Archive for the ‘sleep deprivation’ Category

Thank you to all of you who weighed in on my last post about our dilemma. When I wrote that post, we had not yet hit the proverbial wall; I didn’t know the behaviors would get even worse. The first night of the medication —only two doses given at full strength —left Nik in a lethargic zombie-like state the next day; the second night —doses of only half strength— accomplished the aim of uninterrupted sleep and a subsiding of the allergy symptoms but left Nik in an even worse state of hypersensitivity and extreme agitation.

We opted to forgo the medication and try to mitigate any allergic response as much as possible using some homeopathic remedies to relieve the symptoms. Now, say what you will about homeopathy —we are all entitled to our opinions —but I have personally experienced times that it works both for me and for Nik. I certainly don’t believe homeopathy —or anything else for that matter— will “cure” my son’s autism (or anything else). What I have seen, though, is that it can ameliorate some specific symptoms of physiological responses and make things a bit better —more manageable, if you will. Such has been the case with the homeopathic antihistamine we’ve used. It’s not perfect and it doesn’t solve the problem by any stretch —Nik’s still showing signs of allergy or extreme sensitivity— but it makes Nik more comfortable and less inclined to claw at his head. And that’s all good.

Anyway, we decided Nik in the aftermath of the Atarax was too close to our experience of Nik in the weaning stages with Lamictal. (You may recall that was an ugly time for us.) Nik continues to show us that he does not handle certain types of medications well at all. No amount of titration or even minimal use will work. He has had adverse reactions to four different seizure meds, paradoxical responses to another anti anxiety med plus Benadryl, and now this. At some point, we have to respect the messages he’s giving us. That point is now.

Last night, Friday, was our second night without the Atarax. Nik slept okay —not as long as I’d have liked but soundly none the less. This morning, the light is back in his eyes and the music in his voice. As I write in the loft, I can hear Nik playing happily in the family room below; he’s actively engaging with his electronic toys, singing along in time with the music and “talking” back when they make the letter sounds. “Huh” he says when the alphabet train says “This is the letter H.” Instant recall where two days ago there was confusion and extreme frustration at his inability to retrieve the information in his brain.

I witnessed the same thing yesterday in his OT session; he couldn’t recall simple things that he’s long ago mastered —this one was matching colors in a sorting activity —and he got so frustrated that he just fell apart. Yet, today he’s able to respond to a disembodied voice from his toy asking him “Where is the letter P?” He recognizes that he has to wait a moment before pressing the right button and he’s actively looking at the letters to find the right one. He even says “guh” for “good” when he knows he’s pressed the right button. He is aware in ways he hasn’t been for a few days.

As for me, well, I suppose I’ll just learn to adjust and sleep less. Meanwhile, the payoff of seeing my son back to his normal rascally self is enough to keep me going. Our quest for information and answers continues.

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In the history of unpalatable decisions, there is (are?) a host of fine examples: Sophie’s Choice, Scylla and Charybdis and Morton’s Fork to name just a few. To this panoply of dilemmas we can now add “Nik’s Nightmare.”

Here it is:

Is it better to have your child wake screaming in pain in the middle of the night each night —ostensibly from as yet unproven or undiagnosed food allergies —and be relatively happy, energetic and otherwise fully functional during the day? You, yourself, on the other hand are in a constant state of siege mentality from lack of sleep and worry that there’s something you might be missing.


Would you rather have your child sleep soundly in a drug-induced state which does, in fact, relieve all symptoms of the apparent food allergy? This same medication makes your child lethargic, drowsy and hyper-irritable while also dulling much of his cognitive functioning during waking hours. The result is a day full of constant struggle and frustration for both you and your child.

Which would you choose and why? Really, I want to know.

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His cries echo in the darkness; the witching hour has begun again. Each night it’s the same routine; he beckons with his plaintive cries as he bangs his head on the side of the crib. Some nights it’s as simple as soothing him with a touch —a gentle rub on his back, a firm pressure over the right side of his head.

Usually, he will settle fairly quickly and hover at the edge of sleep, held there by the warmth of my hand. If I move too soon, the spell is broken and he startles, frantically clutching at my arm, imploring me to stay. Knowing how little he asks of me, I settle in like the sentinel I am, keeping the discomfort at bay with the only weapon I have —my unflinching, consuming love for him.

I enter the room to find Nik sitting, propped up by the side of the crib. His cries sound the same but his rocking —his punching himself as he seesaws back and forth alternately slamming first his forehead then the back of his head against the crib —is different. In the dim glow of the nightlight, I can see the splash of tears on his cheeks, the dark splotches on the sheet where fat, hot, frantic tears have cascaded down in the darkness.

“Mama’s here, baby. Mama’s here. Shhh, it’s ok, lovey. Mommy’s going to make it better.” My throat constricts as I choke back my own hot tears. He needs my strength right now; there will be time for me to cry later. I quickly unzip the crib tent and lower the side, reaching in to pull his little boy form into my arms. He sits with his back against my chest, the lowered wall of the crib between us. I wrap my arms around him and press my head against his.

His head continues to rock forward and back as if he’s seeking some sort of release or some sensory input that will change whatever uncomfortable sensations he is having. I feel the heaviness of his skull as it thumps against my chest. I whisper soft words to him, hoping they bring him ease. The rocking begins to slow as I gently start to sway side to side with him. He squeezes his delicate hands together —“Help me, Mama,” they say to me. It’s a gesture we’ve recently begun to use when he asks for help during play as well. I am momentarily stunned at his presence of mind and ability to retrieve this particular gesture just now.

“Show Mama what hurts, baby. Let me help you,” I croon softly against his hair. My own fat, hot, anxious tears flow now; I cannot hold them in. He puts my hand on his forehead and presses. Instinctively, I begin to rub back and forth in the same gentle motion I used when he was just a slip of a scrap of a baby in the hospital. I would sit for hours, gently stroking across his forehead —willing him to feel the love and strength in my fingertips. Nik sighs and settles against me, his wiry form relaxing in my embrace, head nodding forward —toward the precipice of sleep.

These are the moments I wish he were a tiny baby again so I could scoop him into my arms and shelter him against my bosom. I’d breathe in the softness of his skin and the gold in his hair. My whole body would drink him in and fill him with healing light and strength. I would rock him into restful ease. Instead, I can only will all those things to flow through my arms and my fingertips, hoping he feels it just the same.

Nik slumps against my arm. As I gently lay him down, he startles; reflexively, he reaches for my hand. “Shh, I’m right here, angel. Mama’s right here. I won’t leave yet, I promise.” He curls his long limbs into a tight little ball —one hand tucked between his knees and the other laying upturned next to his cheek. He accepts my hand into his soft, spindly grasp. My thumb rests against his cheek as he snuffles and begins to settle. I can feel the moment when he slips gently over the edge of consciousness.

His deep, even breaths tell me he is at peace —for now. I gently lift the side of the crib and secure the tent before returning to the warmth of my bed. Settling in next to my slumbering husband, I am unable to go back to sleep right away. One thought keeps echoing in my brain: “He asks so little.”

All he wants is the simple, soothing touch of my hand in the fitful, frightful darkness. I want to give him more; I want to make the need go away. I need to make the need go away.

I cannot rest until I do.


Wipe those tears away from your eyes
Just take my hand you don’t have to cry it’ll be alright
I’ll make it alright
Don’t let the world get you down
Reach for the love that’s all around
It’ll be alright baby we’ll make it alright

I’ll pick you up when you’re feeling down
I’ll put your feet back on solid ground
I’ll pick you up and I’ll make you strong
I’ll make you feel like you still belong
Cause it’s alright, yeah it’s alright let me
make it alright, make it alright

Stay with me tonight, stay with me tonight
Sometimes the words well their just not enough
Afraid of feeling and in need of love
To make it alright, baby, I’ll make it alright
Where will you run to where will you hide
I know the pain comes from deep down inside but
it’ll be alright baby we’ll make it alright Baby
Let me make it alright, Make it alright
Let me make it alright, Make it alright

Stay with me tonight, stay with me tonight
It’s alright, yeah it’s alright
It’s alright, yeah it’s alright
It’s alright, Stay with me tonight
I’ll pick you up when you’re feeling down
I’ll put your feet back on solid ground
I’ll pick you up and I’ll make you strong
I’ll make you feel like you still belong

Cause it’s alright, yeah it’s alright let me
make it alright, make it alright
Stay with me tonight, stay with me tonight

It’s alright, yeah it’s alright
It’s alright, yeah it’s alright
It’s alright, Stay with me tonight
It’s alright, yeah it’s alright
It’s alright, yeah it’s alright
It’s alright, Stay with me tonight.

Alright by Reamonn

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Well you know those times
When you feel like there’s a sign there on your back
Say’s I don’t mind if ya kick me
Seems like everybody has
Things go from bad to worse
You’d think they can’t get worse than that
And then they do

You step off the straight and narrow
And you don’t know where you are
Use the needle of your compass
To sew up your broken heart
Ask directions from a genie
In a bottle of Jim Beam
And she lies to You
That’s when you learn the truth

If you’re going through hell
Keep on going, don’t slow down
If you’re scared, don’t show it
You might get out
Before the devil even knows you’re there

Well I been deep down in that darkness
I been down to my last match
Felt a hundred different demons
Breathing fire down my back
And I knew that if I stumbled
I’d fall right into the trap that they were laying, yeah

But the good news
Is there’s angels everywhere out on the street
Holding out a hand to pull you back upon your feet
The ones that you been dragging for so long
You’re on your knees
You might as well be praying
Guess what I’m saying

If you’re going through hell
Keep on going, don’t slow down
If you’re scared, don’t show it
You might get out
Before the devil even knows you’re there

Yeah, If you’re going through hell
Keep on moving, Face that fire
Walk right through it
You might get out
Before the devil even knows you’re there

“If You’re Going Through Hell” by Rodney Atkins

Twenty-six months since Nik took his first seizure medication.
Two years since his once voracious appetite and willingness to eat withered away to nothing. Nothing.
Twenty-two months since my child slept peacefully through the night.
Twenty months of piercing, debilitating pains in his head, ears, eyes, jaw, and stomach.
Twenty months of hitting his head so hard he looked like a prize fighter on the losing end of the bout some mornings.
Twenty months going from doctor to doctor —in multiple disciplines of medicine —and finding no answers and no solace.
Six months without seizures.
Fourteen weeks; the schedule the doctor suggested we follow to wean Nik off the Lamictal.
Twenty-five days since we began the weaning process.
One day a week in which Niksdad is available to help out due to his school and work schedule.
Three and a half hours; the most contiguous hours of sleep I’ve had since mid-August.
Zero inches until I reach the end of my emotional rope.
Five minutes; the amount of time it took for Niksdad and me to decide we’d rather have a short, hot trip through the center of Hell than a long, slow burn on its outskirts.

Six days until Nik takes his last dose.

I’ll try to send a postcard, but if you don’t hear from me for a while it’s only because there’s no Internet and no wireless in Hell. But we finally found the road out of town.

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It’s been a beastly week around here in terms of Nik’s Lamictal withdrawal. As the dose tapers downward and the cognitive abilities soar upward —well, it’s a delicate balance and something’s got to give, right? Nik’s decided sleep is the thing most easily dispensed with; only trouble is he didn’t ask my opinion on the matter. I am firmly in the camp of those who feel that sleep is non-negotiable. Unfortunately for me, he’s a master negotiator.

I’ve been tired and whiny; my body is out of kilter and my moods have been swinging like Foucault’s Pendulum in a storm of magnetic particles. Niksdad has been buried in schoolwork, clinicals, and paying work; on his one day off he is ensconced in books and —much as I love him dearly —utterly useless in providing any sort of break for me.

In a desperate attempt to minimize some of the middle-of-the-night energy surges and sensations which have been waking Nik between one and three each morning and lasting for several hours —or which simply result in starting our day at those insanely early hours— we’ve shifted Nik’s med schedule a bit. Unfortunately, it seems to have a strong impact on either the middle of the night or bedtime; a bit of a watered down Sophie’s Choice, if you will.

Today, with the shift in the schedule and the subsequent slight (and I mean ever so slight) overlap in doses, Nik’s broken out into THE RASH again. Good gracious! It’s getting to the point that I’d be just as happy to stop the meds cold turkey and tough it out for a week or so. At the rate we’re going —given the upsurge of undesirable symptoms which accompany each dose adjustment —this hell could last another twelve weeks. Unless something seriously changes, this mama isn’t going to make it that far.

Of course, the flip side to all of this is the sudden increase in Nik’s appetite, social interactions, blossoming personality, and expressive language. He’s taken to drinking Danimals yogurt drinks in lieu of a snack via his feeding tube; he’s even allowed me to feed him Greek-style yogurt (which is quite thick, like sour cream) with cherry puree mixed in —and let the spoon enter his mouth instead of just licking it. He’s learning to identify colors and shapes and sort things (some). He’s requested toys and his shoes completely spontaneously —and in context; he’s beginning to master the ability to make choices; he expresses “No!” —perhaps not so articulately as I’d like but very clearly; he’s helping to clean up his toys, taking turns, and learning to wait. It seem as if things are happening so rapidly that it’s hard for me to keep up and remember all the changes!

But the greatest gift for me in watching Nik’s rapid development is his sense of humor; he has an apparent love of the absurd. I’d try to explain but I think this will illustrate it better than my words could ever do:

I mean, who knew the letter E could be so darned funny??

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Well, it was bound to happen and there are those who will say I jinxed myself…

Nik was awake from midnight until two this morning. PLAYING.

It wasn’t exactly the blissful night’s sleep I envisioned when I wrote this post. Still, it wasn’t his usual thrashing, kicking, screaming middle-of-the-night melodrama either. And I didn’t even have to sit with him! I simply promised him I’d be here in the morning and he let me go —with something akin to ease.

I’d call that progress in a strange sort of way. While it was an amusing two hours —replete with serenades of laughter, clapping, and songs —it was nice to finally drift off to sleep listening to the quiet stillness of the house.

I have to wonder how much of last night’s play-fest was driven by the fact that we never got out of the house due to the weather; Nik didn’t get nearly enough gross motor activity yesterday. The sun is shining today and I’m going to try to get Nik to the park at some point to burn off some of his energy.

But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

Excerpt from “Stopping By Woods On A Snowy Evening” ~ Robert Frost

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…but it seems like Nik has hit another plateau with the decrease of his Lamictal. The ear infection is under control —last dose of antibiotic was tonight —and we’ve been giving him acidophilus to help his tummy cope with the the effects of the antibiotics.

Last night at bed time, I promised Nik I would be here when he woke; he went to sleep without any fuss —and slept twelve and a half hours straight through the night! Let’s see if he does it again tonight! Tonight’s bedtime was a replay of last night’s smooth operation and he was out cold by 7:30 p.m.

Keeping my fingers crossed!

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Damn Murphy anyway. I should have known better than to post all that wonderful “spring is coming, la, la, la” crap the other day. I might as well have stood in the middle of Fifth Avenue just daring the Manhattan cabbies to hit me as I crossed against the light.

Whatever it is that goes on in Nik’s head —and I mean that entirely literally —to cause such pain and distress is on the rise again. It’s been an ugly couple of days around here. Nik’s been Jekyll and Hyde, the master of the mixed message, contrarian extraordinaire. He wants me; he doesn’t want me. He clings to me; he pushes me away but gets upset when I leave his side. It’s no longer sweet and endearing. We’ve far surpassed bonding and moved right into the stalker stage.

And the pain. The physical pain that washes over him unexpectedly. While he’s playing or dining. While he’s watching Mary Poppins. It’s as if someone has stuck him in the eye with a hot poker. And Nik seems to want to blame it on someone —anyone —and I seem to be conveniently at hand. I can’t say I blame him, really. I mean, I’d like to be able to blame someone or something for the topsy-turvy days, the disjointed nights, and the bruises and tears. If I am feeling this way without the physical sensations Nik is experiencing, well, I can only imagine how he feels. Though, last night I did go to bed early with a migraine; I’ve not had those in nearly a year.

We’re back to the daily Advil habit to mitigate the worst of the pain —or at least dull it to a tolerable level. I hate when we have to resort to that, though; it really starts to wear on his stomach. Today he’s been clutching at his belly periodically. It makes me wonder if it’s the Advil or if it’s new symptom being added to the mystery ailment.

The irony is that Nik is making such great strides in so many areas; I just hate that it comes wrapped in such prickly packaging.

If I try to be really objective, I might be able to see that, perhaps, Nik’s sudden clingy, bossy, come-here-go-away behavior is an attempt at controlling something that feels out of control to him. A small measure of comfort when he feels ill at ease, perhaps? Maybe it is those things and maybe it is not. I wish he could tell me what hurts, what he feels and hears. What he needs.

Tomorrow morning Niksdad and I get the dubious pleasure of taking Nik to the sleep lab at our neurologist’s office; at 7:30 tomorrow Nik will be hooked up for a 24 to 48 hour ambulatory EEG. Thank goodness Niksdad does not have school tomorrow and will not only be around to help me in the morning, but will give me an opportunity to get out of the house for a bit by myself. The last time we did an ambulatory EEG, Nik was not walking; in fact, he had just learned to sit up a month before. I can’t help but wonder how Nik will respond to all the electrodes on his head and lugging around the backpack-recorder.

If there is a patron saint of parental sanity, please, please pray for me? For us?

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Translation for the pictorially challenged: Nik has both an ear infection and an infection at his g-tube site, and is on antibiotics which are creating a highly undesirable gastric effect resulting in extra work for Mommy who hasn’t slept much lately and has to resort to run-on sentences!

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Because I don’t believe it is possible to live in a constant state of despair or euphoria —whether by Divine design or the laws of physics, nature, or what have you — I am pleased to report that we had a good night last night! Nik slept through the night —mostly. He really only stirred a few times and I didn’t actually have to get out of bed to go to him. Wow.

I absolutely attribute that progress to the power of prayer and positive thinking which has flowed forth from all of you in the past few days. Yesterday wasn’t any better than previous days and yet Nik slept like a rock last night. I even took some time yesterday afternoon, while the rest of the household was sleeping (Nik and both cats —all nestled in their respective places) to do something utterly mundane and completely normal. I baked cookies! Did I have any special occasion which required them? No. Did I want to eat them? Well, duh, of course —but that wasn’t my motivation. I just needed to feel normal for a while.

This is close to the time of year when I start baking and creating goodies to send to the army of doctors, nurses, therapists and social workers back in California and here in Delaware who helped pull our family through those many dark months after Nik was born and who have so impacted our lives since then. Such a simple thing really —the baking and making of goodies —and yet it is the only thing I feel I can do that is from my heart and my hands to say “thank you” no matter that it seems trivial and inadequate. But it’s too soon to do that just yet.

Huh, it occurs to me right now as I write this, maybe I made those cookies for YOU! My way of saying thank you for holding our family in your hearts as we struggle to find answers for Nikolas. Um, I only made a few dozen so you may have to share…


While the “children” were nestled “all snug in their beds,” I did take some time yesterday to do more research. Somehow, I stumbled across some information that just clicked. It doesn’t exactly address the root cause but it puts all of Nik’s symptoms into a context which makes so much sense and points to some possible avenues for further exploration. I am going to talk to Dr. Mary about it at some point today. She called Friday night and we are going to start scheduling some testing for Nik while she waits to get something scheduled with the diagnostic group.

It’s not answers and resolution —yet. But I feel more hopeful and so much less alone in this than I have in a very long time. Thank you for your kind words of support, your prayers, your personal emails. They really do make a difference.

Today, my heart feels lighter. I’m going to revel in the feeling and use it to continue the forward momentum.
…or maybe just revel.

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