Category Archives: health

The Subtle Ways Long Term Medical Care Affect Infant and Toddler Development

 

hannah-tasker-333889-unsplashThe good news:  more and more extremely premature and medically complex babies are surviving.  The bad news: there is a cost to the extended and complex treatment that saves their lives and helps them to thrive.  This post is an effort to put out in the open what pediatric therapists know only too well goes on after the medical crisis (or crises) are over.   Only when you know what you are seeing can you change it.

This is not an exhaustive list; it is a list of the major complications of a complex medical course of treatment on behavior:

  1. Your child is likely aware that their coughing, crying, or other reactions will stop parents and even some medical professionals in their tracks.  I have had kids who didn’t get what they wanted learn to hold their breath until they turned blue.  If you have worked in medicine, you should know that if a child does this and faints, they will immediately begin breathing again.  It doesn’t scare me.  But it can terrify family members, teachers, and other caregivers.  They will stop whatever they were doing and may give in to any demand right away.  Many kids learn who will take the bait impressively fast.  It is very damaging to a child’s relationships and destroys their ability to handle frustration.
  2. Invasive treatments have been done while distracting your child and often without involving your child in any way.  This has taught your child not to attend to an adult’s actions or words in the same way a typically developing child will do naturally.  Since learning language and fine motor skills are highly dependent on observation, these skills are directly impacted by this consequence.  This pattern can be reversed, but it is highly resistant and has to be addressed directly.  Don’t think it will simply go away as your child recovers medically.  It doesn’t.  As soon as your child can be involved in self-care any way (holding a diaper, etc) you need to engage your chid and demonstrate the expectation that they respond and interact to the degree that they can manage.  All the time.
  3. Typical toddler attitudes are ignored because “He has been through so much already”  If your child is kicking you while you change his diaper ( a real question to me by a private duty nurse) then you react the same way you would if your child didn’t have a G-tube or a tracheostomy.  The answer is “NO; we don’t kick in this house”.  You don’t get into why, or what is bothering them right away.  The immediate answer is “no kicking”.  Not now, not ever.  Aggression isn’t unusual or abnormal, but it has to be addressed.  With understanding and as little anger as you can manage as your beloved child is aiming for your face with his foot.  The parents may be experiencing their own PTSD Can Your Pediatric Patient’s Parents Have PTSD? so be aware that their reactions may be coming from a place of untreated trauma as well.
  4. Children who are unable to speak to engage you or able to move around their home will come up with other methods to gain and hold your attention.  Some children throw things they don’t want and HOPE that you make it into a big deal.  Or they throw to gain attention when they should be using eye contact, vocalization or signing.  They wanted your attention, and they got it.  Without speaking, signing or any other appropriate method of communication.  This is not play, this is not healthy interaction.  This is atypical past 10-12 months, and should be dealt with by ignoring or removing the items, and teaching “all done” or “no” in whatever method the child can use.  And then teaching the correct methods of gaining attention and rewarding it immediately.  The biggest roadblock is that if one caregiver takes the “throwing” bait, the child will dig in and keep using that method.  Adults have to act as team managers, and if they fail, the behavior keeps on going.
  5. Children can request being carried when they don’t need the assistance, but they want the attention.  This can delay their advancement of mobility skills.  One of my clients has learned which adults will hold his hand even though he can walk unaided.  He likes the attention.  The clinic PT doesn’t know this is happening, even though the family brings him to therapy.  Like a game of telephone, each caregiver assumes that the child needs the help he is requesting.  He is not developing confidence in his own home, which should be the first place to feel safe and independent.  He depends on adults to feel safe.  Oops.

 

In many ways, my job as an OTR is to alter some of these behaviors to allow normal development to take place.  Long after those medical crises are terrible memories, the consequences of those days, weeks, months and sometimes years can have significant effects on learning and independence.

Looking for more ideas to help children grow and develop?  Read Need to Support A Child’s Independence? Offer to Help Them! and The Not-So-Secret Solution for Your Child With Motor And Sensory Issues: Dycem.  Do you have issues with your child’s siblings?  Read Are Your Other Children Resentful of Your Special Needs Child?

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Three Reasons Why Your Constipated Toddler May Also Have Bladder Accidents

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Kids with chronic constipation are a challenge to train.  It can often appear that withholding is the issue, and to be certain, fear and pain are real issues.  But there are some physiological problems caused by constipation that contribute to bladder problems, and they aren’t always what your pediatrician is thinking about.

  1. The constant fullness of the colon can lead to bladder misplacement.  The bladder can be compressed and even folded, depending on exactly where the blockages exist.  This is not good for any organ, but it is especially a problem for a hollow organ that should be filling and emptying regularly.   The sensation of fullness with a misplaced bladder is therefore corrupted, so the child is not receiving correct input.  They may feel that they “have to go”, only to have nothing in their bladder, or very little.  They may fill up really fast and have to run to the toilet before they have an accident.  Too many accidents, and a child can beg for that pull-up so that they aren’t embarrassed or inconvenienced.  Even the little ones are subject to shame that isn’t from you as a parent, but in comparison to older kids or sibling comments.
  2. Chronic constipation stretches the pelvic floor, and therefore there is both less stability and less control.  The pelvic floor muscles help us to hold the urine into the bladder in time to get to the toilet, in conjunction with the sphincters.  Poor control and poor awareness go hand-in-hand.  There are physical therapists that specialize in pelvic floor rehab, but this isn’t easy to do with children that have limited language.  Not impossible, but not easy.  Letting the problem go until they are older means risking years of psychological and physical stress.
  3. Withholding due to pain or fear is a huge issue, and it can become automatic.  This means that solving the constipation issue may not immediately result in continence.  Using a wide range of approaches, including manual therapy, behavioral strategies, medications and diet control, and even core stability and sensory processing strategies, may be needed.

My final comment is that chronic constipation is nothing to ignore.  It needs to be addressed well and early.  It often doesn’t solve itself, and it may need more than a spoonful of Metamucil to clear up.  Get help and request consultations early rather than waiting to see how things “go”!

For more information about toilet training, see For Kids Who Don’t Know They Need to “Go”? Tell Them to Stand Up and The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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Make Wiping Your Child’s Nose Easier With Boogie Wipes

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It is cold and flu season here in the states, and I have already seen my share of snot-caked little faces.  Little children get more colds than older kids and adults, and they can turn into an agitated mess when you say “Honey, I need to wipe your nose”.  These wipes are going to make your job as chief booger-wiper a lot easier!

When I first saw Boogie Wipes, I will confess that I thought it was another expensive product to separate first-world parents from their money.  After all, I grew up on dry tissues and I survived.

I was wrong.  These really work.

At first, I thought that the use of moisture was the key to their success.  Not so.  Parents told me that using a regular baby wipe didn’t “do the deal” the way a Boogie Wipe took care of the snot problem and made kids calm down about nose-wiping.  I had to find out what really made this product better.

  1. Boogie Wipes have a few important ingredients that separate them from the standard baby wipes.  The first ingredient is water.  The second ingredient is sodium chloride; good old salt.  Saline is a combo of these two ingredients, and saline softens the gluey crud that is dried-on snot.  It also thins the still-wet snot so you can wipe it away without pressing so hard on tender skin.  Yeah!
  2. The next four ingredients are aloe leaf juice, chamomile flower extract, vitamin E and glycerin.  All gentle and (to most children) non-irritating skin conditioners.  I am a huge fan of Puffs Plus tissues, but these wipes are gentler than my fave tissues.  Children’s skin is so much more delicate than ours, and the ingredients in snot are so irritating.  That is even before it becomes a dried-on coating.  Boogie Wipes leave a thin coating of skin conditioners after you wipe your child’s face.  This coating acts as a slight skin barrier for the next drip of snot.  Brilliant!

The remaining ingredients are preservatives that prevent your open container of Boogie Wipes from becoming a source of germs instead of a source of relief.  I am sure that there are children who react to these preservatives, but I haven’t yet met any families that report problems over the years that this product has been available in NY.

Unless you know your child will react to these specific preservatives, I recommend trying the unscented version first (they come in fresh and lavender scents too) and using them before your child gets a cold.  It is kinder to find out that they are sensitive to any ingredients before their skin is already irritated by all that snot from an illness.  Kids whose skin is going to react will likely do so when well, but their skin can recover from any irritation more quickly when their immune system is not also fighting a bad cold.

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The Boogie folks do sell a saline spray as well as wipes, and I am all for using saline spray to loosen up internal nose crud.  The problem with sprays isn’t that they don’t work.  They do, and they work well.

The problem is that children are naturally avoidant of us sticking things up their noses, and they are really bad at controlling the “sniff” in order to efficiently suck the spray up into their sinuses.  I teach children how to blow their noses and how to handle sprays.  It is part of my job as an OTR.  Not the best part, but nevertheless, a part of teaching ADLs.  I haven’t had much success teaching children under 3 to use nose sprays.  They just get more frightened and upset.  If you have an older child or a child that seems less afraid of nose examinations at the pediatrician, then go ahead and give sprays a try.  It can really loosen up a clogged nose.

Good luck trying Boogie Wipes, or try the generic versions that I am starting to see on store shelves.  Imitation is the sincerest form of flattery, so manufacturers are telling us that they also know that these products really work!

Parents With Disabilities Deserve Real Support, Not Pity or Praise

 

 

dawid-sobolewski-285650Parenting is hard.  Everyone that has children or works with them knows that this is true.  Parenting when you have a disability is harder by far.  Like parenting… squared.  But instead of real support, many disabled people who become parents or are thinking of becoming parents face a lot of reactions from the non-disabled.  It usually arrives in one of two packages.  First, the more positive but less helpful responses.

People see disabled parents diapering a child with one hand or with both feet, or navigating the playground with a cane and remark on how amazing it all is.  They are either pitied for their struggle or praised for their bravery.  If you have a disability, what you could really use is to be seen as an equal.  And maybe the chance to share how to get your child to wait for more than a nanosecond for juice.  Real support and real camaraderie, the kind that other parents give and get on the playground.

Of course, there is another packaged form. These are those difficult responses that can and do happen.  Parents with disabilities may be treated like criminals (how dare you subject a child to your problems?) or idiots (“You will never be able to handle the challenges”).  I suppose pity and random praise could be better than these responses, but how about another reaction?  Support.

Sadly, one of the groups that should be actively supporting disabled parents often drops the ball.  Parenting issues aren’t always on the radar of doctors and therapists.  In fact, the act that gets you into the business of parenting may not even be fully acknowledged by professionals.  Yes, that one.  Accepting that disabled people are sexual and often (or mostly) capable of having children is so rarely mentioned in training and treatment protocols that it is a true crime.  When people with disabilities do have children, receiving equitable medical care and respectful treatment as parents isn’t a given.  Don’t believe me?  Think about how many accessible GYN tables you have ever seen, or how people with disabilities might struggle to attend the soccer game to cheer their child on.  Simple things that most of us take for granted.

I think that occupational therapists have much to offer parents with disabilities.  We are known for being the MacGyvers of rehab.  We love to solve real-life problems and use our wide range of skills to help clients achieve their goals.  Supporting people with disabilities to be the best parents they can be could be as simple as teaching a parent an easier way to hold or carry their child.  OTs are rarely consulted for this, but helping clients identify the positions, adaptations and adjustments needed to make that baby in the first place is actually in the OT skill set.  All discussed with respect and sensitivity, not pity.

OT support could be as complicated as redesigning a kitchen for safe and easy meal preparation.  Feeding your child is a wonderful way to participate as a parent.  Or as subtle as identifying how visual and auditory stimuli in the home set off sensory-based anxiety and agitation in a parent.  Being as calm as you can be is important when you are raising children. Take a look at Parents With Disabilities Need The Happiest Toddler on the Block Techniques for strategies that really work to develop calmness at home.  A few sessions with a good occupational therapist can result in less stress, less pain, more skill and more confidence for all involved.

Occupational therapy isn’t always thought of as an essential service for adults with disabilities after the initial injury (think spinal cord injury rehab) or for people with more common issues such as fibromyalgia or back pain.  Perhaps that could change.  Parenting is hard.  It is harder when you don’t get the support you need.

 

Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health

 

 

tetbirt-salim-696162-unsplashAs the OT on a treatment team, I am the ADL (Activities of Daily Living) go-to person.   Why then, do so few parents ask me what ideas I have about ADLs, especially dental care?  Probably because OT as a profession has developed this reputation as either focused on handwriting or sensory processing.  Maximizing overall health and building skills by improving ADLs is often pushed to the side.  Not today.

People with connective tissue disorders have a greater chance of cavities and more serious dental problems.   Knowing what to do for your child and why it is important helps parents make changes in behavior with confidence and clarity.

Here are my suggestions to support a child that has been diagnosed or is suspected of having Ehlers-Danlos hypermobility or any connective tissue disorder:

  1. Teach good dental hygiene habits early.  Why?  Habits, especially early habits, seem to be harder to dislodge as we age.  Good self-care habits can and should last a lifetime.  Automatically brushing and flossing gently twice a day is cheap and easy.  Make it routine, not optional.  I know how this can become a fight for young children.  This is one of those things that is worth standing your ground on and making it fun (or at least easy) for children to do.  Brush together, use brushes and pastes with their favorite characters, pair it with something good like music or right before bedtime stories, but don’t think that dental care isn’t important.
  2. Research on people with typical connective tissue suggests dental care reduces whole-body inflammation.  Inflammation seems to be a huge issue for people with connective tissue problems, and no one needs increased inflammation to add to the challenges they have already.  Enough said.
  3. Tools matter.  Use the softest toothbrushes you can find, and the least abrasive toothpaste that does the job.  Tooth enamel is also made from the same stuff and skin and bone, and so are gums.  Treat them well.  Water-powered picks and battery-operated brushes may be too rough, so if you want to try them, observe the results and be prepared to back off it becomes clear that your child’s tissues can’t handle the stress.  Toothpaste that is appealing will be welcomed.  Taste and even the graphics/characters on the tube could make the difference.  My favorite strategy is to give your child a choice of two.  Not a choice to brush or not.
  4. Think carefully about acidic foods.  Lemonades, orange juice, energy drinks, and those citrus-flavored gummies all deposit acids on teeth that are also mixed with natural or added sugars.  Those sugars become sticky on teeth, giving them more time to irritate gums and soften enamel.  Easy hack?  Drink citrus/acidic drinks with a straw.  Goes to the back of the mouth and down the hatch.  At the very least, drink water after eating or drinking acidic foods to rinse things out.
  5. Baby teeth count.   Because your young child hasn’t lost even one baby tooth, you may think this doesn’t apply to you.  Those permanent teeth are in there, in bud form.  Children can develop cavities in baby teeth as well as permanent teeth.  Gum irritation is no different for young children, and they are less likely to be able to tell you what they are feeling.  Sometimes the only sign of a cavity in a young child is a change in eating habits.  This can be interpreted as pickiness instead of a dental problem.
  6. Consider sealants and fluoride   I know…some people are nervous about the composition of sealants and even fluoride, which has been in the public water system here in the US for a long time.  I would never criticize a parent who opted out of either.  It is a personal decision.  But be aware that they don’t increase tissue irritation, and they protect tender enamel, tooth roots and the surrounding gums.  At least have an open discussion with your pediatric dentist about the pros and cons.  I am mentioning sealants here specifically because some parents aren’t aware that this treatment option can reduce cavity formation and gum deterioration.

Looking for more information about ADLs and hypermobility?  Take a look at Easy Ways to Prevent Skin Injuries and Irritations for Kids With Connective Tissue Disorders and Teach Spoon Grip By Making It Fun And Sharing a Laugh With Your Child and Low Muscle Tone and Dressing: Easy Solutions to Teach Independence.

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CMV: The Potentially Disabling Virus Your OB Isn’t Mentioning

The New York Times ran a moving story in their October 25, 2016 issue about children who contract cytomegalovirus (CMV)  from their mothers while in utero.  CMV is a Greater Threat for Infants Than Zika, but far Less Often Discussed reminded me of the children I have treated with CMV:  multiply-disabled, with parents that didn’t know what those initials stood for until they heard them from their child’s doctor at diagnosis.

Deafness, blindness, cognitive and motor delays; sometimes the whole enchilada.  All from a virus that may not be evident in the mother or her family.  It is rampant in toddlers, those adorable beings who pick their nose and then touch every cookie on a plate, who put toys in their mouth then want a sip of your drink.

The most likely carrier of CMV in your family is your toddler in daycare.  They are bringing home more than macaroni pictures.  They may not even spike a fever and still have CMV.

The NYT reported that the American College of Obstetricians and Gynecologists does not insist on obstetricians mentioning this virus to patients because no treatment is available and no action is an iron-clad preventive.  They believe that patients should initiate the discussion and discuss what their concerns are rather than be told directly about CMV.

That’s like saying that because I cannot promise that you will never be struck by lightening, I won’t mention that sitting under a tree in a storm means that you are taking a risk!  I will let you ask me about how to prevent electrocution.

This is a bit of effort, but there are simple things you can do to reduce but not eliminate your risk while pregnant by:

  • wash your hands well after changing a child’s diaper or wiping them after toilet use.  Don’t check your phone on the way to the sink; wash first.
  • Do not share drinks or food with your children while pregnant.  Serve them a bite on their plate, not by nibbling on your food.  Cheerfully pour them a fresh cup of what you are drinking.
  • Teach your children to wash their hands well, and encourage hand washing in the adults in your home.

I wash my hands as soon as I enter a family’s home for treatment, regardless of the age of the children.  I don’t know if that mom is pregnant.  She might not know yet either.

Wash your own hands like it meant the future of your unborn child; it could.

Special Needs Kids and Toothbrushing, Part 3; The Sensory-Motor Experience and the Behavioral Strategies that Support Success

Now that you know what issues your child have that made toothbrushing difficult, and you have made brush and paste/rinse choices, it is time to think about the influence of timing, the environment, and the approach to the task.

I often recommend that families practice skills outside of their natural timing.  Let’s face it; running off to school and bedtime are highly charged times of the day.  Almost any child is going to feel it, and certainly any rushed or exhausted parent.  No one is at the top of their game.  Try practice on an off-hour, make it short and if possible follow it up with something fun.  Human beings cannot help but associate events, and if brushing is followed by games or outdoor play, it is going to have a subconscious effect.  I really like the practice concept in “The Kazdin Method for Parenting the Defiant Child”.  Even though most of his techniques are more suited to a slightly older child, the idea that you can practice a skill at a calm time is a great one.  Both parties are in a different mindset.

Think of the bathroom the way a designer would.  No, you don’t have to buy new towels, but you might want to use a dimmer on bright lights and think about the noise the running water makes.  Sensory sensitive and poor modulating kids can be just stimulated enough to push them into irritability. I love the calming power of lavender, and your child might too.  There are children who cannot handle much in the way of scent, and even your plug-in deodorizer irritates them.  Move it out before starting your routine and see if that has a positive effect.  If you are not a sensory sensitive person, you might not even notice how odorous the dryer scent on the towels or the fancy soaps are.  Your child might.

Use softer tones in your voice, especially if there is an echo in your bathroom.  The same reason you sound so good in the shower could be a contributor to your child’s difficulties.  Sound bounces off tile in a different manner, and the lack of sound-absorbing carpeting and draperies could be a factor.  If your child has postural issues and is unsteady or is known to dislike his head tipped back, then re-think your position too.  A child standing on a wobbly stool with his head in your hands and tipped backward is likely to resist.  I know it sounds bizarre, but the first position and technique with a very upset toddler can be to cradle him in your arms, fully supported up to the top of his head, and use those xylitol wipes while terming it “toothbrushing”.  Do the singing, low lights, the whole deal.  You won’t be doing this when he is 12, but sometimes you have to make things really safe and comfortable to move forward.

Put a positive spin on toothbrushing.  Even if this has been a source of stress, your smiling face and positivity can help.  Do your best Oscar-winning performance if you can (another reason to practice on the off-hours).  At the very least, firmness and a sympathetic “Fast Food Rule” type response is useful.  For people who haven’t been reading my blog, that is the cornerstone of Dr. Harvey Karp’s Happiest Toddler on the Block approach.  You want your child to know that you understand what he is saying and feeling, but you don’t necessarily agree that we don’t do toothbrushing.  You acknowledge his aversion and express positivity and how there is something good at the end of the task.  If you are too emotional, even too sympathetic, you risk adding more emotion to the experience, something a sensitive and upset child really does not need.

Some children really love to hear you sing a brushing song, some like to use a sticker reward chart, some like a felt board where they move completed activities to the other side of the board.  It is risky to reward a child for something that is really a daily life skill, but at first some parents give it a try and then fade out the reward.  Every family is different.

This is my final post on the subject of toothbrushing.  I hope this helps some families turn around a common source of frustration and have a better day!