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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
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.
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:
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:
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:
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:
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:
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 info@kidpt.com and schedule a FREE Discovery Visit with one of our therapists to learn more.
September 18-24 is Balance Awareness Week!
Balance is something that most people take for granted. It is our constant companion working in the background as we go through our day. We don’t think about it until something goes wrong!!! Read more
This is the third part of The Balance Series. In the first part we reviewed the components of balance. In the second part we discussed the various vestibular dysfunctions that can occur in children. In this last article we will look at the different components of treatment. Read more
As discussed in The Sense of Balance there is an important sense that may not be part of our daily consciousness, but is integral to everything we do. The vestibular system plays a role in posture, balance and vision. Read more
We all learn about our 5 senses as children: smell, touch, see, hear and taste. Our sensory systems are so important to how we experience each day. We smell the delicious food that is cooking, hear the sizzle from the pan and can’t wait to get a taste. Our sensory systems also underlie our attention, focus and motor control. An important sense that may not be part of our daily consciousness, but is integral to our ability to move, play and learn, is our sense of balance.
Read more