Posts Tagged ‘health’

If you ever doubt that nonverbal, seemingly “severely autistic” people don’t know what’s going on around them, I’d like to offer this for your consideration:

We saw a particular doctor, a neurosurgeon, several months ago to evaluate Nik’s “mildly tethered” spinal cord. During the appointment, Nik was very focused on the doctor’s stethoscope since he is enamored of all things medical. While Nik played, we discussed his symptoms with the doctor and plotted next steps including ruling out some things. We have not seen this doctor again (yet) since the initial visit.

Lately, Nik’s been having an upsurge of similar symptoms including intractable head pains. He’s also started using his device to ask to see this particular doctor. I, stupidly, assumed he was just randomly naming one of his many doctors.

Until this morning.

I asked Nik, after he had said this doctor’s name a few times, “What do you want the doctor to do?” Nik started answering with his self-scripted litany of the processes involved in taking vitals, etc. We see enough doctors that Nik not only knows the routine but has incorporated it into his play routines. It’s only recently that we realized he only engages in this routine when he feels “off” or needs to soothe himself somehow. Nik became entrenched in this line of pretend play and I didn’t know what to make of it. What was he trying to tell me.

He asked for the doctor by name yet again. Knowing how he might respond if I asked the question the same way as before, I changed my approach, asking him what he wanted the doctor to FIX. His reply blew me away,

“Fix head feel hurt.”

Always, ALWAYS presume competence and understanding. Even when you can’t put the pieces together, they are there. They have meaning even in their seeming randomness. Never give up.

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You may have noticed that my writing has fallen off here. Quite a bit. Yeah, I know, I know. I don’t need to beat myself up about it, it’s my blog, blah, blah, blah.  The truth is, I haven’t been writing because I haven’t known how—or what—to share about the changes happening with my son. The words are jammed up inside my head, warring with the feelings inside my heart. I have discarded multiple drafts in an effort to find the words I need. I wrestle with what I want to say and how much I feel comfortable sharing. I still don’t have the answer; I am outside my comfort zone.

The irony is not lost on me.  Ever the consummate over-sharer— not afraid to tell my story to anyone who will listen, I have struggled with what to reveal. I’ve been grappling with finding my own truth and having to confront my own biases all while trying to find a new equilibrium. I have been forced to examine and to reframe my vision for the life I thought we would have.

The life I thought he would have.

It’s very much a work in progress as we continue to redefine, reshape and work our way through the morass of emotions and information.


When my son was born extremely prematurely, he was substantially smaller than his gestational age and had a number of identifiable health conditions in need of immediate treatment –either with medications or surgeries. Life—mine and his—became about surviving another day, making it through another crisis.

Over the course of his 209-day hospital stay, and even after he came home, the focus was on making it through; through another season, another health crisis—whatever curve-ball life threw our way.  At that point in time, there was no way to predict how the cards would fall and no way of knowing what his future might hold.  Many professionals told us there were still so few children like ours who were old enough to really have enough data to be able to predict with any degree of certainty. So, we simply hunkered down and did the best we knew how to do with the minimum of supports we had. All we knew was that we were not quite out of the woods but not quite fully in them.

“When we let go of hope fear wins.”

Through the years, there have been so many well-intentioned people –from health care professionals to total strangers—who confidently told us not to worry, our son would surely catch up. They patted our shoulders in sympathetic displays and told us stories of their cousin’s friend’s uncle’s daughter or their neighbor’s son who were “born early, too; they caught up by the time they were in elementary school.”

When you don’t know what you don’t know and the prospect of knowing certain things is, well, scary, it’s all too easy to want to believe the well-wishers and the miracle-sellers who predict your child’s miraculous growth and feats of development. So, you put on the blinders and tuck your chin down and simply soldier on—hoping for and working toward the best, whatever that turns out to be. In the absence of even a hint at the longer view, we simply clung to hope and pushed our worries aside, taking it a day at a time, an issue at a time.

When our son was ultimately diagnosed with PDD-NOS, it gave us something to hold on to and provided a new context through which to view everything else. As time progressed and some of the more emergent health issues began to resolve or remained stable, we hit a kind of developmental sweet-spot.  Our son began to make tremendous progress and was rapidly gaining many skills which had been so severely delayed. In a seemingly short time, he blossomed from the child who couldn’t even sit up or roll over and who relied on a tube for all his nutrition, to a child who could walk and run, climb and eat, and who had taught himself letters and was showing signs of spelling and early reading skills emerging.

With that swelling surge of hope, we began to really push for supports and look for signs of academic progress.  Some early literacy skills were emerging, multiple word sentences constructed on his speech device – there were glimpses; glimmers of dazzling progress.

Until there weren’t.

Which is where we have been for a while now. I’ve struggled to understand for myself and to try to articulate for others, the degree to which things have stagnated; there’s been some significant regression in some areas. It’s best summed up in a brief conversation I had with our developmental pediatrician this week.

ME: So, if I have three different evaluations, done by two different entities over a two-and-a-half year period – and not shared between each other—and they all show pretty much the same thing, including almost no change over time…

Can I pretty much assume that (1) my son doesn’t test well and the tests aren’t completely accurate and (2) that there’s probably *some* kernel of accuracy there which speaks to a larger issue? The one we think we are seeing?

DR: (wrinkling her nose in a sympathetic grimace, nods her head) Yeah, I would make that leap. Let’s make an appointment to talk about it and find a new way forward.

Hope is important; it is vital. But so is the ability to see beyond the heart’s desires, to peel back the thin veil over your fears and really look at what is in front of you. I’ve been in that process for a while now –none of this is new data; it’s just data my husband and I have finally been ready to see in a different light.  The process of getting to this point has been emotionally messy. It’s been painful to confront our own prejudices.

For years we have both felt like we were sort of straddling two different disability worlds and not feeling like we solidly belonged in either one. Was our inability to settle in, to identify with any one group, born of denial and shame? Why is it so much easier for me to say, publicly, that my child has “mild cerebral palsy and autism” yet I cannot bring myself to declare just as casually that he is intellectually disabled—mentally retarded?  (Yes, I know the term really isn’t used anymore; that’s my point—I’m calling myself out on my own biases and misperceptions.)

Different words will not change my beautiful, smart, funny, loving child. Nothing will.  And yet, the truth of those same words cuts me to the bone, laying bare the fears and grief I’ve held at bay for most of my son’s life; I am the one it changes. I am the one those words challenge.

I hope I am able to meet it with half the grace, determination and heart with which my son has lived his entire life.

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So, um, yeah…about this Autism Awareness Month? I do have something to write about how my local Home Depot has completely embraced not only awareness in the month of April, but, well…I’ll tease you and tell you you’ll have to wait another day for that post. It’s worth the wait, I promise!

I was all set to post pictures and write pithy verbiage much sooner than this, but, well… Nik, apparently, had other ideas.  More specifically, his brain had other ideas. It began misfiring a few weeks ago with some breakthrough seizure activity. We upped his medication and thought we had it under control.  We were mistaken.

The past couple of weeks we’ve been not only monitoring Nik’s seizure activity, but increasing meds again and watching the seizures (or seizure-like activity) transform. We’ve had some unplanned phone calls and office visits with our fabulous neurologist and we have a plan in place.  It’s a short-term plan, but it’s a plan; it includes another ambulatory 24 hour electroencephalogram (EEG) in the immediate future. We need to know if we’re dealing with increased seizure activity or a severe movement disorder.  Think tics which occur at such a rapid and constant rate that they interfere with nearly all functioning and definitely with Nik’s safety and you’ll have an idea of what we’ve been dealing with.

Yesterday morning, we watched Nik lose consciousness for the first time in a long time. Then he napped for more than two hours. We’re pretty darn sure that wasn’t just a tic. So, we’re looking at options for short-term treatment until the EEG. Good times, my friends. Good times.

In the meantime, this week also threw us another curve ball in the form of Nik’s hearing; his hearing is getting worse and he now needs hearing aids.  Those will be fitted in just a couple of weeks.  That news was a bit of a kick in the gut at first, but I’m getting more used to the idea; I just hope Nik will cooperate with wearing them because we’re running out of options. The issue is not volume so much as loss at certain frequencies which fall right in the ranges necessary for speech comprehension.

This new knowledge about Nik’s hearing explains several things with which Nik has struggled during the school year— including attention, following directions, and reading skills. It’s difficult to know what is being asked of you if you can’t understand the words being said.  This change opens up a whole host of questions about what additional supports Nik needs that he is not currently receiving and whether the current placement is best for him. We’re left wondering how to deal with the significant vision impairment and hearing loss and autism and cerebral palsy in a way which allows Nik to play to his strengths versus remediation of weaknesses and in an environment which doesn’t become isolating.

We have no answers yet… just a lot of really good questions. I’m sure I’ll write more about this as it unfolds.

Our biggest goals and strongest desires for Nik are that he learns to read and to communicate more independently. I feel that if we can give him those skills, the rest will either come or he will find ways to compensate. Without those skills, his shot at independence is incredibly limited.

So, on the heels of a very emotionally difficult week (which included a scare about a broken iPad and a 2 hour trip to the nearest Apple store) —and because I may be just a smidgen of a Pollyanna, I am holding on tightly to this little nugget I shared on my Facebook page tonight:

OMG OMG OMG!!! I completely forgot to share this news:

Nik READ the word PRETZEL on a sign yesterday. I was like, “Sweetie, where did you see that word?” He pointed right to it on the sign. Then he promptly asked for ice cream. (We were at Rita’s so it wasn’t an odd request.)


Yin and Yang. Yin and Yang. The journey continues.

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I don’t know if I should be comforted or frustrated by the knowledge that my instincts were right about the ENT.  As Murphy’s Law would have it, Nik’s ear looked great and his tonsils seemed fine when the doctor got a good look.  Well, hell, I’m not a doctor but I’m pretty sure that even I know that a week on heavy-hitting antibiotics might have some slight ameliorating effects.

The bottom line is that the doctor doesn’t think the tonsils are the problem and doesn’t want to remove them; he said he thinks it won’t give us the results we are hoping for and may make Nik’s oral motor issues worse.  Now, here’s where the good doctor and I part company because I’m pretty sure he’s looking at this strictly from his little ENT-corner-of-the-world view while I am looking at the big picture.

To whit:  Nik has a significant history of both cardiac and pulmonary disease or insult.  He was a history of Failure to Thrive (FTT) and is still in the third percentile for both height and weight for his age with a body mass index of less than fifty percent.  This child who used to sleep ten to thirteen hours per night without incident has not slept well in three years; the average amount of sleep Nik now gets is eight hours total —broken into three, sometimes four, segments.  His longest stretch of sleep these days is about three hours.

My once placid and even-tempered child is now a whirling dervish with a recent diagnosis of ADHD.  I’m not sure I buy that, really.  Not as long as there may be any underlying pathology which may be treatable.  And the long-term cost of doing nothing but medicating it and hoping it resolves itself is too great.  The threat to Nik’s overall health and development is not insignificant; the toll on our family as a unit is beginning to show.

I’ve already got calls in to our fabulous pediatrician; I know I can count on her to go to bat for us if we need to be referred outside our state for a second opinion.  Yes, one drawback to living in a small state is that all the pediatric otolaryngologists practice in the same facility.  Apparently, they also all share one opinion among themselves depending on who’s on the schedule.  But I digress.

Nik’s insurance demands that we exhaust all possibilities before they will deign to authorize an out-of-area office visit.  That means our next step is requesting a sleep study.  Call me jaded but I like to think of it as a sleepless study; let’s face it, there’s no way anyone can sleep “normally” when they’re in a hospital and wired to all sorts of machines —especially gadget boy Nik.  But it’s one of the hoops we have to jump through before we can make any real progress.

Stay tuned…

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Courtesy of Joyful Moments Photo



Hope springs eternal in the human breast:
Man never is, but always To be Blest.
~Alexander Pope~


Well, so much for my desire to post something each day during the month of February.  Instead, it turned out to be what felt like the longest month of the year!  What with the snow, and the lack of sleep.  And the snow.  And the lack of sleep. 

Did I mention the snow?  Or the lack of sleep? 

Seriously, the sleep situation has gotten so bad that Nik is now barely making it through a single sleep cycle before he’s awake again. (In case you’re wondering, the average sleep cycle is roughly ninety minutes.)  We use melatonin and neurontin, we’ve tried everything else we can without going to some serious psychiatric medications.  But we’re not going there yet. 

My money is still on the tonsils.  In the last few nights, we’ve actually heard Nik struggling to breath and getting restless about fifteen minutes before he wakes in a panicked frenzy.  The fact that he calms moderately quickly after waking, wants to sleep sitting up (preferably on my lap, of course!), and that his tonsils have been chronically swollen (but not infected) has finally pointed a very large arrow toward obstructive sleep apnea.  No one thought of it for a long time because, frankly, Nik’s never been a snorer and, until recently, noone’s ever noticed a problem with his tonsils. [Disclaimer: Nik makes it exceedingly difficult for anyone to look in his throat; it’s only been in the past six weeks or so that I’ve been able to get a good look while feeding him.]  It makes a lot of sense; the nights his tonsils are more swollen, he wakes more often, is awake longer and is more irritable and hyper the next day. 

I am amazed at my child’s resilience through all of this, though.  I don’t mean to imply it hasn’t affected him —it most definitely has— but the manifestations are the opposite of what I would have expected.  Where I have been struggling to string together coherent sentences for simple conversation with my husband or my mother and having what I think may be anxiety attacks, Nik seems to be functioning relatively well.  He’s eating and drinking well (um, maybe not so much the drinking —we’re still using a 60 mL syringe to get fluids into him), he’s playing, he’s mostly happy and sunshiny. 

Except when he’s not.  Then —forget about it— Nik’s moody and irritable, tantrumy and self-injurious.  Fortunately, those moments aren’t too frequent.  I think the antibiotic for his latest ear infection is helping, too, to eliminate one significant source of distress. 

Apparently, many children respond to obstructive sleep apnea by being very hyperactive and it’s often mistaken for ADHD. Yikes.  Wouldn’t it be awesome if Nik’s tonsils are removed and he becomes my calm, steady, happy-go-lucky good sleeper again?  (I’m keeping everything crossed, folks!) 

We see the ENT tomorrow.  I hope we don’t have a battle on our hands about getting his tonsils out but I worry that we may.  It won’t be because Nik’s tonsils aren’t enlarged.  Rather, there’s a question of whether Nik may have a submucosal cleft palate which would make him a potentially bad candidate for removing his tonsils.  Or so we’ve been told.  The hurdle we have to overcome with the doctors is the possibility of velopharyngeal dysfunction/insufficiency (VPD) resulting from removing the tonsils.  Of course, current research indicates that, in some case, removing the tonsils can actually decrease the effects of VPD.  The irony is that VPD has a significant impact on speech (as well as eating and swallowing).  Wouldn’t it be something if my hungry little bear decided he was ready to eat more than pureed foods and was able to make more vocal sounds once his tonsils came out? 

Just once, I wish it could be a simple, straightforward, black-or-white situation with Nik’s health.  I’m sure he does, too. 

Meanwhile, there have been some moments of sheer delight and celebration wedged in among the ear infections, the sleepless nights, and the days which leave Nik covered in self-inflicted bruises… 

In addition to his recent mastery of socks, Nik has been working on dressing himself.  It’s not quite to the point at which I can hand him a stack of clothing and say “Ok, sweetie, time to get dressed!” But we’re working on it; I suspect we’ll get there sooner than I think.  And self feeding, too!  I think we’re closer than we realize; Nik’s been doing great with a fork and pieces of banana —even some meat this week!  The gloppy spoon stuff? I think I’m the obstacle here as I have a certain attachment to not having food flung all over my walls and carpet.  Sigh.  Nik’s definitely been expressing an intense desire to do things by and for himself lately, —complete with vigorous chest thumping and head shaking when I ask him if he needs help.  

We’re also seeing some major cognitive leaps being made in OT lately, too. 

Imagine, if Nik’s able to continue making such progress when he’s chronically sleep deprived and under the weather, how much more could he do if he were healthy and well rested?  I hope to find out soon.

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Last night’s trial of clonidine was, well…

I’ll let  my posts on Twitter tell the story:

The aftermath of four consecutive nights without sleep (well, three years, really, but we have a few good nights once in a while) has been brutal today.  This is, by far, the worst stretch ever for us.  Nik’s ability to handle even the slightest deviation from routine or expectation has led to a series of frighteningly explosive meltdowns.  Nik’s sweet little face is covered with self-inflicted bruises and he looks like he was on the losing end of a barroom fracas.

We opted to hold off on the clonidine again until we speak with our neurologist and get a clearer plan in place and set some parameters about how long we need to give the clonidine before we call it a bust.

We’ have gotten some good feedback and suggestions from many sources about possible medications to explore.  At this point, though, we are very limited in what we can give Nik because of his swallowing difficulties.  If it can’t be crushed or chewed, mixed in with food, or doesn’t come in a liquid form we can’t try it with Nik right now.  This rules out some of the medications we’ve heard so many good things about, relatively speaking.

Niksdad and I suspect there is more at play right now than just the sleep disorder and are working hard to get to the bottom of whatever it is.  For quite some time now, Nik’s had chronically inflamed lymph nodes, enlarged tonsils (though no sign of active infection), and chronic fluid in his ears —sometimes resulting in infection, sometimes not.  We suspect that the pressure, the shifting fluid, the discomfort of swelling in his throat —all of it— is exacerbating the problem by causing some obstructive sleep apnea.  Not to mention the intermittent and unpredictable changes in Nik’s eating and drinking patterns.  We see the ENT on March 2 and will be discussing a tonsillectomy.    Until then, please send good thought and prayers for sleep. 

Oh, and send coffee.  Lots and lots of coffee!

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This has been an unbelievable week. 

My brother-in-law’s younger brother passed away on Wednesday morning.  Then, his sister died on Thursday evening.  It’s not my story to tell but it has been, as anyone might imagine (and forgive my profanity), a bitch of a week.

Toss into the mix the fact that Nik is not ony not sleeping through the night, but he’s getting more and more agitated each night that he is unable to sleep.  The poor kiddo wants to sleep in the worst way.  Last night, as he fought to go back to sleep for nearly four hours, he alternated between lying in his crib, sobbing and punching himself in the head, and sitting up —also sobbing— and banging his head against the crib.  He would calm himself down and lay down to go to sleep only to be sobbing twenty minutes later.  It’s been heart-wrenching —and beyond exhausting.

Those of you who’ve followed our story for some time already know that we use melatonin, we’ve tried a variety of medications, relaxation techniques, etcetera. Nothing works.  The bigger he gets the worse it gets.  Now, the patterns of disrupted sleep even show up on his EEG’s.  Sleep Maintenance Insomnia is the official diagnosis.  I kid you not; there is such a medical diagnosis and it’s actually fairly well-studied, documented and classified.  And it’s not a good thing for an already undersized, developmentally delayed child with growth issues. 

The human body does most of its growth and repair during sleep; children Nik’s age should be getting an average of ten hours uninterrupted sleep per night.  On a good night, Nik will get about three and a half hours in before he wakes.  Some nights he’s only awake for a short while —twenty to forty minutes.  Others, like the last three nights in a row, he is awake for just as long as he has been asleep.

Tonight, we began a trial of clonidine at bedtime.  We’ve been reluctant to use it because of Nik’s history of rebounds and adverse or paradoxical responses to nearly all medications which alter the balance of his central nervous system.  Desperate times call for desperate measures.  I am worried that we’ll see a lot of grogginess tomorrow —and probably some significant behavioral challenges.  But, you know, I think I can handle those if I’ve actually gotten a good night’s sleep.

Fingers and toes are crossed!

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Valentine’s Day.  A time for romance, for hearts and flowers, extravagant gestures of undying love and devotion.  A time to really show your loved ones how much they mean to you.  This year, I say skip the candy and jewelry, the flowers and dinners.  Instead, do something lasting and truly meaningful…create your living will as part of your advance directives for medical care. 

Yes, I did just suggest you sit down and write down your wishes should you become incapacitated to the point that you are unable to make your wishes known while in the hospital in the middle of a life-altering, potentially life-threatening crisis.  If you want to show your loved ones how much they matter to you, do something now to prevent them from ever having to fight the medical establishment to honor your wishes.

What prompted this unorthodox —and unromantic—declaration from me today?  My sister and her in-laws are, this very minute, in a meeting with hospital officials to discuss the possible fate of their youngest family member.  He’s forty, perhaps not the picture of perfect fitness and health and, certainly, a man living with personal demons.  Who among us isn’t, really?  This man is also a beloved brother, son, uncle, friend to many.  He is sweet and gentle-natured and has been known to give away his money, his possessions, his time to those in need.  He has a reputation for putting others before him.

Friday morning, this man was found unconscious in his home and was rushed to the hospital.  No one knows exactly what happened except that he is now in a coma fighting for his life.  He suffered massive internal bleeding, is on the verge of multiple organ failure, and has questionable brain function beyond pure brain stem activity (which allows one to breathe).  If he survives, he may never be the man his family and friends knew.

Because he did not have a living will or advance directives indicating his wishes for care, the hospital must do absolutely everything in their power to try to keep this person alive —significant amounts of blood and plasma, tests and procedures, mechanical ventilation, mechanical feeding, medications, intensive care facilities, respiratory therapists…and on and on.  The hospital’s efforts are contrary to the family’s wishes; the grief and shock the family is experiencing is beyond awful as they must watch and wait.  Hoping and praying that his damaged body will let go on its own.

Let me be clear; the doctors all agree that this man’s life will never be the same.  He will be alive but may be in a permanent state of complete disability and utter dependence on artificial  supports for nearly all bodily functions.  However, the law stipulates (and the lawyers admonish heartily) that the hospital must do all it can to preserve the life of this man.  Had there been an advance directive,  the situation would be very different.

This situation strikes too close for comfort, I know.  People don’t like to think about their mortality.  Certainly, no one likes to think about the possibility that they could suffer a sudden accident or illness which would leave them unable to communicate their wishes.  Take the time now, while you are healthy and able, to discuss your wishes with loved ones and to commit them to an actual legal document.  It’s simple to do, though certainly not easy to think about.  Niksdad and I had a lengthy discussion about this last night; it left us both raw and gave us much to think about.  There are so many shades of gray and unanswerable questions; I think that is why most people avoid the topic entirely. 


You will save a world of heartache for those you love and who love you.


Advance directives are comprised of three elements: the living will, a medical power of attorney, and a Do Not Resuscitate order (DNR).  Some states honor living wills without the need for a medical power of attorney (California does not).

The Mayo Clinic web site has a good overview of the topic here.  Find out more about advance directives and the laws in your state.  The National Hospice and Palliative Care Organization has free forms on its web site.

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Short and sweet:

We heard from the neurologist today; the EEG results are good.  As in “normal” with no evidence of seizure activity.  This means that Nik will be declared seizure-free for two full years in early March.  The likelihood of his developing seizures later, while not impossible, is significantly reduced.

It’s always nice when we can cross a major worry off our list.

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We survived Nik’s ambulatory EEG!  My little man? A total trooper.  He tolerated all the electrodes and tape and goo for a full twenty-four hours.  It wasn’t all rainbows and unicorns but it was so much better than any of his previous EEG’s.

We won’t have results until next week after the neurologist has had a chance to review the data.  Our money is on the results showing no seizure activity but we’re bracing ourselves just in case we’re wrong.  If we’re right, we get to celebrate two years of Nik being seizure-free!  According to our neurologist, that’s pretty much the benchmark for declaring that Nik is not at risk for a later recurrence of his seizures.

I’d say we’re due for a mark in the win column, wouldn’t you?  Because, seriously, while this is awfully darn cute,

I think Nik would be just as happy not to have to repeat it any time in the foreseeable future.

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