Archive for the ‘seizures’ Category

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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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.

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:



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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There’s something talkin’ in the wind
Whispering through the trees
That feeling in my bones again
Just puts me right at ease

It takes me back to all the times
I’ ve been here before
But crossroads, old familiar signs
Tell me there’s something more

(A Change In the Air ~ Clint Black)

There does seem to be the scent of change in the air lately. As I wrote in this poem, it feels like spring is finally coming after a long, dark winter. I don’t just mean this particular season; I mean a winter of the spirit, of the soul.

It feels as though we are on the cusp of some big breakthroughs in many areas with Nik. Since we decided to take him out of school this past autumn (you can read the saga here, here, here, here, here, here, here, and here), he’s made such remarkable progress in all the ways which inspire hope and joy in my heart. No, Nik is not yet potty trained or eating by mouth; he still has a way to go in those particular areas. But he has made such great strides in connecting with and integrating his environment, connecting on a deeper, more intimate level with so many people —and differentiating between us all.

The bonds between both Nik and his dad and Nik and me, have become so strong that we are no longer peripheral to his daily activities —no longer merely the people shuttling him back and forth to appointments, changing him, feeding him, picking up after him; we’ve become central figures —the ones he wants to play with, to dine with, to hang out with. The ones he misses when we are gone from his side for more than an hour or two. The joy in his little face when he hears my voice when I come home from the gym. The gleeful way in which he drops everything and races to the gate when Daddy comes home from school or work; the squeals of delight when he sees his coat and knows he is going “Zoom-Zoom” —off on an adventure with one or both of us. The deep, crinkly-eyed laughter we share as he looks into my eyes when I tickle him or dance with him, or teach him how to flip backward off my lap to do a standing somersault.

The connection goes so deep, the current runs so strong and true that it makes me weepy nearly every time; we’ve waited so, so long for this connection. It feels fresh and new and exciting every day.

Nik has come light years in a few short months in the way he communicates and cooperates, as well. Nik has progressed from completely ignoring our requests such as “Hand me the red square” when we are playing with his shape sorter, for example, to not only complying roughly seventy-five percent of the time but to also no longer simply throwing his toy over the gate when he is finished with it. Now, he will bring the toy to the gate and, if one of us is in view, he will babble or make some sort of noise to get our attention and then hand us the toy.

I realized just yesterday, as I watched him try and fail a few times to get one of the pillows from the sofa over the gate, that Nik’s tolerance for frustration is increasing; he’s developing more of a determination to persevere. He still gets upset when certain things don’t cooperate with him, but —by and large— it seems that he makes so many more attempts at things before he falls apart if he cannot do it. He is more easily calmed down in the aftermath, as well.

If I see he’s very frustrated with something, I’ll let him have a bit of a tantrum over it and then I’ll come into the room and simply say, “What is it, buddy? Can you show Mommy what you want?” Usually, he then engages with me to help him problem solve; I am trying very hard to not simply do things for him any more. Nik has more than proven he is perfectly capable of figuring things out, but sometimes he just needs a little reassurance that he can, in fact, do it. Not terribly different from any other four-year old, I imagine?

I am very excited about getting Nik’s communication devices; I haven’t written much about that because I didn’t have any idea how long it would take or what to expect. We are completing the paper work to order the devices recommended during his AAC evaluation at the end of January. In the meantime, though, I just found out today that the local branch of our statewide assistive technology initiative (DATI) has both devices available for us to borrow for up to two weeks at a time. If no one else is waiting for them, we may be able to renew them for an additional two weeks which should nearly cover the processing time for Nik’s own devices. I’ll tell you more about the devices and how we can use them in another post a little later.

In the aftermath of the EEG fiasco earlier this week, our fabulous new neurologist has made arrangements for Nik to have an ambulatory EEG done locally —this coming Wednesday! We are hoping that the results will give us some more information about Nik’s odd, recurring pains. I truly don’t think they are seizures but it will be good to have the results to rule it out.

Dr. G recently increased one of Nik’s seizure meds —and we’re seeing some positive changes, thus far. The increased dose does tend to make Nik a bit drowsier —though you’d be hard pressed to tell during the day! If you didn’t know Nik and watched him play during the day, you’d think he was a fairly energetic boy; I can see that he is a bit less frenetic and is able to focus on one thing at a time for longer periods. He also takes slightly more quiet breaks and will lay down to play with a toy for a few minutes before he jumps back into the fray.

Where I really see a change is that he is napping again —up to two hours at a clip, if I let him! And it doesn’t seem to interfere with his ability to fall asleep at bedtime. Nik is averaging about ten to eleven hours a night; I wish I could say he is consistently sleeping through the night —but I am hopeful that he will again! The best part though is that both Niksdad and I think we are seeing much less seizure activity since the increase. It’s only been four days so far, but it’s a good sign.

And, of course —as you saw earlier this week— the eating is progressing very well. Now, mind you, we’re nowhere near even being able to count the calories in what Nik is eating and even farther away from thinking about losing the feeding tube. But, the progress Nik has made in the last couple of months is unbelievable. It’s as if he is constantly challenging himself to try something new.

The key, I think, has been in recognizing and honoring his need for autonomy; Nik wants to feed himself —which is right in line with his extremely strong spirit of self-determination! It seems that, as long as Nik has his own utensil —and, lately, his own bowl —and can have some measure of control over eating, he is a willing participant. I might even venture to call him a joyful participant. He still struggles with large quantities of more than a half-teaspoon at a time, or with chunks larger than a grain of rice; he hasn’t quite figured out the whole chewing mechanism but we think he is on the way. Where, a year ago Niksdad and I were running on the faintest vapors of hope that Nik would ever eat by mouth again, we are now both excited and enthusiastic. Mealtimes are wonderful family times again.

Many would say that our life goes at an insane pace —and I suppose they would be right. Between Niksdad’s nursing school, nursing clinicals, and work and Nik’s multitude of therapies, playgroup, and swimming —with the very frequent doctors’ appointments thrown in for good measure— and my renewed attempts to get in regular work outs at the gym and maybe even a date with Niksdad every once in a while, I guess it is rather frenetic. But it feels like the pace of a family finally hitting its stride after so many stumbles and false starts; like we’re actually gaining some ground right now.

And that’s a pleasant change, indeed.

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Someone stop me before I haiku again!

Feeling overwhelmed
By what I need to prepare
For the hospital

Food, clothes, music, toys
Things I need to occupy
My little wild man

Three days and two nights
Sounds just like a vacation
To me it is hell

Doors and wires and doors
Boundless energy to spare
Nik not me, I fear

If answers can be
Gleaned from this long EEG
I will be happy

Don’t think I will sleep
During the next few days
Which makes me cranky

I think I will get
A massage when I get home
While Niksdad takes over

I worry a lot
About how long it will take
For Nik to rebound

Meanwhile, tomorrow
PT, OT, and swimming
Will occupy us

I may be without
A way to communicate
With the outside world

But fear not my friends
I shall return on Friday
Online once again

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Wow, that was some party last night, wasn’t it?
Sorry I ran out of food so early! 😉

Thanks for coming to hold my hand — it means a lot to me. Prayers, hugs, and drinks…all are appreciated! (Mom-NOS, are you hungover today? 😉 )

Nik had a good, solid night’s sleep last night and woke this morning in his usual chirpy, laughing and happy mood. He seems none the worse for wear…except the purple goose egg on his forehead.

We’re still going to be watching over him but I feel much less anxious after a good night’s sleep for all of us. Sleep really is such a balm, isn’t it?

I hope you all made it home safely; I’m afraid I passed out after the post! LOL We’ll have to do it again sometime soon— maybe at someone else’s house? Or better yet, let’s throw a giant party to celebrate all the good stuff. ‘Cause I know there’s plenty more of that coming, too!

Happy Saturday. We’re off to the park later…race you to the swings!

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Been reading but not commenting tonight…too much energy expended today. I didn’t really want to blog about this tonight; I was going to send an email to one person in particular but thought that it was unfair to put that burden on her shoulders. I know she would willingly carry it, but it didn’t seem fair to ask that of any one. And maybe I really just need some Mama-lovin’ from all my blogging buddies…

Long story short, Nik hit his head pretty badly at school today and had a cluster of “mild” seizures pretty close together. The seizure activity isn’t that unusual —he does have “absence” seizures which are moderately well controlled by meds. But the frequency and characteristics of the seizures this morning were different; usually he just stares and zones out. A few times this morning, he went rigid and trembled a moment or two then zoned out for a bit. I think it really upset one of the para’s; she totally adores Nik and hats to see him go through this. Me, too.

We saw Nik’s pediatrician this afternoon. There’s no sign of any fracture, thank God! She told us to watch Nik closely over the weekend in case there are any changes in seizures or his behavior. If so, it’s the long trek to the hospital (an hour) for CT scans or whatever else they decide he may need. I don’t think it will come to that, but I am not going to say I am not worried.

But you know, I am so sick and tired of worrying about my child every time I turn around; it’s depressing and exhausting. Frankly, it sucks. Yeah, I know, “Get over it, Niksmom; it comes with the territory.” Well, I wanna move sometimes, really! (She whines, stamping her foot for emphasis!)

I suppose the bright side to this is that school is looking much more closely at that one-on-one situation. Maybe now we can get support from the staff and put some pressure on the administration to come through? God that sounds so Pollyanna-ish but I really do need to stay focused on the positive or else I will just get sucked into this swirling vortex of bleakness and despair which hovers so closely over my heart on some days.

So, I’m afraid there’s no cute Nik story to share tonight…just Niksmom having her own personal anxiety-fest. It’s BYOB or whatever else you want. Misery loves company sometimes.

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