Dear Dr. Sharon Thetford (a name we won’t forget),
We wanted to take the opportunity to properly thank you for changing the trajectory of our 2 year old son’s life. You also re-established a family joy that once seemed unattainable. Let’s take a proverbial trip down memory lane: In December 2012, we took our son Keller to an overnight sleep study which confirmed he was suffering from a complex sleep disorder that included night-terrors, nightmares and night-wakings. These nightly episodes (up to 8 a night) wrecked havoc on him, his sister, and our family as a whole. I, his mother, could not console him in any way during the night or even in the morning and throughout much of the day. He was numb to me and seemingly agitated with just about everything.
Revelations of a Sleep Study
It had been almost a year that I couldn’t even put him down to bed, shattering my motherly dreams of bedtime stories and sweet kisses. Dad had to lay him down every night and then we put on our armor to survive another night as best we could. The sleep clinic suggested anti-anxiety medication along with prescription sleep meds. They mentioned ADHD, opposition defiance disorder and other illnesses that were likely in our future. At 2 years old and barely 20 lbs, we weren’t ready to medicate without exhausting other options first. Lucky for us, we happen to personally know a world renown ADHD doctor who told us Keller was simply too young for any major diagnosis yet. He sent us some research on night terrors that motivated us to continue searching for a recovery path. Our pediatrician Joseph A Cannizzaro, MD told us we should meet with a psychologist named Dr. Sharon Thetford to see if something called ‘neurofeedback’ would work.
We came to you in January 2013 a very broken and hopeless family. Our insurmountable goals were this:
- Get Keller to sleep at least 8 hour straight (was averaging 1.5 hrs in between night wakings)
- Get Keller to sleep to at least 6 am (his average final wake up for the day was 4:30am)
- Get Keller to respond to mom (by this point, he wasn’t allowing mom to change/feed/dress him – only wanted dad)
- Bonus goals: increase his frustration tolerance, decrease his tantrums and find tools to deal with his behavioral challenges
An Assessment That Changed Our Treatment Course
Your assessment concluded that Keller did not hate his mommy nor was he purposefully evoking his night sessions or difficult disposition. It wasn’t bad parenting or a lack of simple bedtime firmness. On the contrary, a brain map by your colleague Alex revealed what you suspected: he had dis-regulation in the left frontal lobe that could be restored through a noninvasive, non medicated approach: neurofeedback.
Inconvenient? Yes, terribly so. It would require 40 sessions 3 days a week. Expensive? Yes, it wasn’t covered by insurance and cost far more than an office visit. Worth it? With every fiber of my being let me shout and scream Yes! We can say that in hindsight, but the decision to make the investment didn’t come without a lot of deliberation and sacrifice.
Hanging by a Thread
Let me be honest, watching Keller have the first few sessions seemed a bit hokey. How could something like this help my son? If you saw the severity of his night terrors, then this would seem an odd treatment. I remember so vividly session 9 – 3 straight weeks of session after session – with no results that I could see. I threw in the towel and lost hope. I should mention that the actual night terrors were gone by this point, but the rage, nightmares and night wakings were still occurring and it was hard to see a silver lining at that point. For anyone going through this – reading this blog – I’d be remiss not to share the highs and lows. The low came when I sent an email to you that said, “It’s not working. I give up. We’re doomed. Keller is destined for a lifetime of this and I don’t think our family unit can survive.” People in the throws of this type of situation can attest to what it does to the family. I was ready to reconsider medication or anything else for that matter.
You, Dr. T., did not give up. You were steadfast in your commitment to heal our son. I also praise Jesus that my husband was able to carry the torch when I was losing steam. If there was a string we were hanging on to, he was holding one end. Then a few weeks later, it would be my turn to press on to take the string.
Fast Forward to Session 10
That night Keller slept for 7 hours straight; it was our first taste of true hope. You were very good about setting our expectations. From session 11-35, it was two steps forward, 1 step back. We’d chip away at our goals steadily. We went days on end of a full night’s sleep and then regress back. Again, you were steadfast. At session 35, when it seemed like the change just wouldn’t “lock”, we became doubtful again. Though we were light years from our starting point, it still seemed like we had to have a weekly session to ensure it would stick. How could 5 more sessions make all the difference? Well, it did. Just like you said. We knew there were no guarantees – and you never promised one – but you said there was no reason for us not to remain hopeful. I also found it really astonishing that you encouraged us to not settle for ‘just better than it was’. You said we should drive toward complete recovery and should expect more of our son that partial settlement.
Keller goes to bed every night around 8:30 pm without much fuss; just a wee bit of normal toddler negotiation. He wakes up between 6-6:30 am by coming into our room and proclaiming, “I’m awake. The sunshine is up. I want chocolate milk.” This is a stark contrast from waking up at 4:30 am screaming at the top of his lungs. As for mommy rejection….well, that’s just a thing of the past. I’m now instructed to watch Mickey Mouse every morning with him while we hide under the blanky together.
We’ve since taken your parenting class and have more confidence than ever. The anxiety that once paralyzed me with my son is completely gone. Instead, I fill my days enjoying the family I was blessed with. Will Keller have ADHD in the future? Who knows. If he does, I now know that our family is strong enough to spring into action and seek the proper help (whatever that may be) for the proper diagnosis.
If you ever find yourself weeks on end as a Psychologist without any patient breakthroughs, please remember our son Keller. Let him be a reminder why you’ve dedicated your life to healing people from debilitating afflictions. In the words of Keller that you love so much….”Dr. T, we’re all done today.”
Sincerely, The Hathaways
Here’s a video of our son Keller today (June 2013)