Quiz: Do I Have Narcolepsy?

What Is Narcolepsy

What Is Narcolepsy

What is Narcolepsy?

Quiz: Do I have Narcolepsy?  What is it exactly?  Narcolepsy is a neurological disorder characterized by the brain failing to regulate sleep-wake cycles.  For most people, it takes about 90 minutes after falling asleep to reach the first stage of Rapid Eye Movement (REM) sleep which is when we dream and our muscles are paralyzed.  Throughout the night, people alternate between REM and non-REM sleep.  With narcolepsy, REM sleep happens almost immediately and also occurs involuntarily during waking hours.

A common misperception of Narcolepsy is that people with the disorder are excessively sleepy.  However, Narcolepsy does not affect the amount of sleep the person needs, they sleep a normal amount of time in comparison but are unable to control the timing of their sleep.  This is where there are instances of falling asleep at work or school, or while driving.  That is not to say that all people that fall asleep behind the wheel are narcoleptic.

Narcolepsy affects both sexes and typically begins showing significant symptoms in adolescence or early adulthood.  The symptoms tend to gradually get worse over time.  Researchers recently found that there may be a link between Narcolepsy and a hypocretin production deficiency in the brain.  Do you think you may have Narcolepsy?  Ask yourself the questions in the below quiz: Do I have Narcolepsy, answer honestly.  If you answered yes to multiple questions, you may want to talk to your doctor.

 

Narcolepsy Symptoms

  • Excessive Daytime Sleepiness
    Nap Attack Sitting in Office Chair

    Nap Attack Sitting in Office Chair

    • This is the most common symptom.  A big differentiator between this symptom and those without the disorder is that for Narcolepsy patients, this can occurs even when they’ve gotten a full night’s sleep.
    • They may fall asleep while conversing with others, eating, driving, working, or other inappropriate times.  My son once fell asleep during a conversation sitting at the table in Denny’s while eating meal.
  • Cataplexy
    • Sudden loss of muscle tone (going limp) which can be triggered by emotional stimulation such as laughing, being surprised, or angered.
    • May result in the person collapsing.
    • May only affect certain muscle groups.
    • May cause the knees to buckle.
    • May cause slurred speech.
    • Does not lose consciousness as they sometimes do with seizures.
  • Hypnogogic Hallucinations
    My Son Hiding From Hallucinations

    My Son Hiding From Hallucinations

    • Scary and weird dream-like experiences that happen during the transition from wakefulness to sleep and include the person’s actual environment.
    • My son, when he was in second grade, described this as the items hanging on his walls moving and the family pictures turning into terrifying monster faces.
  • Sleep Paralysis
    • Temporary inability to move while waking up.
    • May last a few seconds to a several minutes.
    • May accompany hallucinations.
  • Disturbed Nocturnal Sleep
    • Inability to sleep through the night, waking up repeatedly.
  • Leg Jerking
  • Nightmares
  • Restlessness

 

Quiz: Do I Have Narcolepsy?

If you suspect you have Narcolepsy, ask yourself the following questions.  Write them down along with your answers.  If you answered yes to multiple questions, start a sleep diary.  In your sleep diary, record the symptoms you experience, when you experienced them, when you slept, how long you slept, what dreams you remember, any hallucinations you experience or paralysis.  Do this for a few weeks and then take it to your doctor.  Your doctor will ask want to know your complete medical history as well as that of your family.  You will likely then be referred to a sleep specialist to begin testing for a sleep disorder.

  1. Do your muscles go limp when you laugh or get excited?
  2. Do you fall asleep in inappropriate places such as work or school?
  3. Are you clumsy or prone to accidents?
  4. Have you had to pull off of the road because you were sleepy?
  5. Have you ever fallen asleep while driving?
  6. Do you have trouble focusing or concentrating?
  7. Do you have vivid dreams as you’re falling asleep?
  8. Do you have vivid dreams as you’re waking up?
  9. Do you fall asleep during movies or at other events such as reunions or parties?
  10. Do you ever feel like you’re paralyzed when in bed?
  11. Do you ever have nap attacks and need to lay down during the day?

Please note, answering yes to multiple questions here does not necessarily indicate that you have Narcolepsy.  It simply indicates that you may have some sleep issues that should be addressed by a sleep specialist.  For example, I experience many of these myself.  I have Sleep Apnea which is not the same as Narcolepsy.

Narcolepsy Treatment

Narcolepsy does not have a known cure.  It can be treated to help the symptoms, though.  Typically, doctors will prescribe stimulant or anti-depressant medications to help treat this disorder.  Behavior Therapy may also be prescribed.  If you’ve taken the above quiz: Do I Have Narcolepsy, and determined that you might, rest assured that there are treatment options that can help your symptoms.  But do talk to your doctor you need an official diagnosis to gain effective treatment options.

Narcolepsy Diagnosis

Narcolepsy Diagnosis

Changes in lifestyle can help reduce some of the symptoms.  Behavior Therapy will help to set the appropriate changes such as taking scheduled naps during the day and not eating heavy meals.  They may also work with you to set a sleep schedule and advise you to strictly adhere to it.  You’ll want to be on a routine exercise and meal schedule free of alcohol, caffeine, and nicotine.  While not always effective, these practices may help with some of the symptoms of the disorder.

Counseling may also be recommended to help you cope with the disorder.  The general public has many misconceptions of this disorder and it is not widely understood.  I can’t tell you how many times I was told to “make” my son go to sleep.  How do you do that?  I made him go to bed at a certain time each night but I had no way to make him go to sleep without drugging him and I don’t believe in that, in fact, I believe…last I checked…it was a felony to drug people?  Maybe I missed a memo.

Where medications are concerned, there are several different types of medications that may help reduce Narcolepsy symptoms.  Stimulants are used to help eliminate the excessive daytime sleepiness and improve alertness.  Antidepressants can help with the cataplexy, hypnagogic hallucinations, and sleep paralysis.  Sodium oxybate may be prescribed to help induce sleep, reduce daytime sleepiness, reduce cataplexy, and improve disturbed nocturnal sleep.  As with any other medications, the goal is to improve symptoms without significant side effects.  However, before agreeing to and implementing these treatments, be sure that all appropriate testing was done and you feel in your gut that the doctor is correct.  Especially when it comes to your children.  Narcolepsy is yet another medical condition that mimics ADHD symptoms and other neurological conditions.  In my son’s case, he can’t be treated with Narcolepsy medications because that would make his Epilepsy worse.  Therefore, we treat his Narcolepsy with Behavior Therapy only.

Conclusion

Narcolepsy is one of a very long list of medical conditions that has symptoms which mimic ADHD.  The big problem with this is that children with Narcolepsy may go undetected because ADHD medications help some of the symptoms.  This can lead to injury from accidents and heightened fears in your child from the paralysis and hallucinations.

With an accurate diagnosis and effective treatment, many narcoleptic people grow up to be very successful individuals.  There have been many:

  • Aaron Flahavan (Soccer Player)
  • Arthur Lowe (Actor)
  • Dr. Claire Allen (Research Scientist with the British Antarctic Survey)
  • Franck Bouyer (French Cyclist)
  • Gabe Barham (Drummer, Percussionist)
  • George Church (Harvard Professor and Molecular Geneticist)
  • Harold M. Ickes (Politician, Lawyer, White House Deputy Chief of Staff for President Bill Clinton)
  • Harriet Tubman (Abolitionist, Activist, Humanitarian, Union Spy, Writer)
  • Jimmy Kimmel (Comedian, TV Producer, Film Producer, Screenwriter, etc.)
  • Jinkx Monsoon (Stage Performer)
  • Kurt Cobain (Guitarist, Songwriter, Musician, Lead Singer of Nirvana)
  • Lenny Bruce (Comedian, Screenwriter, Actor)
  • Louis Braille (Inventor of Braille)
  • Nastassja Kinski (Model, Actor)
  • Nicole Jeray (Pro Golfer LPGA)
  • Teresa Nielsen Hayden (Editor, Essayist, Teacher, Author nominated for 5 Hugo Awards)
  • Thomas Edison (Entrepreneur, Film Producer, Scientist, Inventor of the Light Bulb, etc.)
  • Winston Churchill (Statesman, Painter, Politician, Journalist, Oretor, etc.)

As always, with accurate diagnosis and effective treatment, narcoleptic individuals can bring an abundance of creativity, compassion, and brilliance to society.  While it’s easy to get caught up in blaming parents, vaccines, or poor decisions for their child’s disabilities, criticizing labels and other methods of raising awareness, and theorizing about healthcare conspiracies, these people are part of our everyday lives and we owe them understanding at the very least.  They give us the same in the best ways they know how.

Raise Awareness

Raise Awareness

Yes, there is an epidemic of misdiagnoses that causes annoyance and frustration surrounding children with ADHD, Narcolepsy, and many other conditions and disabilities.  The problem is that the very labels that society criticizes us for using are the ones that lead to our children getting the help that they desperately need.  Ignorance is bliss.  It’s easy to judge when it’s not your problem.  How about we educate ourselves and raise some awareness instead?  Be part of the solution, not the problem.

Talk soon,

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Sensory Processing Disorder – Toddlers

What is Sensory Processing Disorder?

Sensory Processing Disorder

What is it?
Copyright: lwphotography / 123RF Stock Photo

Sensory Processing Disorder (SPD) used to be called Sensory Integration (DSI) Dysfunction.  It causes sensory signals to not get organized into appropriate motor responses and behaviors when the sensory messages are received by the nervous system.  In other words, the sensory messages are misinterpreted by the nervous system.

A study done by the SPD Foundation found that 5% to 10% of children without other disabilities experience SPD while it is prevalent in 40% to 88% of children with various other disabilities.  It is believed that there may be a relationship between Sensory Processing Disorder and the atypical behaviors associated with pervasive developmental disorders like Autism Spectrum Disorder (ASD), Fragile X Syndrome, and Cerebral Palsy.

The study also found that while symptoms of Sensory Processing Disorder overlap with other conditions, Attention Deficit Hyperactivity Disorder (ADHD) in particular, the empirical data in the study proves that the two conditions are completely distinct from each other.

Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (SPD) p. 249 – 250 by Lucy Jane Miller, PhD, OTR lists ten research-supported statements about SPD:

  1. It is a complex disorder of the brain affecting both adults and developing children.
  2. Tools used to identify children with the disorder include: parent surveys, clinical assessments, and laboratory protocols.
  3. The prevalence of SPD in the general population is at least 1 in 20 people.
  4. The occurrence of SPD in children who are gifted and those with ADHD, Autism, and fragile X syndrome is much higher than that of the rest of the general population.
  5. A significant difference has been found between the physiology of typically developing children and those with SPD.
  6. Likewise, a significant difference has ben found between the physiology of children with ADHD and those with SPD.
  7. The disorder has unique sensory symptoms unexplained by other known disorders.
  8. Heredity could be one cause of the disorder.
  9. The sympathetic and parasympathetic nervous systems of children with SPD are not functioning typically, according to laboratory studies.
  10. The theory that Occupational Therapy is an effective intervention for treating SPD symptoms is supported by preliminary research data and decades of anecdotal evidence.

 

Symptoms of SPD

Much like other developmental disabilities, the symptoms of Sensory Processing Disorder vary from person to person, as well as age group.  A person may experience only some symptoms and at varying intensities.  Additionally, symptoms tend to vary by age group:

Infants & Toddlers:

  • Difficulty eating
  • Refusal to go to people other than parents
  • Difficulty falling or staying asleep
  • Discomfort in clothing
  • Lack of toy play
  • Difficulty shifting from one activity to another (Resistance to change)
  • Slow to respond to pain or injury
  • Resistant to physical affection or cuddling
  • Unable to calm self with pacifier, toys, etc.
  • Poor balance or clumsiness
  • Little or no babbling or vocalizing
  • Easily startled
  • Extremely active (constantly moving)
  • Delays crawling, standing, walking or running

Pre-Schoolers:

  • Difficulty potty training
  • Overreacts or overly sensitive to stimulation (touch, nose, smells, tastes, etc.)
  • Unaware of being touched or bumped
  • Difficulty with fine motor skills (fastening buttons, using crayons, eating with utensils, etc.)
  • Clumsy and awkward (unsure how to move body in relation to space)
  • In constant motion
  • Touches everything around them
  • Gets in other people’s personal space
  • Difficulty making friends
  • Overly aggressive or passive and withdrawn
  • Difficulty with transition
  • Difficult to calm, intense
  • Unexpected temper tantrums or mood changes
  • Seems inappropriately weak, slumps or slouches
  • Speech is difficult to understand
  • Difficulty understanding verbal instructions

School Age:

  • Overly sensitive to stimulation (touch, noise, smells, taste, etc.)
  • Easily distracted in the classroom
  • Fidgety or squirmy, in constant motion
  • Easily overwhelmed in social settings (Recess, playground, classroom, etc.)
  • Slow to perform tasks
  • Difficulty with motor tasks (handwriting, tying shoes, etc.)
  • Clumsy, stumbles often, slouches
  • Craves wrestling and rough housing
  • Slow to learn new activities
  • Difficulty making friends (overly aggressive or passive/withdrawn)
  • Hyper-focuses on one task, difficulty transitioning
  • Confuses similar sounding words (misinterprets questions/requests)
  • Difficulty reading (especially out loud)
  • Stumbles with words, speech lacks fluency, hesitant rhythm

Adolescence & Adulthood:

  • Over-sensitive to environmental stimulation (not liking to be touched)
  • Avoids visually stimulating environments and/or sensitivity to sounds
  • Slow and/or lethargic starting the day
  • Often begins new tasks at one time and leaves many unfinished
  • Uses inappropriate amount of force handling objects
  • Clumsy, bumps into things, unexplained bruises
  • Difficulty learning new motor tasks or sequencing steps of a task
  • Needs physical activities to help maintain focus throughout the day
  • Difficulty staying focused at work or in meetings
  • Requires more clarification than usual, misinterprets questions and requests
  • Difficulty reading, especially out loud
  • Stumbles over words, speech lacks fluency
  • Must read material multiple times to absorb the content
  • Difficulty forming thoughts and ideas in oral presentations

 

Diagnosis of Sensory Processing Disorder

Sensory Diagnosis

How is SPD Diagnosed?
Copyright: designer491 / 123RF Stock Photo

SPD identification typically starts with a screening by an Occupational Therapist.  In my son’s case, his pediatrician referred us to the Occupational Therapist due to his delayed motor skills.  I sat in the lobby and filled out the parent checklist while the therapist evaluated my son.

She was able to tell me that day that he certainly had sensitivities to audio and tactile sensory input.  Of course, she would need to review the results of her evaluation and would be in touch.  Her highly detailed 9 page report on the results confirmed SPD.  We started occupational therapy immediately.

Sometimes the evaluation may warrant additional evaluations.  But often times, the Occupational Therapist is able to make the determination using standardized assessment tools.  These tools often include:

  • Bruinlinks-Oseretsky Test of Motor Proficiency – Second Edition
  • Goal Oriented Assessment of Life Skills (GOAL)
  • Miller Assessment for Preschoolers (MAP)
  • Miller Function and Participation Scales (MFUN)
  • Movement Assessment Battery for Children – Second Edition (Movement ABC-2)
  • Sensory Integration and Praxis Tests (SIPT)

 

SPD Treatment

As with Autism and ADHD, early intervention is important with SPD.  The symptoms of the disorder are not manageable by the child, the parents, the teachers, or anybody else alone.  Children often come across as different, weird, or awkward as a result.

Unfortunately, most children are not taught that everybody is unique and that they shouldn’t judge those that are different.  As a result, children with disabilities such as SPD, Autism, ADHD, etc. tend to be made fun of or negatively labeled as difficult, problem children or badly behaved children.

Sensory Labels

Build a Support System

These negative labels placed on children does cause years of suffering needlessly, exacerbates their already low self-confidence and self-esteem which steers them further and further down the rabbit hole.  Labels such as hyper, weird, aggressive, withdrawn, and different only adds to the child’s feelings of failure from not being able to do what other kids can do effortlessly (such as tying their shoes or riding a bike).

By getting an accurate diagnosis and beginning early intervention, we can provide the correct labeling for their “unusual” behaviors and help to stop the undeserved judging, stereotyping, and punishing of behaviors that they are simply unable to control.

We are able to help these children gain understanding and empathy from people and all around better treatment by giving them a positive label that identifies that the behaviors are due to an undesired and uninvited neurological condition.  It’s not the child’s fault, and it’s not the parent’s fault.

Early intervention also allows treatment to begin early on in life, while the child’s brain is still developing.  This lessons the impact of the disorder on the child later on in life.  It allows both the parents and the child to understand certain behaviors so that they can learn appropriate coping skills and reduce the stress caused by such behaviors.

If you have a child that seems to be displaying one or more of these symptoms, talk to your child’s pediatrician quickly.  Early diagnosis and intervention will help get your baby understand what is happening with them and why they are sensational.  If you have children that don’t have these symptoms, please educate your child on invisible disabilities and teach them to be accepting and understanding of those different than the norm.

Lastly, don’t be so quick to dismiss labels on children.  Remember that there is a huge difference between negative labels and medical labels.  The medical diagnosis that you might consider a label just might be the exact thing a child needs in order to get the help that they deserve.

If you’d like to help me raise some awareness on these “invisible” conditions that are often largely misunderstood, please hit share and get the word out.

Talk soon,

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Is There A Natural Treatment For ADHD?

Yes…and no.  I’m not a doctor, I’m just a mom.  So I don’t want to tell you there is a natural treatment for ADHD and have you run out to try it.  There are many vitamin supplements, and other natural products, out there that can be toxic to children.  I must ask you to please talk to the Pediatrician before trying any home remedies with your children.  The Pediatrician would know best.  I would hate for a baby to get sick.

It’s important to understand that there is no wonder drug or cure all for this disorder.  There are effective ways of treating some of the symptoms.  That’s probably the best you can hope for.  I absolutely dreaded putting my 3 year old on medication drugs to treat the ADHD.  I absolutely hated it.  But I had to ensure that he was going to be able to function in school and before the meds, he wouldn’t have.  Come to find out, his ADHD is secondary to Epilepsy.  And it just so happens that ADHD medications trigger seizures in people with Epilepsy.  So my son is no longer, and never will be again, on ADHD medication.

Are there natural ways to treat some of the symptoms of ADHD?  Yes.  There are two that I’ve found so far.

 

Zinc

PoultryStudies have found that zinc supplements have reportedly improved symptoms related to hyperactivity and impulsivity, but not much in the way of inattentiveness.  Let me be clear, please do not run out and buy Zinc supplements for your child.  Call the doctor if you want to give them any supplements at all.  My recommendation would be to research different foods that are high in Zinc.  Offhand, this would include your red meat, poultry, seafood, dairy, beans, nuts, and whole grains.

 

 

 

 

 

Fish OilFish

Fish Oil has reportedly improved mental skills related to organization and when mixed with primrose oil improves symptoms of hyperactivity and inattentiveness in children.  Naturally, your fish oil is going to come from fish such as trout, sardines, tuna, and salmon.  Again, don’t run out and buy fish oil supplements without talking to the Pediatrician first.

 

 

 

 

St. John’s Wort

St Johns WortIt has been thought that St. John’s Wort also improved symptoms of ADHD, however, studies could not confirm that this is the case.  Studies show that it is ineffective in treating ADHD symptoms.

I’m a strong advocate of trying anything reasonable in relation to coping, life skills, and discipline to help ADHD children get through their days before subjecting them to any medication at all.  Please, please, please do not give your children any supplements or medications without being absolutely certain that it is what they need.

 

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If you have any questions or would like to share your personal experience, please be sure to leave a comment below by clicking on the response link next to my name.  I welcome all feedback and will respond to each comment.