Trusting Your GUT when your child is ill

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?

Mom gives daughter medicine

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:

  1. Attitude: Since most children are healthy, and most illnesses resolve on their own, doctors may tend to reassure parents rather than accept concerns are real
  2. Biology: Young children’s bodies and systems are radically different than adults, so they present and respond in unexpected ways
  3. Unequipped: Most children’s emergency room visits are to community or adult hospitals that often don’t have needed kid-sized equipment or pediatric experts. Urgent care centers have similar issues.
  4. Communication: Young children don’t understand or know what is wrong so they’re dependent on parents or caregivers to recognize and then interpret their symptoms

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:

  • “Just accept her as she is and stop looking for answers that aren’t there.”
  • “Doctors are the experts and you have to trust them when they tell you something, even when treatments don’t work or something seems to be missing in their answer.”
  • “You want her to be sick so that you get attention or sympathy”
lab test machine

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.

  1. Sign up for the doctors’ or hospitals’ patient portal and check the records thoroughly. “Is the information correct? Are the medications and medical history correct? Read it, correct it, and tell the doctor” or the staff.
  2. Important test results can slip through the cracks and that may lead to misdiagnosis and lack of treatment. Keep track of any tests that are done on your child. That includes blood tests, urine tests, x-rays, and any other type of scan. If your child has a test, simply ask when the results are expected and note it in your calendar. If you don’t get called or emailed with results, call and ask about them. Remember, “No News is No News.” Don’t accept being told, “We will call you if there’s a problem.”
  3. Trust your gut. You’re the people who know and care about your child the most. All of the experts encourage parents to speak up if they feel their child’s symptoms aren’t getting enough attention or if there’s any confusion between what the family is saying and the medical professional is hearing.
  4. If your child isn’t showing signs of improvement, get a second opinion. Ask friends and family members in town for a recommendation of a pediatrician in a different practice, or ask your current pediatrician for a specialist to give a second opinion.
  5. Be prepared before you bring your child to the doctor or an emergency room. While your child is healthy, check if there’s a pediatric urgent care or emergency room close to where you live. If you have a planned appointment, there is a valuable tool you can start using today. The SIDM Patient Toolkit is a handy step-by-step workbook with sections to fill out before, during and after your doctor’s appointment.
  6. If you’re using the internet to look for more information, be sure to use reliable and trusted sources. The American Academy of Pediatrics’ (AAP) Healthy Children section is a great place to begin. 

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

https://www.improvediagnosis.org/dxiq-column/why-your-child-is-more-likely-to-be-misdiagnosed-than-you-are/

child's facing ocean view of ack

Hi all! We know June for being the last month of school and the month where summer fun begins, BUT did you know June is also Scoliosis Awareness Month? Yes! June is the month where we highlight Scoliosis, a diagnosis that affects so many kiddos (and adultos☺️) across the world. So, for Scoliosis Awareness Month, we wanted to bring you all some information about Scoliosis, what it is, and how Physical Therapy can help! 

What Is Scoliosis?

Scoliosis is a diagnosis that involves a curvature of the spine, the bones that run along the middle of your back. If a child is affected with scoliosis, as they grow, their spine will begin to curve in either the cervical, thoracic, or lumbar spinal regions, aka the neck, upper back and lower back regions. Changes in the spine’s natural anatomy create imbalances in the body that may cause your child’s shoulders, shoulder blades, hips, or ribs to look unlevel or uneven. It may also cause their spine to appear curved when bending forward, may affect their overall mobility, and may create back pain later in life if left untreated. If a child’s scoliosis is very severe, it can also affect the shape and growth of their internal organs, like the lungs or the heart. 

Scoliosis Types

There are four different types of scoliosis: idiopathic, neuromuscular, congenital and degenerative. Degenerative scoliosis is often diagnosed above the age of 65 due to normal wear and tear on the spine and surrounding joints. Congenital scoliosis occurs as a result of spinal or rib deformities present at birth. Neuromuscular scoliosis can occur when a child has a neuromuscular condition, like cerebral palsy or muscular dystrophy. With Neuromuscular scoliosis, as the child grows, their muscles pull on their bones as they move and continue to participate in developmentally appropriate activities. When a child has a neuromuscular condition, they might not be moving with similar movement patterns or frequency to a child that is developing typically. This means that their muscles are not pulling the same way on their bones as a typically developing child’s muscles are, and this can cause their bones to grow abnormally, creating a potential for scoliosis. 

Most Common Form of Scoliosis

Adolescent Idiopathic Scoliosis is the most common form. It can be a confusing diagnosis for families to receive because it is often unknown as to why the spinal scoliosis is occurring in the first place. Medically, doctors will often recommend either a “watch and see” approach, monitoring the spinal curvature to see if it is progressing or staying the same. If a scoliotic curve is on the more severe side, or continues to worsen with time, doctors will often recommend bracing to try to prevent the curve from continuing to worsen or will recommend surgery to correct the curvature. Doctors will usually also recommend Physical Therapy, and that’s where we come in! BUT, you don’t need to wait- starting Physical Therapy at the first signs of scoliosis can prevent it from progressing in the first place!

Tips for Parents

What are some signs that you should ask your child’s pediatrician or a physical therapist about scoliosis?  Take a look at your child from behind without a shirt on.  Look at your child’s shoulders, shoulder blades, and hips.  Compare the left and right sides looking for one side higher than the other.  If you see any asymmetries between the two sides of the body, that is a sign to have it looked into by a medical professional.

How PT Can Help Your Child

In PT, we will work with you and your child as a team to help decrease any soft tissue and muscular tightness that may be pulling on your child’s spine while they are growing. We will also work with your child to improve their core strength so that as they continue to grow and improve their mobility, their body can better support itself to control and maintain their new, more-symmetrical posture. If they are having trouble holding a more symmetrical, stable posture while sitting at their desk in school, a physical therapist can also help improve your child’s postural endurance and offer solutions to help improve their sitting posture so that they can sit while supporting their body in class.

Putting It All Together

We understand that scoliosis can be a very scary diagnosis, especially when your doctor starts describing the ways it may affect them and about your treatment options. Through treating kiddos with mild to severe scoliosis, we have found that acting quickly and starting PT as soon as your child receives a diagnosis of scoliosis is the most effective way to help prevent future progression of their spinal curve. We are here to support you through the decision making process and to help provide therapy that will work to improve your child’s body through movement in a way that is friendly and fun! 

Call Us -We are here for your family ☎️

If your child has just been diagnosed with scoliosis, or is being watched for scoliosis and you would like to be more proactive with their care, reach out to us with questions and to schedule a free Discovery Visit so that we can see if physical therapy here at KidPT is the right match for you and your child. 

References: https://www.btetechnologies.com/therapyspark/4-types-of-scoliosis-and-their-interventions/

Happy Father’s Day to all of our amazing Kid PT Dads!

Dads know just how to bring a laugh and a giggle to the moment.

Check out these ideas to bring some movement fun to celebrate how much your kiddo loves you on Father’s Day!

First, hold each other’s hands. Can you lift one foot and hold it? Try taking turns closing your eyes and see if you can still both keep your balance. Add in singing a song together like the ABCs and see if you can balance all the way to Z.

Next, have Dad get into the Downward Dog position! How many times can the child crawl under, run around to the start, and climb under again! Let’s really challenge Dad with this one!

Finally, its time to fly! There are many fun ways to do this, from piggyback rides to holding the child and zooming around the house. My favorite way is for Dad to lie on his back his his hands and feet up. Dad puts his feet on the child’s belly, holds the child’s hands, and lifts them up! This is so much fun, just be careful. Be sure there is nothing nearby the child can fall on and only go as high as you can control.

What other movement adventures can you have today?

Did you go on a bike ride together, go on a hike or walk to the park?

Have a Happy Father’s Day!!!

The kids are getting out of school, the weather is getting VERY warm, and many families are looking for things to do! Many people are starting to think about backyard barbecues and other fun, family friendly activities as we picture our summers! Don’t forget to include some gross motor fun into your next backyard barbecue extravaganza. These activities below are sure to keep your kids moving and having a blast!

Sack Races

Sack races are so much fun and allow kids to jump, jump, jump to the finish line in a way that engages their competitive side and gets all of their energy going! Jumping with your legs together is a great way to work on coordination and strength while getting a little bit of that extra energy OUT! If you think this would be a fun idea, you can buy sacks for outdoor racing here:

Movement Circle

Have all the children stand in a big circle, where they can all see each other! In a movement circle you can play fun games like “Pass the move” where every child does one move and then everyone repeats the move. These moves can be linked together to form a whole mini dance to keep kids moving and grooving in a funky way! In the circle, they can also move along to kids music specifically created for movement, like “Simon Says”, “The Hokey Pokey”, and “Animal Action”. Look for children’s movement songs on YouTube, Spotify, or other music Apps. There is also a whole YouTube channel of children’s movement songs through GoNoodle too, if your child loves silly characters! Here are a few links to some fun ones: 

Simon Says

Hokey Pokey Freeze

Animal action: https://www.youtube.com/watch?v=30ePPeUbwSs

The Floor Is Lava Dance

GoNoodle’s YouTube Channel

Building an Obstacle Course

For this one, have each child choose one item they want to put in their obstacle course (so that no one is touching the same items). Have them make up a specific rule for how to use their part of the obstacle course and have each child explain that rule to their friends. By the end of all the explanations and the building process, they will have created a full obstacle course as a team! This will help them use their creativity and collaboration skills before each of them jumps into action to move through their creation, helping them to work on strength and coordination too!

Hopscotch

This old classic is great for working on jumping and hopping, and makes kids switch feet on every step, so it is also great for coordination. It can be set up with simple sidewalk chalk on a driveway or blacktop at the park. Jumping between numbers can be made even more fun and tricky if you ask the children to skip certain numbers, say their top ten favorite animals with every jump, or come up with their own wacky pattern for jumping through the squares.

Have fun out there everybody, keep moving, and enjoy the start to your SUMMER! Let us know @Kidpt on Instagram and @KidPTNJ on facebook or by emailing us at info@kidpt.com to tell us how these outdoor games worked out and if you want more fun ideas for how to keep your kids moving this summer! 

There is so much nature and wonder to experience in a garden.  Here in the KidPT garden, we invite your kids to participate in shoveling the soil, transferring dirt with a wheelbarrow, jumping over the rows of vegetables, imagining they are earthworms tilling the soil, shading the garden as nearby trees, and invading the garden as clever rabbits. 

Shovel the Dirt

  1. Have your child stand on a pillow with a pile of cotton balls (or any small item) on the right and an empty bucket to the left
  2. Use a small beach shovel or kitchen spatula or tongs and have your child squat to pick up the balls and then transfer them into the bucket one at a time. 
  3. Then switch and place the cotton balls on the left and the bucket on the right

Wheelbarrow

Have your child assume the wheelbarrow position by pushing up through their hands on the ground and have a sibling or friend hold them at their knees. The child on the ground will walk forward on their hands while the other child follows them supporting their lower body in the air. Then have them switch roles. If the child’s back is arched (aka the stomach is dipping downwards towards the floor and is lower than the chest and ankles), make it easier by holding them closer to their trunk until they can keep their back straight. Too easy? Hold the child further from the trunk and as close to the ankles as they will tolerate.

Jump Over the Rows of Vegetables

Line up pillows or rolled up towels on the ground and have your child jump over them. Have them name the row of vegetables that they are jumping over as they jump. Switch it up by having them jump sideways and backwards too.

Earth Worm

Start in a standing position and have your child slowly lower their hands down to the ground in front of their feet. Then walk their hands forward as far as they can with their feet planted on the ground. Then walk their feet up towards their hands. Repeat as they squirm their way across the room. 

Tree Pose

Have your child stand on one leg and rest their other leg’s foot on their inner thigh. Once they gain their balance in this position, have them wave their arms in the wind just like a tree. Who can make a tree with the largest branches? Too hard? Instead, have your child place one foot on a step that is in front of them.

Rabbit Under the Fence

Set up the imaginary fence by extending a long piece of tape or string from one kitchen table leg to another ( or any stable surface) at about a foot height off the ground. Then have the kids take time to army crawl under the imaginary fence to the garden. 

What are your family’s favorite garden activities and plants to grow? 

Juvenile Idiopathic Arthritis 

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.

What is Juvenile Idiopathic Arthritis?

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. 

What causes Juvenile Idiopathic Arthritis?

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. 

What symptoms do children with JIA have?

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.

Do kids with JIA benefit from Physical Therapy?

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:

https://www.hopkinsmedicine.org/health/conditions-and-diseases/arthritis/juvenile-idiopathic-arthritis

References:

  1. https://www.hopkinsmedicine.org/health/conditions-and-diseases/arthritis/juvenile-idiopathic-arthritis
  2. Rhodes, V. J. (1991). Physical therapy management of patients with juvenile rheumatoid arthritis. Physical Therapy, 71(12), 910–919. https://doi.org/10.1093/ptj/71.12.910 

Happy Mother’s day to all our moms. Today we celebrate the unmatched and superhuman strength of mothers. Motherhood comes in many forms from biological to adoptive to a grandparent caregiver to legal guardian to working mom to stay at home mom to single mom to military mom and so much more.

Every mother is different and has their own strengths and weaknesses, but we want to applaud you and encourage you for all you do. 

Raising a child is the most vulnerable, life-giving, exhausting, and worry-filled adventure we can go on. From the extreme highs to the devastating lows, it can feel indescribable. But our legacies are the children we love and support so that they can live a life of joy and meaning. 

On this Mother’s Day we are celebrating a few of the many strengths of moms. Today is a day to just honor and acknowledge who you are day in and out. No need for tips, tricks, or advice today as you are enough, mom. 

Emotional Strength

You deserve to be applauded for the emotional weight you carry in your home. It can be hard to be the emotional reservoir for an entire family. It can seem that you are always worrying about something as a mom whether it’s managing their schedule, academics, nutrition, health care, transportation, sleep, etc. Sometimes the constant thoughts and the emotional weight can take a toll on you and all you can do is just sit on the couch in mental exhaustion. This is no sign of weakness when you consider the strength and endurance it requires to constantly carry and nurture your family’s needs. 

Physical strength

The physical strength needed to be a mother is nothing short of extraordinary. From the physical expense of carrying a child in the womb and the physical changes that your body undergoes while nurturing your baby’s life to the physical demands of carrying, bathing, cleaning, feeding your child and managing your household. Sleep often becomes a long lost friend from sleepless nights caring for your infant to catching up on “me time” or other tasks while the kids are in bed. There is nothing like the physical strength of a mother to overcome these hurdles in order to provide for the needs of herself and her family.

Resilience 

Every day comes with its own journey, victories and disappointments. Parenting is a marathon and it may feel hard to see the progress of your parenting each day. Despite this, you push on and do your best to remain hopeful and engaged. It may seem the values you are trying to teach your children are not taking root and that your efforts are ineffective. But how sweet it tastes when you are awarded little glimpses of your children practicing strategies that you have been intentionally trying to instill in them, whether it’s noticing their kindness in how they treat others or signs of their developing bravery, emotional intelligence, and self regulation. You are resilient and your children will learn to be resilient through your example. Don’t underestimate the moments when you help them conquer their fears and how you make them feel heard and understood when they are struggling. It’s all too common for mothers to look around and convince themselves that everyone else is doing life better and that other mothers always do the right thing. It’s normal to have these feelings and doubts and to perceive that your world is in chaos. It is hard to figure out which route or philosophy to take with parenting and it is easy to feel overwhelmed. Despite this negative self talk, things are going better than you imagine and your kids are thriving from your strength and resilience. 

From our families to yours, we hope this Mother’s Day you feel seen, affirmed, and loved.

Savvy parents know that every child has their own sensory preferences and things they avoid. Whether it is picky eating, not liking the seams in socks, or having a hard time sitting still because the child’s body has the wiggles, every child has their own sensory world. Every adult has their sensory preferences too, but we learn to manage our needs by taking walks when we need to wake up a bit, chewing gum to stay focussed, or shaking our foot while listening to a speech.

Every child will have their own personal sensory profile, but when is it time to get help. When sensory preferences are impacting daily life, that’s a good time to seek help from an occupational therapist or a physical therapist.

Below we’re going to introduce the difference sensory systems and give you some tips to start figuring out what sensory strategies will help your child.

Proprioceptive System

Kids who seek out rough play, jumping and/or crashing, or our kids who like to lie down on the ground a lot may need more input to this system.  It helps us to sense movement and organizes our bodies to help with coordination, body awareness and spatial awareness.

TRY activities that involve:

Vestibular System

Kids who appear to seek constant movement, are risk takers and like to be upside down may need more input to this system.  Some kids may look more sedentary or lethargic and may also need some vestibular activation! This is another movement sense, it is related to our head position in space, and gives our bodies information about balance and is closely related to our visual system. 

TRY activities that involve: 

Tactile Input

Kids who are constantly touching and fidgeting may need more input in this area.  Kids who are extra sensitive to seams or clothing, or avoid getting messy might be on the opposite side of  tactile processing.  It refers to our sense of touch, and can impact all areas of function from eating to walking to feeling the  nuances of toys and materials during self-care and play.

TRY activities that involve: 

Auditory Input

Kids who are constantly humming, yelling, and making other noises, they may need more auditory input than other children. Kids who zone out, seem to ignore you, or struggle to shift from one listening to another listening cue/instruction (or for example, respond to their name). 

TRY activities that involve: 

Visual Input

Kids who require more visual input may look closely at objects. They may seek out moving or spinning objects. They may have difficulty focusing on information presented visually.   On the other end, lights might be too bright or the child may struggle to adjust to lighting changes, or become overwhelmed incertain lighting, like fluorescents. 

TRY activities that involve: 

Olfactory and Oral Sensory Systems

Kids seeking out input to these systems may lick or smell objects like crayons or toys. Chewing also provides proprioceptive input, so kids may bite or chew on objects (think pencils or shirt collars).  May be averse to tastes or smell, picky eaters tend to be sensitive in this area. 

Links to some of our favorite sensory products:

Need some more help finding sensory savvy solutions for your child! Reach out to us at care@kidpt.com and schedule a FREE Discovery Visit with one of our therapists to learn more.