely on vision for feedback.
“For the first time in 55 years I think I found someone who actually understands my coordination issues. I have spent a lot of time and money getting nowhere.” Together, we had found the reasons behind his symptoms, and were able to move forward with building a stronger foundation.
Understanding the building blocks of development of the movement system for an adult, who has only experienced failure with the practice, practice, practice approach, can change one’s perspective dramatically.
Instead of blaming yourself for not trying harder, you can own your challenges, empower your strengths, and begin to move forward. Awareness of his challenges didn’t change his body immediately, but it did change his perception of himself.
Children with Developmental Coordination Disorder (DCD) are not simply clumsy. DCD is a motor skills disorder that affects approximately five to six percent of all school-aged children. DCD has been described in many ways over the years, including dyspraxia, minimal brain dysfunction, and clumsy child syndrome. The medical community has chosen to use the term DCD as the preferred diagnostic term. DCD occurs when a delay in the development of motor skills, or difficulty coordinating movements, results in a child being unable to perform common everyday tasks. They often have difficulty keeping up with their peers during gross motor play, have frequent falls, and have a hard time doing daily skills, such as zipping and tying shoe laces.
The biggest challenge is often with learning a new movement-based skill, which is a challenge that is experienced throughout childhood. These children are often labeled as lazy (read more about how NOT lazy these kids are here!). They’re often told that if they would just try harder they could do it. In the past, it was often assumed that children would outgrow these challenges, but research has demonstrated that children with coordination problems do not simply outgrow these problems. In fact, these children are at greater risk for being sedentary and less healthy as adults than their peers. These children are also at greater risk for mental health problems. We cannot risk overlooking the struggles of these children. There is too much at risk for their futures!
Children with DCD are constant victims of imperfect practice. These children blend in with their peers well and are often not even diagnosed. Goal-oriented methods help with the practice component, but this is not enough. Life will constantly present new skills, so this creates a constant challenge, especially throughout childhood. In addition to working towards specific skills, we can work on developing a child’s building blocks of movement in order to also “teach the child how to fish.” Building the foundations of movement, rather than just teaching gross or fine motor splinter skills, improves the child’s learning abilities and decreases their reliance on others.
Children with DCD often have low tone, as well. Due to the low tone, it is generally assumed that these children are flexible everywhere. However, when you look closely at their core, the opposite is often discovered. Children with low tone typically don’t develop sufficient three-dimensional control in their core. Without the development of core control, asymmetries often remain and limit the development of core control. Often parents will tell us their kids will just randomly fall out of their seats in school (learn more about why here!).
Children with coordination disorders can vary in their vestibular responses. The vestibular system can be underactive, limiting the child’s ability to develop a strong sense of where they are in space, or the vestibular system can be oversensitive, leading to fear of movement. Low tone and hypermobility can lead to less information going from the joints and muscles (proprioception) and traveling to the brain to tell us where we are in space. Commonly, the visual system will work hard to make up for less teammates in the balance team.
Many children with coordination disorders will have difficulty getting their bodies stacked up with good alignment in order to turn their power on. These kids will often hold their bodies in an alignment that feeds into chest breathing, with their chest shifted up and their back appearing to be arched. This position and breathing pattern feeds into the child’s fight-or-flight system, or sympathetic nervous system, and gives them less ability to use their calming parasympathetic nervous system.
Children with coordination disorders struggle to put all of the pieces of their movement skills and sensory feedback together to be able to combine it with timing, sequencing, and multitasking. Being able to do this is demanded from a student, even in kindergarten! Because of this, beginning school is often the turning point for parents to seek out extra help for their child.
We move through daily life without consciously thinking about how we are moving our bodies. We can walk while daydreaming without bumping into a street sign, and we can sit in a chair without falling off while reading and writing. This may sound natural for many of us, but children with postural deficits use excessive energy, attention, and focus to fulfill all of the expectations they face each day. When our gears are synchronized, movement is automatic and children can focus on higher level skills, whether it is moving through the classroom without bumping into things or learning algebra. Filling in or strengthening these missing building blocks to develop a child’s sensory-motor system can build automaticity in order to multitask and to free the child up for higher cognitive skills. That’s where we can help!
Children with coordination disorders are often called lazy and told they’re not meeting their potential. People assume things will get better as the child gets older and that these are delays that will “catch up.” In the meantime, the child struggles with their self-worth, self-esteem, and mental health. As we said before, research supports that children do not grow out of these struggles, and that children with coordination challenges are typically more sedentary adults with increased risk of cardiovascular and mental health problems.
Supporting a child’s ability to learn the skills they need in daily life is important, but we cannot fall into the work harder and try harder pit, without also working towards long-lasting change. We can help these children fill in those missing and weakened foundational skills. There are so many ways we can help these children meet their personal potential and protect their mental health, all at the same time. They are working so hard, day in and day out- let’s acknowledge that, support their efforts, and improve their building blocks so that they are building their houses with the strongest foundation as can be.
If you see your child is working harder than other kids to get through their daily activities, don’t wait to look for help. You also don’t need an official diagnosis to get help. Reach out to us at KidPT and come in for a Discovery Visit. We will listen to your concerns, do a screening of your child and their movement skills, and help you make a plan. We’re here for you!
References
May is Arthritis month! Why are we talking about Arthritis? Well, it’s not a diagnosis that only affects adults, it affects kids too. Juvenile Idiopathic Arthritis is a diagnosis that affects kids of many ages, both young kids and older teens too. Unfortunately, Juvenile Idiopathic Arthritis (JIA) is sometimes passed off as “growing pains” by some medical professionals when a child complains of joint pain. This is seen to happen more frequently with older children or young teens complaining of joint pain because at this time in their lives, they are going through large periods of growth and physical development. Sometimes it is just growing pains, but sometimes it might not be! We wanted to give parents and therapists a guide so that you can recognize when signs and symptoms of JIA might be present and know who to seek out for help if you think your child might be showing some signs and symptoms of JIA.
JIA (also known as Juvenile Rheumatoid Arthritis), causes joint stiffness and joint swelling, also known as inflammation. JIA affects one or more joints for at least 6 weeks or more in children who are 16 years old or younger. JIA is different from Adult Rheumatoid Arthritis, because symptoms can decrease or go away completely as they get older BUT it can affect how a child’s bones develop as they grow.
JIA is an autoimmune disease. An autoimmune disease can occur when the body’s immune system becomes overactive and begins to attack its own healthy tissue. In JIA, the primary tissues that are affected are bone and cartilage around the child’s joints. When this begins to happen, it can happen chronically or episodically. If a child’s JIA symptoms are chronic, they have them most to all of the time where as if they are episodic, they may go through flare ups where their symptoms get worse and then have periods where they have no symptoms at all.
Children with JIA primarily have symptoms related to their joints like swelling, stiffness, and pain. The joints that are most commonly affected are the knees, hands, feet, ankles, shoulders, and elbows, but the spine and hips can also be involved. Pain and swelling are often at their worst in the morning or after a nap. Children can also have decreased appetite, poor weight gain, slow growth, eye inflammation, and fatigue. In systemic JIA, children can also present with a high fever, rashing, and swollen lymph nodes. The tricky thing is that some of these symptoms can seem like other illnesses or health conditions so it is important to make sure your child is seen by their primary doctor and a rheumatologist for appropriate diagnosis.
Yes, They absolutely do! Physical Therapy is essential for kids with JIA to help preserve joint function and to help strengthen the body to better support the joints. When a child has JIA, strengthening has to be done carefully so to not overstress the joints, and PTs have the expertise to help guide you and your child away from activities and sports that may be harmful for your child’s joints and toward more helpful activities. In acute phases of JIA, when your child is exhibiting a flare up of their symptoms, PT helps to maintain their joint range of motion, prevents muscles from getting too weak, and helps protect their bones from getting weak too. When your child is not experiencing a flare up of pain and stiffness, PT will help improve your child’s gross motor skills, especially ones that may have been limited due to their pain and decreased range of motion, so that they play and move with more freedom and confidence. If a child has a more chronic form of JIA, physical therapy will also help to achieve new mobility goals while making sure to keep their pain levels low and to prevent increased swelling.
If your child has a diagnosis of JIA or if you think there is a possibility they may have JIA, talk to your child’s primary care doctor about whether or not they believe JIA is a possibility and what your next steps should be. If your child is experiencing joint pain, they may benefit from physical therapy for all the reasons discussed above and more. Our therapists at KidPT can help give you more information and can take a look at your child to see if physical therapy would be an appropriate next step to help their body grow and develop in the healthiest way possible!
If you want to learn more about the different types of JIA, the process for diagnosis for JIA, and more, click to read the article below:
References:
What does movement have to do with Autism, you ask? In short, EVERYTHING! Movement is the way we interact with our environment, one of the ways we make sense of all the information around us, and the way we turn our will into action! Even something that seems so based in the brain, like writing or typing our thoughts down, involves movement to actually get those thoughts onto paper or into a computer.
But what if the wiring in your brain telling your body to move a certain way wasn’t communicating that information effectively?
Or what if the information you were getting from your environment, like the sights or feelings around you were coming in as too bright, too sharp, or not clear enough?
What if you couldn’t necessarily tell where your body was in relation to your environment or where your legs and arms were while walking around?
It would be so much harder for you to get around without knocking into things, to react to your environment in the safest way, move the way you wanted, and keep your stress level down while doing all of these things, right?!
These are just some of the small or large mountains that a person with Autism needs to climb on a daily basis to feel like their normal selves and to engage with our crazy world. Movement can be overwhelming and difficult to coordinate or extra movements may be necessary to feel where their bodies are in space. With the many lenses we can look through from a therapy perspective, we often land on the tie between Autism and movement and want to discuss the connection and why children with Autism may be inclined to move more and to move in their own individual way.
Movement to meet sensory needs:
Movement that is Difficult to Coordinate:
Now add extra distractions of daily life to the Mix!
These are just some of the big reasons why movement can be tricky and discoordinated in autistic children and how it can impact os many areas of daily life, from getting dressed in the morning to social interaction. We know this is A LOT of information to take in, but this connection is an important one to make because when movement is hard, it makes coping with everyday life hard and stressful! If you feel like coordinating movement or movement with other daily tasks is sometimes tricky for your child, call (908) 543-4390 or visit our website at www.kidpt.com to schedule a FREE Discovery Visit today!
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