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:
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.