Best laid plans and all that stuff

Apologies if this post is a tad disjointed (and poorly written); the cumulative effects of chronic sleep deprivation seem to be kicking in a little quicker each day.

Nothing’s changed.  Nik’s still in pain and the episodes are increasing in frequency, duration and intensity.  The toll on our family is becoming too great to wait out the dietary changes.  Frankly, I’m not entirely convinced that’s the root of the problem anyway.

Before all the bio-med supporters go getting up in arms, let me clarify.  I do think that Nik will derive benefit from the GFCF diet but I do not think those benefits have anything to do with his autism.  I’ve gotten lots of kind, caring and very well intentioned emails and messages —all of which I appreciate—about articles and plans and protocols that will help “heal Nik’s gut.”  The gut isn’t the problem here.

Nik’s gastrointestinal issues do not stem from food allergies.  They do not stem from leaky gut or malabsorption or anything else because of his atypical neurology.  They are the result of his anatomical differences —his intestinal malrotation and resulting short gut.  He also has little to no transverse colon.  He does not have chronic diarrhea or chronic constipation; in fact, his bowels are pretty darn good on most days, thank you very much.  He does not have horrible stomach pains or painful reflux that we can tell; believe me, he did at one time so we can tell the difference.  In fact, his recent endoscopy in February was so beautiful many of the doctors were envious. 

What Nik does have is some sort of horrible headpain.  We now know it’s been going on for nearly two years and he has been trying his damnedest to tell us.  That’s not to say we haven’t been listening; more that we haven’t been understandingthe message.   True to form, Nik continues to crank up the volume (by increasing the severity of things) until we catch on.

We’ve spent the last two years trying to investigate every possible avenue from GI to ENT.  We even stopped his seizure medications in September because he’d been seizure free since March of 2008 and his last EEG looked great.  That one change gave us a short break from the nighttime wakings and distress for a few months.

It also gave us a false perception that this latest pain was something new and different.It was that perception which led us down the path of diet and ruling out food allergies.  [For the record, Nik's formula —available only by prescription— is already GF, does not contain soy, does contain somecasein and is entirely food-based.  Thus far, any efforts to find a truly GFCF enteral formula has been unsuccessful so we're giving Nik some enzymes and lactobacillus/acidophilus types of supports.]

Things have gotten to the point that Nik, bless his strong little heart and spirit, is so worn out by his own lack of sleep and his own discomfort that he’s barely functional by dinner time.  Sure, he’s present and he’s entertaining —just as long as you don’t expect anything from him like focus, communication, learning. 

Even the quality of his sleep, when he gets it, is different now; he no longer drifts off to sleep looking peaceful and content.  Now, he simply passes out in whatever position he lands in, his smooth forehead creased and furrowed as if he’s fallen asleep in the middle of some deep thought.

Thus far, no medication we have on hand helps him sleep through the night more than one night in a row.  He either doesn’t respond to it in a typical fashion (highly possible with Nik) or it’s simply not the right thing and isn’t working on the right mechanism.  The end result is the same —another night’s fractured sleep filled with screaming, face pummeling pain.

(Sometimes the face getting pummeled is actually mine if I’m not quick enough to dodge when Nik starts rearing in pain.  I’ve gotten clocked in the face a few times.  Ouch.)

I’ve fought the good fight and am not giving up on finding answers for Nik; if there’s one to be found I will not rest until we find it.  Ah, but now we come to the crux of the matter —rest.  The toll exacted on our entire family is simply becoming too great; it’s long since crossed the line from highly inconvenient to flat out dangerous. 

One of these days Nik will either hurt himself badly or hurt me; my husband and I are practically sleeping in separate shifts and his school work is starting to suffer because of all the additional worrying he’s doing about both Nik and me.  I look and feel awful and I no longer even care about it —I’m just too tired to care anymore.  It hasn’t happened but I fear the day when my frayed nerves snap and I end up doing something I would regret.  Nothing abusive or horrible like that —I would walk out the door first and call my mother to go watch Nik— but behavior I would not be proud of having my son witness.

We have become a family on the verge of a crisis.

I placed an emergency call to our neurologist on Monday.  We saw him Tuesday morning and discussed the situation.  He is of the opinion that much of what Nik is experiencing is “typical behaviors seen in children with significant developmental delays or autism.”  He wants us to try increasing Nik’s melatonin at bedtime and giving him a larger dose of Atarax —roughly a fifty percent increase over what we’ve already tried though certainly still within normal prescribing guidelines.  The plan is to try this for two weeks and see how it works.  If it doesn’twork, then he wants to talk about a trial of Risperdal at a low dose. 

I hate the idea of trying the Risperdal; I can’t put my finger on why, exactly, just that it doesn’t feel right (and I’ve learned over time to trust my instincts).  On the one hand the doctor is saying he’s reluctant to label Nik as autistic (“He’s so interactive and social with you”) —though three previous doctors have had no trouble with labels from PDD-NOS to atypical autism.  Yet, on the other hand, he is suggesting that Nik’s issues are potentially best treated with a drug used for many autistic people.  (Yes, I know, it’s not only used for autistics.  However, in the context of our conversations with this doctor, the point was made clear.)  To hedge his bets, he’s also referred Nik for a full autism evaluation by the Developmental Pediatrics group at our home-away-from home much frequented pediatric hospital.  Nik does, after all, meet many of the diagnositc criteria for ASD.

But, here’s the thing: I still believe with all my being that what Nik is experiencing is genuine, acute, physical pain.  In his head.  Migraine or cluster headaches, perhaps?  The pain certainly seems strong and debilitating when it strikes —enough so that it has woken him from a heavily drugged sleep on many nights including the last two —nights when we’ve increased the Atarax by more than fifty percent. 

My son has had a lifetime of unnatural things pumped into his little body; it’s what was necessary to keep him alive when he arrived far too early and far too undeveloped to face this world.  Little by little he’s divested himself of the need for most of his medications and it pains me to start on what feels like a potentially slippery slope of medications and side effects.  If we’re going to start down that path, I want to start with a few more systemically benign medications, you know?

I’ve put another call in to the neurologist to discuss a change in tactic.  (I’m waiting for a call back, probably tomorrow.)  Already, the side effects from just two nights of the new “plan” are evident and I don’t like them.  Nik is groggy and cranky, off-kilter and easily distressed.  His appetite is greatly diminished and his ability to focus on a meal long enough to finish it is dicey at best.  I’ve not been able to leave him alone for longer than ten minutes at a time because his threshhold for frustration is so low and his initial response right now is self-injurious; I have to be nearby to redirect him.

Ironic, isn’t it, that the medications we thought might decreasehis “behaviors” are making them worse?  That also fuels my belief that the current approach is not the right one.  I feel strongly that we need to try treating Nik with migraine medication for a bit before we skip right to the antipsychotics.

*sigh*

Meanwhile, expect my web presence to be sketchy and sort of hit-and-run.  I can’t possibly disconnect completely; you, my cyber friends, are part of my lifeline.  My web of support which holds me up when I am too exhausted and emotional to think straight.  You stretch out your hands to the ether and hold me up with your words of support, your posts of hope, your shared videos that make me laugh and cry.  You help me release the feelings I don’t have the energy to express with my own words. 

You are my drug of choice. *grin*