Update

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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"Static Quo"

I’m trying hard lately to see the glass half full instead of half empty. But when my tank of sleep is running on fumes, it gets difficult to see past the haze and fog of sleeplessness and worry. In spite of getting some decent sleep last night —courtesy of a new prescription we tried with Nik which knocked him on his little hiney —I still feel exhausted and headachy today. I want a snow day off —a holiday from worry and constant watchfulness —just one day would be fine.

I’ve procrastinated too long to give the entire back story. Suffice to say, Nik is starting to show signs of developing a significant food allergy to legumes. You know — peanuts, green beans, lentils, peas, chick peas (garbanzos), guar, soy —lots of healthy sources of fiber and protein for a little guy who doesn’t yet actually bite and chew food. We’ve stopped giving him anything but fresh, plain, organic food so far in an effort to mitigate the rashes and gastric distress that seem to have popped up out of nowhere. Except, the odd thing is we think maybe they’ve been there all along and we didn’t know it. The clawing at an ear that’s not infected; the rubbing of his head and poking at his eyes in spite of being on medication to stop migraines. The gastric distress which causes him to wake screaming in the middle of the night every night —in spite of the fact that his reflux is well under control.

Nik’s modus operandi has always been to give us physical clues to follow. If we are too slow to pick up on them, his body always seems to know just when to kick it up a notch or two to really get our attention. At least, it sure seems that way every time it happens. We’ve gotten pretty good about paying attention and trying to decipher his messages before they reach a crisis stage. We don’t really have any choice; the one time we didn’t pick up on his cues for so long we almost lost him.

I feel like I am teetering on the razor’s edge all the time. Nik shows so many signs of being “normal and healthy” but the possibility of slipping off, of developing a major medical issue, is always just a hair’s breadth away. If I relax my guard, well…I just can’t. It’s the thing that keeps me so in tune to his every shiver and sigh —even in the twilight of sleep. Some people hear “food allergies” and think “What’s the big deal? Just don’t give him those foods.” In Nik’s case it’s not that simple right now.

This new development, if it really is an allergy —and wouldn’t it be nice to finally have a freaking answer— has provided a real conundrum. Where Nik is totally tube dependent right now, we must continue to give him formula. In an effort to help relieve some of Nik’s symptoms, we’ve recently stopped feeding him anything by mouth. But his formula contains soybean oil, and green beans, and pea protein. Oh, and guar (also a legume) in the form of the added fiber (think Benefiber. Yep, legume based.). Even with the absence of food —and now that we are hyper vigilant in watching for signs —we can see the changes in Nik immediately after he gets a tube feeding. The red ears, the runny nose, the clawing at his ear, tugging at his clothing —it all ramps up again. It’s the worst after dinner —his largest meal of the day.

Common belief holds that someone allergic to soy should be able to handle soy oil because the most of the sixteen different proteins are eliminated in the processing. Um, someone needs to explain that to Nik’s poor little body. He had a terrible reaction to one small cheez-it cracker yesterday at play group. (N.B. Nik has not exhibited any signs of allergic reactions to wheat or dairy.) The offending ingredient? Soybean oil.

The immediate reaction was small in and of itself but it tipped the balance just enough that Nik was miserable for the rest of the day —the screaming, crying, clawing at his ear, hitting himself in the head which have become so disturbingly familiar to us.

We saw the pediatrician yesterday to rule out an ear infection; we were all certain it wasn’t that but had to know before we could proceed down other avenues. We now have a referral to an allergist and a new prescription antihistamine, Atarax. Nik can’t take Benadryl because he has a paradox response; he’s up for hours and it gives him very little relief. Atarax is actually used for anti-anxiety as well and works differently than Benadryl. Where Benadryl works on peripheral histamine receptors (think skin and extremities), the Atarax binds to receptors within the GI and respiratory tracts —working more from the inside out than the outside in. Of course, that also means it has a bit stronger effect on the whole nervous system.

We gave Nik a dose just before dinner. I have to say, it did do wonders to keep the allergic response at bay. But poor Nik conked out at the dinner table and had to be poured into his pajamas and bed! He woke, briefly, about six and a half hours later —but he woke happy and pain-free! We gave him another dose —and a quiet toy to play with —and another half hour later he was out cold for the rest of the night. The drawback is that it knocks him out cold and has some lingering systemic effects. Today, he is off-balance and very subdued. He feels funny and knows it; he’s been very clingy and easily upset. Not a good long-term solution; we fought too hard to get him off of medications that affect him this way to go back. Oh, and let’s not forget the potential effects of central nervous system depressants on respiration; not a good fit for a child with a chronic lung disease.

So, here we sit, betwixt and between. We have theories but not enough evidence, some evidence that doesn’t fit, and a little boy who keeps trying to tell us what he needs but cannot make himself understood.

I think I understand how he feels.

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Rainbows and Unicorns

For five consecutive nights —hopefully six after tonight —my son has slept peacefully through the night. Ten to twelve hours.

Straight.

Through.

The.

Night.

The last time he did that my son was about two and a half years old.

The changes I have seen in my child in the past four days have been nothing short of miraculous to me —and that even accounts for nearly a full day spent in the emergency room over the weekend. (It turned out to be nothing they could identify and he’s completely fine now.) I’m trying so hard to wrap my brain around the words to convey the magnitude and scope of these changes; the words and changes are swirling so fast, I simply cannot make them make sense yet.

I can tell you this; there is not a single area of development that has not been positively impacted by the discontinuation of Nik’s seizure meds. Motor skills are blossoming, his appetite is returning and his resistance to certain food textures is diminishing. Communication is increasing as he tries to couple simple sounds and gestures in meaningful combinations. His four year old attitude when he doesn’t want to cooperate is crystal clear —yet he complies anyway. Problem solving skills are increasing at an alarming rate; I see new hazards in my home each day that I didn’t think he even noticed or could figure out how to reach.

Nik’s therapists and I have marveled at how hard he pushes himself; how he challenges himself to not only master a skill but to push through his fears or his sensory issues. The things he could not tolerate at all in the past two years he now attempts consistently; each time he pushes just a little farther in spite of his own resistance. What used to cause him excruciating cognitive dissonance now merely seems to challenge him to try harder.

My heart aches with the stretching it has done to accommodate my maternal pride, my hope, my ever increasing sense of ease; I can feel it oozing out all over people around me, too, as I comment on blogs or talk to friends and family. The love, the hope, the profound respect for my child and appreciation of his intellect and drive; it’s all so much larger than I have allowed myself to embrace these past couple of years.

I feel like we’ve landed in Oz and everything has become technicolor.

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Anyone know the zip code for Hell?

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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Sleepless in Seattle Nik’s House

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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Leaving Lamictal

One of the things we’re learning on the fly around here is that drugs which affect the central nervous system do so in myriad and unpredictable ways. Similarly, you would think that if x dose going up created side effect y that the same would hold true for a decrease, as well. Trust me when I tell you that thinking will bite you in the ass.

I’ve alluded it to it in previous posts; we are in the process of weaning Nik from the last of his seizure medications. It is a slow and very painstaking process; it is also highly unpredictable. By that, I mean that Nik’s bodily response is unpredictable and, frequently, very extreme.

All of the mystery pains and most of the non-specific illnesses which have plagued Nik for more than a year and a half now can, we are certain, be traced to side effects from his Lamictal. I cannot possibly begin to express my outrage and frustration over that fact in a single blog. The time and energy Niksdad and I spent taking Nik to doctor after doctor, waiting for specialists that never bothered to call us back or send a report summarizing our long awaited visit, the revolving door of neurologists consulted who wanted to simply throw more medication at the symptoms without considering that medication might be the root of the problem; it all leaves me sick and resentful that my child had to suffer so much.

It took Nik’s rash scare earlier this summer —and subsequent total cessation of Lamictal as a precaution against Stevens-Johnson Syndrome —for Niksdad and I to make the connection between some of Nik’s sporadically irritable or distressed behaviors and the Lamictal. We got our degrees from Google U researched as much as we could about Lamictal. We finally had to download the complete prescribing information from the GSK website; no one ever provided us with such overwhelmingly, mind-numbingly complete information; but it was exactly what we needed.

As we educated ourselves —about such things as time to peak, second peaks, and half-lives to name just a few things —we came to realize that the less common and even rarer side effects exactly described the constellation of symptoms which have been plaguing Nik for so long. It finally felt like an answer —and some significant relief for Nik and for us —was in sight.

It was through the willingness of our current neurologist —the awesome and highly responsive Dr. G. —to acknowledge that no one really knows the exact mechanism by which Lamictal works —and his immense trust in our knowledge of Nik —that we were able to make a case for weaning him off of it entirely. Knock wood, Nik’s been seizure free since March; were that not the case Dr. G. might not have been so quick to acquiesce to our request.

The process is slow; we are weaning one-half of one tablet every two weeks. Nik will not be completely off the Lamictal until Thanksgiving; there is something both satisfying and highly appropriate in that timing. The road to the last dose on the last day is rocky and uncertain.

With each titration downward, there is a corresponding shift in Nik’s response. Some of it is highly encouraging; we’re seeing shifts in attention span and visual attending to things, increases in social interactions, and new communication skills. However, there is much that is extremely difficult to watch and wait through. The ill effects of each change are significantly more marked in the first few days after a decrease. Within a specific time frame after getting the Lamictal we can see the progression of effects on Nik’s body.

Though we have no proof —other than our intuitive and somewhat educated guesses —it certainly seems as if Lamictal acts primarily on the Vagus Nerve; when the peak dose hits Nik you can almost trace the route of the nerve by the side effects —beginning with eye discomfort, headache, ear pain and paresthesia, and ending with extreme gastric discomfort. The whole experience leaves Nik highly agitated and distressed until it passes.

The times to peak and second peak in the evenings are the worst. These are the times that usually rouse Nik from a deep sleep and require intervention on my part —be it holding his head or his hands in mine, rubbing his belly, or simply singing quietly to him. The peak and second peak are usually anywhere from two to four hours apart with the first peak hitting anywhere from 1.5 to 4.8 hours after he gets the medicine. With each new titration downward, the times shift just a bit one way or the other and can be affected by other factors such as was the medication given on a full or empty stomach, how tired is Nik, is he ill, etcetera. Unpredictable predictability I call it.

As Nik’s body adjusts to the changed dose —usually after a few days —the nights get a little easier. The time I spend with him goes from roughly thirty minutes to about fifteen during the first peak. The second peak can go from about thirty minutes to five minutes —just enough for him to recognize that I am there and to calm down. Sometimes he doesn’t wake for the second peak but simply cries out in his sleep; it’s enough to wake me but he is calm and quiet before I even get out of bed.

The days don’t seem to affect Nik as badly; I sometimes wonder if his awareness of pain is diminished or overshadowed by other sensory input as he takes in the world around him. Of course, as we continue to decrease the dose, we have been seeing a return of the awful head slamming against the floor when he gets frustrated; his threshold for frustration seems to be quite low lately as well.

I’ve had the good fortune to be able to correspond with several autistic adults who have shared their experiences with Lamictal with me; most of them agreed that the effects of weaning were often as bad as they were in ramping up the dose. There was also a consensus that there could be random energy surges as well as the more visceral effects; it is possible that those surges are what wake Nik, too. They certainly could account for some of his highly energetic —bordering on frenetic —and rascally behavior during the day!

I could go on and on about the things we are seeing and realizing; that might require a new post each day as the changes are coming so suddenly. Tonight, for example, Nik had a complete frenzied meltdown when we tried to put the duct tape around his pajamas as we have done every single night since late March. We even made a game out if it and he came to love the whole routine. Suddenly, tonight, he was a frantic, flailing, kicking, screaming wild cat. We’re learning to adapt when these things come up but it sure is distressing to see my normally happy-go-lucky little guy turn feral on us. He was so upset that he was actually punching Niksdad as he carried him up to bed. Niksdad! His bestest buddy in the whole wide world! It was heartbreaking to watch.

I share this long, laborious tale for a number of reasons. First, for my readers who have gone through the ups and downs of trying to find answers and help over the past 20 months; I wanted to fill you in on what I hope will lead to a happy resolution —eventually. Second, I share this as a cautionary tale for anyone who is going through a horrendous experience with their nonverbal child —a child who may be unable to communicate that they feel funny due to medications. I share this to urge you to educate yourselves fully (and I mean fully) on everything about the medications your child takes or is about to take —or even medications you are discussing with your child’s doctor.

So many of the medications which can help some people can also harm others terribly —especially when it comes to the realm of anything which affects the central nervous system. The balance is such a delicate one that any alteration in the brain’s signaling mechanisms and pathways can create great disturbances even with very low doses of medication. That’s not to say I think medication is bad for everyone. On the contrary, sometimes it can be remarkably helpful. But I think so many of us mistakenly assume that a physician prescribing a specific medication knows absolutely everything about it; they don’t and they can’t really predict how each individual patient might respond to a drug. Would that they could.

It is up to us as parents, advocates, and consumers to educate ourselves, to do our utmost to understand —and to demand information so that we can understand —all the possibilities. Our children deserve that diligence; they deserve to have us fight as hard for them as they fight to cope with their daily environments or to be heard, understood, and included.

I’d be happy to share more about our experiences and discoveries with anyone who is interested. Feel free to contact me by email at niksmother (at) gmail (dot) com.
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ETA: For those who have been led to believe that one cannot get “The rash” after having been on Lamictal for a sustained period of time (we were told that very thing by three doctors within a 4 day period), it’s not true! Page 51, second to last bulllet point of the prescribing information from GSK indicates (emphasis mine):

• Although most patients who develop rash while receiving LAMICTAL have mild to moderate symptoms, some individuals may develop a serious skin reaction that
requires hospitalization. It is not possible to predict whether a mild rash will develop into a more serious reaction. Rarely, deaths have been reported. These serious skin reactions are most likely to happen within the first 8 weeks of treatment with LAMICTAL. Serious skin reactions occur more often in children
than in adults.

• Rashes may be more likely to occur if you: (1) take
LAMICTAL in combination with valproate [DEPAKENE®* (valproic acid) or DEPAKOTE®* (divalproex sodium)], (2) take a higher starting dose of LAMICTAL than your doctor prescribed, or (3) increase your dose of LAMICTAL faster than prescribed.

In addition, the following appears in more than one place in the document –the first being prominently placed on the very first page of the fifty-seven page document:

NEARLY ALL CASES OF LIFE-THREATENING RASHES ASSOCIATED WITH
LAMICTAL HAVE OCCURRED WITHIN 2 TO 8 WEEKS OF TREATMENT INITIATION. HOWEVER,
ISOLATED CASES HAVE BEEN REPORTED AFTER PROLONGED TREATMENT (E.G., 6 MONTHS).
ACCORDINGLY, DURATION OF 1 THERAPY CANNOT BE RELIED UPON AS A MEANS TO
PREDICT THE POTENTIAL RISK HERALDED BY THE FIRST APPEARANCE OF A RASH.

ALTHOUGH BENIGN RASHES ALSO OCCUR WITH LAMICTAL, IT IS NOT
POSSIBLE TO PREDICT RELIABLY WHICH RASHES WILL PROVE TO BE SERIOUS OR LIFE
THREATENING. ACCORDINGLY, LAMICTAL SHOULD ORDINARILY BE DISCONTINUED AT THE
FIRST SIGN OF RASH, UNLESS THE RASH IS CLEARLY NOT DRUG RELATED. DISCONTINUATION OF TREATMENT MAY NOT PREVENT A RASH FROM BECOMING LIFE THREATENING OR PERMANENTLY DISABLING OR DISFIGURING.

Please note: I am not a medical professional nor do I purport to give any medical advice in this blog. The information shared here is simply anecdotal and based entirely on my family’s experience.

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