Tag Archives: Pediatrician

Catching ZZZs

24 Nov

I don’t know about you, but I am an absolute bear if I don’t get enough sleep, or even worse – if my sleep is interrupted – Beware!  My husband learned this the hard way early on in our relationship, when I lashed out at him like some evil, snaked-tressed Medusa after he woke me up one too many times during a long, late-night car ride to Washington, DC.  I shall never forget the look of astonishment, fear and horror on his face as he witnessed his beloved turn into a raging lunatic in the night.  (As we were still just dating at that point, I’m surprised our couple-hood lived to see the light of day!  It is truly a testament to his equanimity…)

It’s no surprise really…We are bombarded daily with articles and news reports about how vital sleep is for mood, as well as for health, learning and development.  So, we all agree that sleep is a great thing, but still many of us are unable to achieve that minimum daily requirement of zzz’s.  And children are no exception.

Right from birth, my son Gregory had difficulty settling himself.  Whereas his older brother Daniel had slept for four hour stretches his very first day home from the hospital, as a newborn Gregory woke up and needed to be cuddled, soothed and/or fed every hour.  It was exhausting (and helped produce some repeat performances of Medusa-on-the Rampage, BTW), but eventually we got him to sleep for as much as three hours at a time.

When Greg was 2 ½, we moved him out of the nursery, into his own room and into a ‘Big Boy Bed’.  (His sister Sarah was on the way and we needed the Baby’s Room for her….)  Gregory loved his new room, decorated with cars and trucks, but the transition was not an easy one for him.  (and in hindsight, we could have handled the change much better…live and learn….)  In any case, Greg continued to have great difficulty settling down for the night.  He would happily get ready for bed and eagerly pick out a book for Mom or Dad to read to him.  But after being tucked in and kissed good night, he would toss and turn for hours.

When Barry and I would head to bed several hours later, Gregory was often still awake, lying in his “Big Boy Bed” muttering to himself, unable to let go of the world and fall into peaceful slumber.  And when he did eventually sleep, it was anything but peaceful, fraught with restless dreams and late-night stirrings. He would awake crying frequently and I would repeatedly have to go in to settle him.

How do I know all this?  Well, Gregory’s room is right next to the Master Bedroom.  And that adorable red, bead-board “Big Boy Bed” that I had purchased to go with his charmingly decorated new bedroom, squeaked and creaked with – every – single – movement!    No, I am not exaggerating.  (Boy, did I have buyer’s remorse over that purchase!)  I am a very light sleeper, and I heard Greg’s bed ‘musical’ constantly through the night – night, after night, after night…

We tried many things to try to improve his comfort and thereby hopefully his sleep.  We put up side rails; we added a night-light; we surrounded him with pillows and stuffed animals; we put on sleepy ‘mood’ music; we tried a wave sound machine; we read ‘sleepy’ books to him; we even had his big brother sleep with him…All to no avail.  He continued to be a very restless, problem sleeper – and time went on…

Melatonin Supplementation

Shortly after figuring out that Gregory has Asperger’s Syndrome, I read that many people with AS suffer with these same sleep issues.  Apparently, children on the spectrum typically experience circadian rhythm dysfunction and abnormally low levels of melatonin.

I began to do research and came across a study in the Journal of Clinical Sleep Medicine on the use of the natural hormone melatonin to improve sleep of children with autism.  This study was a 4-week rigorously scientific trial, where either 3 mg of melatonin or a placebo was given to 18 children with ASD.  The study supported the efficacy of melatonin treatment for sleep problems, with minimal, if any, side effects.  Now this sounded promising!

I did additional research, OK’d it with our pediatrician and then set out on my own subjective clinical trial.  I decided to start with 1 mg of melatonin (as opposed to the 3 mg in the study), to try to find the minimal effective dosage.  I also decided to include my older son Daniel in the test, because due to his ADHD he too, has difficulty falling to sleep.  (Unlike Gregory however, Daniel sleeps like a log once he finally does fall asleep.  One time a carpenter was banging away, installing crown molding right outside his bedroom, and Daniel slept right through it all….)

At bedtime, I gave both boys 1 mg of melatonin and then observed the results.  On the very first night – success!  Greg and Dan both fell asleep within about 20 minutes, which was a dramatic improvement.  But even better, Gregory experienced a much more restful sleep.  He didn’t toss and turn, or wake up nearly as often throughout the night.  The next morning, both boys woke up normally, and did not show any signs of grogginess or other ill effects.  I was ecstatic!  Add one to the arsenal of sleep aids!

Massage Therapy

About this same time, I was speaking with a behavioral therapist who uses both music and massage therapies in working with autistic children.  She showed me some basic massage techniques to help reduce stress. (For example:  Press the palm of your one hand firmly against the person’s chest, while your other hand slowly and firmly slides down his back, from between the shoulders blades to the waist.)   We tested it out on Gregory…He loved it!  It seemed to calm and relax him, and I could actually see his shoulders dropping away from ear lobes as he de-stressed.  We began using therapeutic massage anytime Gregory started getting upset or overwhelmed and it significantly helped him to regroup and manage his behavior.

Seeing how well massage worked during stressful times, I decided to try it at Greg’s bedtime as well.  As part of his nightly routine, I would give him a back rub – using long strokes and firm pressure (not too hard or too light, which were both uncomfortable to him.)  As I massaged, we would talk a bit about his day and what the plans were for tomorrow.  Stroking his back, I would quietly ask him if he could feel all that TLC (which I had to define for him as ‘Tender Loving Care’) going from me to him.  He loved it – and so did I!  Best of all, it worked to improve his sleep.  As the tension melted away from his body through my loving touch, Gregory was able to go to sleep and stay asleep so much easier.  Add another trick to the arsenal!

Today, that bedtime massage is a well-loved ritual that we do each night – with all three of my kids!  Greg will actually come and ask me for his ‘special massage’ and it has become a very special bonding time.

Although I didn’t use a scientific approach or control variables in my ‘studies’, I believe that melatonin and massage both have had very favorable results in improving Gregory’s sleep patterns.  Together, they have helped him fall asleep more quickly and stay asleep longer, enabling him to enjoy a more restful, recuperative night.

After a few months, I stopped giving the melatonin at bedtime, to test the supplement’s true impact….and to my surprise, the benefits remained!  Somehow the improved sleep patterns of the previous few months had retrained Greg’s mind/body to improve his circadian rhythm function.  He had learned how to settle himself and was now relaxed enough to stay asleep.  I couldn’t be happier with the results and these days, we only rely on melatonin periodically, such as during travel or when sleep eludes him for some reason.  Even on an ad hoc basis, melatonin continues to work its wonders.

As a result of his improved sleep, Greg’s daytime moods and resiliency have improved dramatically too.  He is less stressed and is able to cope much better with the world around him.  And I’m happy to say – so am I!  I too, am sleeping better and Mrs. Medusa rarely makes an appearance these days – at least not due to lack of sleep!  🙂

 

Here’s a link to another recent study supporting the use of melatonin for children with autism:   http://www.autismspeaks.org/science/science-news/more-evidence-melatonin-eases-autism-associated-insomnia?utm_source=social-media&utm_medium=E-speaks&utm_campaign=121611

 

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Date Night Diagnosis

10 Aug

I’ll start by saying that I’m no expert on autism and that there are some really great resources out there – on the internet, in book stores, at seminars and colleges, etc. with insights and knowledge provided by experienced and credentialed professionals and documented studies.  With 20-20 hindsight, I wish that I had known to investigate these sources a whole lot earlier in my son’s life.  It would have saved us thousands of dollars, multitudes of questions, years of anguish…

In any case, I didn’t know any better, so when my previously loving 2-year-old son Gregory started ‘rejecting’ me and waking up screaming in terror/anger/frustration in the middle of the night, I was lost for an explanation.  I tried to reach him, to calm him, but he shut me out; he wouldn’t let me touch him.  I did what my mother-instinct told me to do…Night after night, I grabbed hold of him and held him firmly against me (fighting, screaming and kicking the whole time), talking quietly into his ear until eventually he ran out of steam and quieted.  Of course, Greg couldn’t tell me what was wrong, and even when he eventually lay his tear-stained face back down on his pillow, he wouldn’t acknowledge me.

I cried myself to sleep too…my poor baby.  We had never experienced anything like this with his older brother, Daniel.  What was so wrong?  What could I do for him?  Why was he in so much pain? 

Having just given birth to our third child, our lovely girl Sarah, I suspected that Gregory might be reacting to her arrival with jealousy.  Perhaps he felt replaced or betrayed by my attention to this new loud, smelly ‘thing’.  But if so, what could I do about it?  So I started reading books about sibling rivalry.

First, we tried to make sure that Greg received lots of one-on-one attention – from both his parents.  Then, I tried talking to him about the problem and trying to give him names for the feelings that he was experiencing – encouraging him to express himself.  But he still wouldn’t or couldn’t say.  Then, we tried to involve him in helping us care for his new baby sister, but he had absolutely no interest.  To him, she didn’t exist:  when he drew pictures of his family, it was always just Mom, Dad, Daniel and Gregory – no Sarah!  When someone talked to him about Baby Sarah, he just turned and walked away. 

And Greg became increasingly solitary, smiling rarely, interacting less.  His body-language changed, to where he appeared very tense, with his shoulders hiked up to his earlobes, poised on his tip-toes, with his hands clenched tightly.  If someone or thing surprised him (even with a slight touch on the shoulder), he reacted aggressively, as if trying to protect himself from attack.  And that is indeed, how he appeared – as if he was about to be accosted at any time – always on high alert.  It saddened me to see my little boy so tense and nervous, unable to relax – even in his sleep.

When those efforts proved ineffective, I spoke with the pediatrician.  Now, don’t get me wrong, we LOVE our pediatrician, and one of the reasons for this is that he doesn’t over-react to nervous mother worries.  So when I explained my concerns, the doctor reviewed Greg’s growth (which was off the charts in both height and weight ever since birth), performed the usual physical and developmental assessments and determined that it was ‘just a phase’ – “He’s doing fine.”  I tried to be reassured by this knowledgeable professional’s words, but my instincts told me it was more than ‘just a phase’.

So, life went on, but Gregory was not ‘just fine’.  We continued to struggle with our quirky boy, trying to mold his good behaviors and discipline his bad ones.  I attempted play dates, in the vain hopes of helping him develop friendships.  I signed him up for activities, hoping that Greg would ‘find himself’.  I took him to a pediatric neurologist and was told, “No, he doesn’t have autism – He makes good eye contact.  He has Tourette’s Syndrome.”  We even had him wear orthotic boots to bed at night for two years, on the recommendation of an orthopedic physician, to cure the presumed tight tendons that were causing him to toe-walk years past the toddler stage. While all well-intentioned, none of it worked.  Gregory continued to be an unhappy, tense, withdrawn boy.

Once Greg hit Kindergarten, all hell broke loose.  Our older son, Daniel, had transitioned well into elementary school.  And the PreK teachers had said that Gregory was ready for Kindergarten, so we were totally blind-sided when things went so wrong right from the start.  On the second day of Kindergarten, I received a phone call from the teacher that Greg had been sent to the principal….WHAT????  I had NEVER been sent to the principal in my entire life!  My little guy didn’t even know that being sent to the principal was a bad thing!  What was going on???  Unfortunately, it went downhill from there…

In hindsight, it was not just Gregory’s behaviors that were at fault.  The teacher didn’t handle things as well as she might have either, and being the professional, I believe the greater responsibility lay with her.  In any case, the two of them did not mesh well at all, and it became a very rocky relationship, to the point where Greg didn’t want to go to school anymore.  His verbal and motor tics increased dramatically in response to the stress.  He felt his teacher’s disapproval, our disappointment, and his own frustration at being unable to do things ‘right’.  It was a daily struggle, with weekly meetings, and ‘talks’ with Gregory.  Luckily for him, his teacher went out on maternity leave in January and he and the new teacher got along much better.  I don’t know what specifically changed, but the new, young teacher must have just ‘got’ Greg and accepted him in all his quirky behaviors.  He still had melt-downs at school from time to time, but overall, he did much better and we were relieved that he might be moving out of that ‘stage’.

First and Second grades progressed slightly better, primarily because the teachers were wonderfully accepting of Gregory’s odd behaviors and needs.  The first half of each school year was fraught with melt-downs and running-away episodes, but by January, Greg would settle in and be more comfortable for the rest of the school year.  And we would think, yeah! He might be moving out of that ‘stage’…  until the next school year began and the cycle repeated itself.

In Third Grade, the year started off with the usual poor transition, with melt-down episodes of hiding under desks, running away from school, tearing up school work, and disappearing into stairwells.  Gregory was a desperately unhappy child, saying that “No one understands me.” And “I’m not like other kids.”  His tics were rampant, he was barely sleeping at night and he was always by himself.  I knew that something had to be done, but still didn’t know in which direction to turn.  This time, I made an appointment with the Head of Pediatric Development at St. Joseph’s Children’s Hospital…I couldn’t get the appointment for another 6 months, but I needed to do something and didn’t know where else to go.

And then, the ‘Date Night Epiphany’ happened.  For a number of years, my husband and I would schedule Date Nights every few weeks, for just the two of us to go out together and talk.  (This has served us well throughout the years – I highly recommend it!)  In any case, that particular night, Barry had to take a lengthy phone call from his boss in the middle of our Date Night, just as we were finishing dinner.  Knowing how much I love book stores, he knew that I could happily browse for hours and therefore not get annoyed by the interrupted Date Night, freeing him to take the call without guilt. 

So, to Barnes and Noble we went, where I was drawn to the section on Mental Health, still trying to put my finger on Gregory’s strange set of issues.  Bi-Polar – no; ADHD – no; Oppositional-Defiant Disorder – no.    And then the epiphany:  I picked up the next book on the shelf – Tony Attwood’s The Complete Guide to Asperger’s Syndrome[1].  Although I had a vague notion of what autism was, I had only heard the term Asperger’s Syndrome a few times and had no clue what it was.  So I turned to the page listing AS symptoms – and there he was, in all his quirky glory!!!!  I couldn’t believe my eyes…out of the 20 symptoms listed, Gregory matched up with almost all of them.  I was overjoyed – not that he had AS, but that now I had a direction to go….understanding and hopefully treatment was finally on its way!    I grabbed every book I could find on the subject and virtually ran to find Barry (having just completed his phone call, luckily) to present him with the joyous news!  Our son has Aspergers!!!

All that Friday night and the rest of the weekend, I read…and read….and read.  Light bulbs were going off in my head constantly as Gregory’s behaviors started to fall into place and make sense.   I hugged him and told him how much I loved him – for the first time with an understanding of all that he had been struggling with.  My brave boy had tackled so much on his own, trying his best to cope in his own way, to circumstances and situations that were so difficult for him…Sometimes sadly, even when the well-meaning actions of his parents and teachers exacerbated the problems for him.

But now, things would be different.  I knew what we were dealing with and I was ready to educate myself about my ‘opponent’.   I still went ahead and eventually visited with a Pediatric Neurologist for an official, unbiased medical diagnosis, but I was already convinced that this was it.  Time to strap on the armor….  Look out world – I’m a Mama with a Mission!


[1] Tony Attwood, The Complete Guide to Asperger’s Syndrome (Jessica Kingsley Publishers, 2007).

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