Claire

Hi Oly Mom, (To the regulars--your point was good, I am only posting only general knowledge.) I bumped up another thread for you called "Photosensitivity and Tics, biofeedback?" Some info buried in there. No direct studies, but some indirect ones about flicker (the light flicker in the CRT monitors and fluorscent lights can be the major trigger) --if you read through them you can find pieces of the argument. My understanding is that you can have your doctor write a note for our school that your son can't watch CRT screens--I don't think back-up studies are needed with such a note. I don't know what they will pay for, but they should accommodate (504). I assume you have done a 'no screens' test or something to be sure of the correlation? It is a very restrictive thing for your child so it is good to make sure it is a significant trigger first, as it isn't a trigger for everyone (though I personally think a substantial number are affected, it is still only a subset). If you aren't certain, it would be great to get your doctor to have your child visit for the before and after to become convinced if this is a trigger...and write you the needed note. I realize that not all doctors are so cooperative though! Also, Doris Rapp book --I think it was 'Is this your child' and Not "our toxic world" comments on a study linking switching to full spectrum lights (from fluorescent?) reducing ADHD by 30%. But I never saw the study itself. Claire Reflex epilepsy and reflex seizures of the visual system: a clinical review Epileptic Disorders. Volume 2, Number 3, 129-36, Septembre 2000, Synthèse Summary Author(s) : Benjamin G. Zifkin, Dorothée Kasteleijn-Nolst Trenité, 49 Stratford Rd, Hampstead PQ, Canada H3X 3C6. Summary : Reflex epilepsy of the visual system is charecterised by seizures precipitated by visual stimuli. EEG responses to intermittent photic stimulation depend on the age and sex of the subject and on how stimulation is performed: abnormalities are commonest in children and adolescents, especially girls. Only generalised paroxysmal epileptiform discharges are clearly linked to epilepsy. Abnormal responses may occur in asymptomatic subjects, especially children. Photosensitivity has an important genetic component. Some patients are sensitive to patterns, suggesting an occipital trigger for these events. Myoclonus and generalised convulsive and nonconvulsive seizures may be triggered by visual stimuli. Partial seizures occur less often and can be confused with migraine. Although usually idiopathic, photosensitive epilepsy may occur in degenerative diseases and some patients with photosensitive partial seizures have brain lesions. Sunlight and video screens, including television, video games, and computer displays, are the commonest environmental triggers of photosensitive seizures. Outbreaks of triggered seizures have occurred when certain flashing or patterned images have been broadcast. There are regulations to prevent this in some countries only. Pure photosensitive epilepsy has a good prognosis. There is a role for treatment with and without antiepileptic drugs, but photosensitivity usually does not disappear spontaneously, and then typically in the third decade. Keywords : photosensitivity, epilepsy, electroencephalography, reflex seizures, television, video games, intermittent photic stimulation, occipital lobe, migraine, light (adverse effects) Pictures ARTICLE Definition and history Reflex epilepsy of the visual system is characterised by seizures precipitated by visual stimuli. We exclude seizures triggered by language processing, which usually involve some visual input such as reading. Historically, photosensitivity has meant an abnormal response to light, and since the development of the stroboscope, an abnormal response to stroboscopic (flicker) stimulation during EEG recording is generally called photosensitivity. More recently, "fixation-off sensitivity" without flicker sensitivity has been identified as a separate entity (see below). The modern environment is a rich source of potentially seizure-triggering visual stimuli delivered by flickering light, pattern, and video screens to which people are exposed at all ages, world-wide. There has been a revival of interest in visual sensitivity in the past 15 years. After important initial studies in the 1940s and 1950s, visual sensitivity was regarded more as a curiosity until the mass media reported seizures triggered in otherwise healthy children and young adults by video games and TV broadcasts. Television remains the commonest trigger of these seizures in daily life. Seizures induced by light stimulation were known from classical antiquity, and in the 20th century, even before the EEG era [1], and Adrian and Matthews documented the effect of light on the normal EEG [2]. The stroboscope became available after World War II and rapidly led to further progress as flicker stimulation and its clinical and EEG effects could be easily studied. Important studies by Walter and Walter [3], and later by groups led by Gastaut in France and by Bickford in America, yielded basic information about those EEG responses to stroboscopic flicker (intermittent photic stimulation ­ IPS) which were reliably linked to seizures. In the last quarter century, seizures triggered by more complex visual stimuli such as patterns were studied, and the importance of eye closure and the role of visual fixation in occipital lobe EEG phenomena were reported in detail (recently reviewed in [4-8]). Responses to intermittent photic stimulation in the EEG laboratory Several abnormal EEG responses to IPS have been described since the late 1940s, and their occurrence in the non-epileptic population and their clinical significance with respect to epilepsy have long been a subject of discussion. Walter and Walter [3] illustrated an absence attack provoked by the stroboscope in a child with epilepsy and presciently noted that 12-18 flashes/s were the most effective stimuli and that the triggered responses were similar to the spontaneous discharges ­ "typical wave and spike". Almost at the same time, investigators led by Gastaut [9] in France and by Bickford [10] in the USA concluded that 2 main types of EEG response could be elicited; the "photomyoclonic" response (equivalent to Gastaut's "réponse fronto-polaire par recrutement") not linked to epilepsy, and the "photoconvulsive" ("réponse fronto-centrale hypersynchrone") response associated with epilepsy. The photomyoclonic response is now called photomyogenic and the photoconvulsive response is now called the photoparoxysmal response (PPR) [11]. Some early studies were hampered by a limited number of EEG channels and misleading EEG montages, and some of their conclusions now can be seen to be incorrect. For example, Walter and Walter [3] labelled an event that was probably a photomyogenic response as a "myoclonic seizure" and Mundy-Castle [12] misinterpreted both EEG and clinical responses to IPS in asymptomatic adults as epileptic events. There are other difficulties in comparing later studies of the response to IPS as a finding either associated with epilepsy or predictive of it. These include different definitions of photoparoxysmal patterns, different techniques of stimulation, different patient populations, and the number of EEGs performed for each subject. This can lead not only to false negative but also to false positive results, e.g., when a patient has spontaneous epileptiform discharges. Today it is accepted that among responses to IPS in untreated subjects, only generalised paroxysmal epileptiform discharges (spikes, polyspikes, and spike-and-wave complexes) are clearly linked to epilepsy. Reilly and Peters [13] emphasised the predictive value of an epileptiform response which continues after the train of flashes stops but its predictive value as distinct from that of an otherwise identical response that ends with the train of flashes remains controversial. Kasteleijn-Nolst Trenité [14] found similar results, but brief persistence of the abnormal response can also be related to how quickly the technician stops the photostimulator after the response begins. Photosensitivity is genetically determined. Familial sensitivity to IPS was first described in 1949 [15]. There is no difference in rates of photosensitivity between relatives of nonphotosensitive epileptic subjects and relatives of controls, but photosensitivity is significantly more common in relatives of photosensitive patients. Results of such studies (for example see references [16-18]), and of other studies of the response to IPS, are complicated by the age and sex dependence of the phenomenon, which is most frequent in adolescents and females, by different patient selection criteria, and by differences in how IPS is performed. A recent study [18] reports that photosensitivity is significantly more common in 5-10 year-old siblings of proband offspring of a photosensitive parent (50%) than in siblings of photosensitive children without parental photosensitivity (14%). The highest risk of seizure (33%) was in photosensitive siblings of a proband with parental photosensitivity and the lowest (4%) in nonphotosensitive siblings of probands without parental photosensitivity. Photosensitivity occurring in some patients with identifiable epileptic syndromes, e.g., juvenile myoclonic epilepsy, is inherited separately from the other epileptic disorder. A single gene for photosensitivity has not yet been identified. In normal children and adults, figures for sensitivity to IPS depend on age and sex distribution of the study population, the criteria for normality, and on how strictly the abnormal response to IPS is defined. Interpreting the response to IPS in an individual patient is also subject to caution: sensitivity is influenced by level of alertness, whether the eyes are open, closed, or closing at the beginning of IPS and during stimulation, the properties of the stimulator, how it is used, and the frequencies and intensity of the flashes. It is incorrect to conclude that a patient is not sensitive to IPS from a single test session. Red flashes have been found to be especially provocative of PPR. Different results reported for the effect of red stimulation are related to the different wavelengths used, and only long-wavelength red (> 600 nm) is more provocative: this stimulates red cones only, without the normal colour opponency which would be elicited by red stimuli matched to red cone sensitivity at 580 nm [19]. Even so, except for special research projects, laboratory IPS is delivered using standard stroboscopic flashes without coloured filters and normative studies have used these stimuli for decades. Different approaches have been used to study the incidence and prevalence of sensitivity to IPS. These divide broadly into studies of asymptomatic subjects with an abnormal response to IPS, and investigations of patients with a history of seizures. Paroxysmal responses to IPS are well documented in apparently normal subjects, especially children and adolescent girls. Doose [20] found photoparoxysmal responses in 7.6% of 662 normal children, but did not exclude those with headache or a family history of epilepsy. These investigators also used looser criteria for an abnormal response to IPS than those used by experts now. Eeg-Olofsson and Petersén [21] used stricter criteria for the normal population, excluding those with headache, paroxysmal abdominal pain, or a family history of epilepsy, and found that 8% of 673 normal children aged 1-15 years had "abnormal patterns" with IPS. Only 2/181 (1%) subjects between 16-21 years old had these, both of them women. Criteria for an abnormal response to IPS were, however, loose, including diffuse paroxysmal slow activity and spikes without generalisation. The age and sex distribution of sensitivity to IPS in both studies is shown in figure 1. Screening studies of normal young adult male candidates for aircrew training in the UK showed the fall-off in photosensitivity expected in a somewhat older population of males, with just 0.3% showing epileptiform activity with IPS only, and 0.5% with epileptiform activity both at rest and with IPS. Follow-up showed that the only subject who later developed epilepsy had epileptiform activity both spontaneously and with IPS [22]. Studies in epileptic patients show that an epileptiform response to IPS is found in about 10%-20% of children and 5%-10% of adults, and that this response is more common in females at any age. The flash frequencies most likely to elicit a PPR range typically from 9-18 flashes/s. Only about 3% of the photosensitive population is sensitive to IPS at 1-3 flashes/s. It is important to note that about 48% are sensitive at 50 flashes/s and that about 15% are sensitive at 60 flashes/s, which are also the frequencies of AC current in Europe and North America respectively [23]. Photosensitivity does not constitute an epileptic syndrome on its own. It is found in all the main categories of epileptic disorders and can be a characteristic of some disorders such as eyelid myoclonia with absences (EMA) (see below). Sensitivity to IPS is customarily divided into 3 groups: patients with flicker-induced seizures only, patients with flicker sensitivity and some other epileptic disorder, and asymptomatic subjects with photosensitivity as an isolated finding. Most subjects in this last group are primary school age and adolescent girls, and many such subjects have migraine [24]. However, this last category is now unclear, as Kasteleijn-Nolst Trenité et al. have shown that over half of known photosensitive epilepsy patients questioned immediately after stimulation denied having had brief but clear-cut seizures induced by IPS and documented by video-EEG monitoring [25]. This must raise the question of whether asymptomatic photosensitive subjects have unnoticed reflex seizures triggered by stimuli encountered in daily life. Pure photosensitive epilepsy Pure photosensitive epilepsy is characterised by generalised seizures exclusively provoked by flicker. According to Jeavons and Harding [23], 40% of photosensitive patients have this variety of epilepsy, and television is the most common precipitating factor. Video games, implicated for more than a decade, have recently become notorious, although not all such cases represent pure photosensitive epilepsy. Other typical environmental stimuli include discothèque lights and sunlight reflected from snow or the sea or interrupted by roadside structures or trees. Pure photosensitive epilepsy is typically a disorder of adolescence, with a female predominance (reviewed in [6, 23]). The seizures are reported to be typically generalised tonic-clonic, as in 84% of Jeavons and Harding's patients, whereas absences occurred in 6%, partial motor seizures, possibly asymmetric myoclonus in some cases, in 2.5%, and myoclonic seizures in 1.5% of patients. However, these proportions are subject to selection bias: patients will come to medical attention after a convulsion in front of the TV but may have already had many less obvious unobserved seizures while watching TV. The developmental and neurological examinations are normal. Resting EEG may be normal in about half the patients, but spike-and-wave complexes may be seen with eye closure. Intermittent photic stimulation evokes a photoconvulsive response in virtually all patients. Depending on the photic stimulus and on the patient's degree of photosensitivity, the clinical response ranges from subtle eyelid myoclonus to a generalised tonic-clonic convulsion. Pure photosensitive epilepsy is typically conceptualised as a variety of idiopathic generalised epilepsy, but rare cases have been reported in which EEG and clinical evidence favours the occipital lobe origin, as predicted by theoretical models and by studies of pattern-sensitive epilepsy (see below). Flicker-induced occipital lobe partial seizures Intermittent photic stimulation can also induce clear-cut partial seizures originating in the occipital lobe. As in more typical photosensitive subjects, environmental triggers include TV and video games. Many of these patients have idiopathic photosensitive occipital lobe epilepsy, a relatively benign, age-related syndrome without spontaneous seizures. Patients with spontaneous seizures, symptomatic localisation-related epilepsy, and occipital lesions have also been reported, including patients with coeliac disease. Others may have localised or regional dysplastic lesions. Some have Lafora disease. The clinical seizure pattern depends on the pattern of spread: the visual stimulus triggers initial visual symptoms which may be followed by versive movements and motor seizures, but migraine-like symptoms of throbbing headache, nausea, and at times vomiting in the immediate postictal period or even as part of the seizure (ictus emeticus), are common and can lead to delayed or incorrect diagnosis [5]. Occasional patients have been documented with subtle localised occipital ictal activity beginning during IPS, but with visual symptoms becoming clinically evident only several minutes later, after IPS had ended. This pattern may explain why some patients have seizures soon after ending a sustained exposure to visual stimuli such as a video game rather than while playing the game [26]. It is then difficult to discriminate spontaneous from evoked seizures. Photosensitivity with spontaneous generalised seizures Jeavons and Harding [23] found that about one third of their photosensitive patients with environmentally precipitated attacks also had spontaneous seizures similar to the reflex seizures of pure photosensitive epilepsy. Spike and wave activity was common in the resting EEG of patients with spontaneous seizures, and only 39% of patients had normal resting EEGs. Photosensitivity may accompany idiopathic generalised epilepsies, especially juvenile myoclonic epilepsy, and is typical in EMA. It may also occur with crytogenic generalised epilepsies such as severe myoclonic epilepsy of infancy (Dravet Syndrome), or with degenerative gray matter encephalopathies such as Lafora's disease, Unverricht-Lundborg disease, Kufs' disease, the neuronal ceroid lipofuscinoses, and others collectively known as the progressive myoclonus epilepsies in which photosensitivity at low flash frequencies is typical. These syndromes are associated with photic cortical reflex myoclonus and the patients also have clear-cut action myoclonus. Pattern-sensitive epilepsy Pattern sensitive epilepsy consists of seizures triggered by viewing patterns, typically stripes. Almost all such patients are sensitive to IPS, and about one-third of photosensitive patients may have epileptiform EEG abnormalities on viewing stationary striped patterns. Pattern sensitivity is enhanced if the pattern vibrates. Clinical pattern sensitivity is much less common, about 2% in Jeavons and Harding's work [23] and was found in 6% of subjects by Kasteleijn-Nolst Trenité [14]. Pattern sensitive epilepsy is characterised by generalised convulsions, absences, or brief myoclonic attacks provoked by viewing patterns such as escalator steps, and striped wallpaper or clothing. It is of particular interest because the generalized clinical events and EEG abnormalities are activated by an occipital cortical stimulation [4]. Self-induction of visual-sensitive seizures Patients with all types of visually induced seizures may induce attacks with manoeuvres producing visual stimulation and may be compulsively drawn to sources of flicker or pattern stimulation such as TV screens. Patients sensitive to eye closure may use a compulsively repeated eye rolling and eyelid flicker movement to self-stimulate. Monitoring has shown that the range of stimulatory behaviours is a seizure trigger rather than being a manifestation of the seizure. Intensely pleasurable sensations have been reported with these, and some patients induce seizures to relieve stress or to gain attention. Recognition of such a sensation may help in differentiating EMA from self-induced seizures. Many patients may refuse treatment or not comply with it [8, 27]. Fixation-off sensitivity The term "fixation-off sensitivity" (FOS) has been applied to describe subjects in whom epileptiform EEG activity, typically bioccipital, appears with abolition of visual fixation. Panayiotopoulos and co-workers have explored this phenomenon in detail (for a review, see [7]) and described clinical patterns of the associated seizures. Testing for FOS requires complete darkness or the use of devices such as goggles with high-diopter lenses to abolish fixation: the epileptiform activity can be suppressed, and thus missed during testing, if the subject fixates on even tiny sources of light such as those on the EEG machine console. Panayiotopoulos has emphasised the importance of distinguishing the act of eye closure from the eyes closed and eyes open states in evaluating spontaneous and triggered epileptiform EEG abnormalities. Patients with FOS are not typically sensitive to IPS but often have florid interictal occipital epileptiform activity with the eyes closed. This must be distinguished from eyelid myoclonia with absences (EMA), in which photosensitivity is present and in which epileptiform EEG activity and brief attacks appear with eye closure. Further discussion of FOS is beyond the scope of this paper. Seizures induced by television and electronic screen games Seizures induced by television screens and video games have been reported for decades [28, 29]. Television-induced seizures were initially thought to be related to malfunctioning of the set, but advances in understanding of epileptic sensitivity to light and especially of pattern sensitivity have led to better understanding of the epileptogenic properties of TV screens. In the 1990s, electronic screen games became widespread and news reports of triggered seizures brought this issue to the public eye. After specific TV commercials were found to trigger seizures, the role of screen content in triggering seizures became generally recognised. More recent outbreaks of seizures triggered by animated cartoon broadcasts have become notorious [19, 30]. These events have also caused many patients with epilepsy who are not photosensitive to believe erroneously that they are at risk from video games and these patients need accurate information about their personal risk [31]. A television screen produces flicker at the mains frequency, effectively generating IPS at 60 Hz in North America and 50 Hz in Europe. Photosensitivity is more common at the lower frequency, with nearly 50% of patients sensitive to 50 Hz IPS [23], and TV sensitivity has indeed been a greater problem in Europe than in North America. Television-induced seizures, however, are not only related to AC frequency flicker. Wilkins et al. [32, 33] described patients sensitive to IPS at 50 Hz, who apparently were sensitive to whole-screen flicker even at distances greater than 1 meter from the screen. Others were not sensitive to the AC frequency flicker, but responded to the vibrating pattern of interleaved lines at half the AC frequency that can be discerned only close to the screen. Wilkins et al. emphasised that increased distance from the screen decreased the ability to resolve the line pattern and that a small screen evoked less epileptiform activity than a large one. Binocular viewing was also needed to trigger attacks. Domestic video games using the home TV screen viewed at close distances for long periods of time, and at times under conditions of sleep deprivation and possible alcohol or nonmedical drug use can thus, not surprisingly, trigger seizures in predisposed individuals not known to have epilepsy, as well as in known photosensitive patients. Not all seizures triggered by TV and similar screens fit this pattern. Seizures can be triggered even at greater distances and by noninterlaced screens without flicker, and flashing or patterned screen content has been implicated in these. Nevertheless, the 50/25 Hz frequency appears to be a powerful determinant of screen sensitivity and in countries with 50 Hz AC, special 100 Hz TV sets have been shown to greatly reduce the risk of attacks [34]. The broadcasting of certain forms of flashing or patterned screen content has been responsible for outbreaks of photosensitive seizures, most notably in Japan, where 685 people, most with no history of epilepsy, were hospitalised after viewing a Pocket Monsters cartoon [19, 30]: broadcast standards now exist in the United Kingdom and in Japan to reduce this risk but not in the USA or in Canada. European Community standards are expected soon. Further outbreaks are to be expected if viewers, especially mass audiences of adolescents, are exposed to such screen content when guidelines either do not exist or when they are violated [19]. These incidents are both predictable and preventable. Seizures triggered by electronic screen games are closely linked to pattern sensitivity [35, 36]. In Europe, patients with video-game triggered seizures are also more likely to be sensitive to IPS at 50 Hz than are photosensitive patients without video-game seizures [37]. However, electronic screen games add additional factors not generally applicable to passive TV viewing, which may lead to seizures in predisposed subjects [36]. Although video-game sensitivity is usually not distinct from epileptic photosensitivity, some subjects are not photosensitive and may have seizures by chance, or induced by thinking or other factors involved in playing the game [35, 38]. Patient-dependent factors include not only the type and degree of visual or other sensitivity, but also elements such as prolonged play, at times with sleep deprivation, and possible nonmedical drug use. Screen-dependent factors are similar to those for TV, but the patient is usually closer to the TV set when playing a screen game. Image-dependent factors are important: certain types of screen background, movement, flashes, lines or stripes, spirals, etc., are predictably more epileptogenic than others. The steady maximal brightness (brightness of the brightest scene lasting > 10 s) should not be > 100 lux. Software or game-dependent factors include the speed of the game, the type of visual-motor interaction demanded by the game (typically by using a joystick, mouse, or keyboard), the types of eye movement required, and the cognitive processes involved in play. Puzzle games, for example, may not present provocative flashes or movements, but may have strongly patterned screen content and require manipulation of spatial information [36]. Prognosis and treatment Photosensitive epilepsies are usually diagnosed in childhood or adolescence. The prognosis for control of the seizures induced by visual stimulation is generally very good, especially in pure photosensitive epilepsy and in juvenile myoclonic epilepsy, in which valproate is the drug of choice. However, only about 25% of patients with these conditions will lose their photosensitivity, and this only in their third decade [39]. Thus most such patients will relapse if medication is discontinued and especially if this is done too early, in their teens. Serial EEG evaluation using a standardised protocol, recently reviewed by a European expert panel [40], with determination of the photosensitivity range (see video) can thus be helpful to assess the response to treatment and for evaluation of photosensitivity after withdrawal of medication. The wider the range the more the patient is at risk of experiencing visually evoked seizures in daily life [14]. Patients with pure photosensitive epilepsy may be interested in treatment without drugs. Stimulus avoidance and stimulus modification can be practical in some patients and can also be combined with AED treatment. The effectiveness of these manoeuvres will depend on the individual's degree of photosensitivity, awareness of subtle signs and symptoms when exposed to potentially provocative stimuli, and on patient compliance. Avoidance of obvious sources of flashing lights and video games, especially more provocative ones such as Super Mario World [36], avoiding prolonged game play, increased distance from the TV set, view-ing a small TV in a well-lit room, and using a remote control to avoid approaching the set are all important and useful strategies. Covering one eye and turning away if the screen flickers or if myoclonic jerks occur is a helpful technique. The use of special 100 Hz TV sets has been shown to reduce sensitivity in many patients: the screen is inherently less provocative than a 50 Hz screen, but screen content may still be provocative. There are as yet no published studies on the effect of 120 Hz screens in North America where the TV screen is powered by 60 Hz current. When needed, the drug of choice is valproate in monotherapy. Experience suggests that clobazam could be a helpful adjunct. Lamotrigine, topiramate, and levetiracetam have also been recommended as possible second choices but there are no conclusive studies of prolonged use of these drugs in human photosensitivity. Prevention of mass outbreaks or small numbers of TV-induced seizures such as those triggered in the United Kingdom by certain advertisements or by the Japanese Pocket Monster programme involves preventing the broadcasting of potentially dangerous screen content. This has been a focus of intense attention recently: it is important to emphasise that while not every such seizure can be prevented, mass outbreaks are preventable and can be expected to occur when guidelines for screen content do not exist or when they are contravened. Standardisation of intermittent phonic stimulation in the routine EEG laboratory Responses to IPS are dependent on the frequencies used, on the characteristics of the stimulator, and on how it is used. It is important to deliver stimuli that are likely to elicit abnormal responses in subjects with photosensitive seizures while minimising the chance of such responses in others. We suggest avoiding the automatic stimulation sequences available on some EEG machines. The technician must be able to stop IPS as soon as generalised epileptiform activity occurs: induction of a convulsive seizure should be avoided as it is not very informative and is unpleasant and potentially dangerous. Recommendations for a standardised protocol for performing and reporting results of IPS have been made by a European expert panel and were recently reported [40]. The accompanying video provides an illustration of how this is performed: the procedure is neither difficult nor time consuming. Because of the important role of the TV screen itself in triggering seizures independent of programme content, routine IPS should include stimulation at frequencies of 50-60 flashes/s depending on the local AC frequency, and the corresponding 25 or 30 flashes/s rate. Some degenerative disorders are associated with abnormal responses to slow rates and stimulation protocols should include rates of 1, 2, and 3 flashes/s. Responses to IPS depend on certain characteristics of the photostimulator. The flashes must be sufficiently bright and the stimulator must deliver consistently bright flashes through-out the required frequency range of 1-60 flashes/s. Many commercial stimulators are not capable of delivering this range of flash rates and others cannot do so with consistent flash intensity. Some have small rectangular surfaces. The Grass PS-22 photostimulator meets these criteria with only a slight reduction of intensity at high flash rates [6]. The 13-cm circular lamp housing is fitted with a diffuser: this is recommended, even with other stimulators, to reduce variability which may be due to the different types of flash tubes and stimulator surfaces. A 13-cm round surface will provide a sufficiently large visual field at a viewing distance of 30 cm and permit observation of the patient. Another photostimulator meeting these criteria is the SIGMA Medicin Technik FSA 10 - 2D and 10 2-O stimulators, recently developed and tested by the manufacturer and by the Dutch epilepsy centre Stichting Epilepsie Instellingen Nederland (SEIN). Videotape legend The video includes a demonstration of a standardized EEG laboratory procedure for intermittent photic stimulation (IPS) and for determining the photosensitivity range. It also demonstrates sensitivity to IPS, television, video games, and pattern. Method of intermittent photic stimulation: after the patient has been placed 30 cm from the photic stimulator, separate 10-second trains of flashes are given for each frequency with intervals of at least 7 seconds between stimulus trains. The eyes are open for the first 5 seconds of each train of flashes and closed for another 5 seconds. We advise the following frequencies: 1, 2, 4, 6, 8, 10, 12, 14, 16, 18, 20 flashes/second and 60, 50, 40, 30, 25 flashes/second. Stimuli start at 1 and progress to 20 flashes/second unless generalized epileptiform discharges are evoked at a lower frequency. Stimulation is resumed at 60 flashes/second, decreasing to 25 with the same precautions. Total screening time is 6 minutes or less [6]. CONCLUSION Patients with visual-sensitive seizures are familiar to the epilepsy specialist, but general neurologists, paediatricians, and general practitioners should also expect to encounter them. The modern environment provides many sources of epileptogenic stimulation for these patients and for those with previously unsuspected photosensitivity: the prognosis for most is excellent if the trigger is recognised and appropriate treatment begun and continued. Sensitivity to TV screens and video games is not rare and restrictions on potentially dangerous screen content are needed to prevent outbreaks of triggered seizures. The treatment of epileptic photosensitivity is a good example of an approach combining antiepileptic drugs, other individual measures, and a role for society at large. Received July 24, 2000 / Accepted July 28, 2000

Bump for Oly Mom. Indirect (not direct) Studies listed if you read through the posts. Claire

Hi all, My son's latest Pyrolluria test came in today from Direct Health Care. It was 62.5!! <10 is normal, and 10-20 is borderline. What a major difference between labs. So from this, I highly recommend that you use the Direct healthcare lab to avoid false negatives. Direct Healthcare access 847-222-9546 Remember, the test is only $40 plus overnight shipping. I called their clinic advisor, and she will only give supplement recommendations to our doctor. I just talked to our DAN doctor and he has already tried to call her and is quite interested in finding out about the b6/zinc supplements (he knew about reducing oxidative stress). He was impressed by the hard data on the high % of this in autism/adhd (50%, 30% respectively). It involves 'megadosing' with B6 and I would prefer to get her official recommendation, with his blessing Just in case, I am posting to FJ on braintalk, our local Pyroluria expert, if you want to hear what she says... http://brain.hastypastry.net/forums/showth...3325#post263325 Daniel, thanks for the tics/yeast link, that is great to see! We need to read about medical successes on this, to help us feel we are on the right path. We haven't used Nystatin yet, but it is definitely a prescription drug. Ok, here is the no posting part. My son told me today that he thinks my posting about him is a real invasion of his privacy, even if I am anonymous. I have never hidden this from him. I told him I kept it general, and he said it is ALL private, and his personal business. He said it affected his ability to trust me. So, of course I have no choice but to honor his request. So this will be my last post. I am sorry to leave here--it has been quieter lately, but I still have been checking in daily. I wanted to 'help' others--but at this point, I don't know that I have anything new to add anyway, and mostly just repeat myself! I wish you all the best, and will check in to see how you are doing. That is hard to do actually, as then I want to post back! God bless you all and may all of your children (and yourselves) lead full and happy lives. Claire

Bumped up for Sari. Claire

Hi Sari, I bumped up a note I put together for newcomers. Between this thread that Chemar put together and that one, you should have a good starting point--then I just encourage you to read the threads and ask questions. Claire

Hi Ronnas, and welcome back from your vacation! I read your update on Braintalk re taking a hiatus from supplements and diet and going right back to it. Very interesting feedback on Gameboy.... First of all, I am just waiting for the day when I improve my son's health issues enough that he isn't so sensitive to TV. Phyl and Heather found the same reduction in TV sensitivity as you have said--in their case yeast overgrowth was a major culprit. My son's yeast levels jumped up and unfortunately, I do think this is making him more sensitive again, bummer. I read that sometimes when kids get elevated yeast, their body has a new setpoint for it and it isn't a matter of just reducing it, but continuing to monitor it--how frustrating if true! You know, I notice the same behavioral reaction with my son with too much computer (even if it isn't setting off tics). He gets angrier and more rebellious. He gets so angry when his time was over. When he didn't watch at all we didn't have these issues. To some degree, I feel it is 'addictive' to him. I know after college, I took up Space Invaders at a local hangout and would play for 2 hours straight--it was hard to stop. I actually spotted it in an entertainment center recently and tried it out. It was amazing, my adrenaline shot up and my breathing changed and I felt like I HAD to just get the next one right. It was not fun at all, just like some compulsivity. I didn't like it and just stopped completely. Of course I am an adult and can discern my feelings. I remember someone whose kids had an Asperger's dx. Their kids was on the computer constantly. I always wondered whether the computer itself contributed to his fixation with it (But I never commented). Of course, I am sure this doesn't apply to everyone--just like the tic trigger doesn't. But I am glad you brought this up about a behavioral reaction. I have thought about it for my son many times, but have never heard anyone else comment. It does make me wonder...! Claire

NancyE, I just heard back from my doctor--I had left a message. His response was just that he couldn't see how oral glutathione could cause yeast issues. Since he doesn't want to go to the transdermal one yet, I couldn't ask him where he gets it. Oh well, sorry I don't have more info. I did read on the internet that oral AND transdermal glutathione had less issues with yeast than DSMA, which is what my doctor believes. Claire

Hi Carmon, Thanks so much for letting us know your results, you know I think it is helpful for everyone to know. Though I am sorry that this didn't offer any improvement for your son, but at least now you won't 'worry' about him watching TV etc on days that you aren't able to spend the time with him! My son never said that tics hurt (except one that did for a few days), however, he said he feels so much more comfortable without them. Good luck with your next step, and congrats on being so observant to notice changes during that week. Claire

www.enterolab.com I have been hanging out a little at the gluten free board on Braintalk, and they are big on Enterolab as their 'preferred test' for gluten intolerance. I read from Dr. McCandless that the Great Plains tests can have false negatives, so I just ordered this test for my son. We are about to reintroduce wheat in through rotation weekly, but if he has a gluten problem after all, it could be a problem. I just want to make sure. He has been doing so well without wheat, that it is a little scary to reintroduce it. Our family has diabetes, hypothyroid and that can be associated with Gluten sensitivity. It's a stool test. Gluten Sensitivity Stool Panel Complete $229. I ordered the step up, with the gene panel. The gene just shows a tendency. If he has it, then I will let other family members know. It includes a free casein test. It also shows gut inflammation, and I want to see if he has improved. Claire

Hi Chemar First on psyllium (I hope this also applies to guar gum which I take) http://www.healingdaily.com/colon-kidney-d...n-cleansing.htm The bulking effect of psyllium also works to rid the colon of toxic substances, including heavy metals, as it acts almost as a sponge to soak them off the walls of the intestine. As for neurotherapy, my biggest concern is that not only is this experimental still, but it had side effects. For my son, them retraining the target frequencies resulted in a huge drop in his concentration (noticable by him, his teacher and me, and acknowledged by the neurotherapist). He also started to just fall asleep in the car, which he never did before (and messed up his bedtime). Then after 4 weeks of 'waiting it out' based on the instruction of our neurotherapists, when I told him I wanted him to change the frequency targets back to where my son's concentration would improve, he said that those settings could introduce tics!!! (Remember, my son doesn't have tics except from computer). So he messed up his concentration, and then to bring him back to normal, said he would risk giving him tics. I was furious and lost $4500--he never refunded my pre-payment. I used Dance Dance Revolution dance game to try to refocus my son's attention. It did help. So, from our experience, it does have an impact, just not the one we were looking for. Maybe in 10 years, more practitioners will have refined these techniques, but I don't want them practicing on my son, given the side effects. Given his high visual reactivity, he may be more reactive than most. Claire

NancyE (I thought Nancy was you!) Thanks for the update. Well, maybe the oral glutathione is what made MY son's yeast worse! I will discuss changing it with his doctor and find out where he gets the transdermal stuff. Claire

Hi Nancy, I will ask my doctor next time we see him (maybe too late for you). He said that if my son's antioxidant levels didn't move up next test, we would add the transdermal glutathione to his capsules. Claire

Hi Chemar, That was an excellent post, thanks! I remember your talking about chlorella, but it was before my son could swallow pills, and we tried the granules and it made us both gag. Heather discusses NDF for mercury, and I recently saw Mustang Carole's post that NDF had chlorella in it. Anyway, I will ask our doctor whether we can add chlorella to our supplements. I also read that psyllium husk fiber can absorb mercury, but they don't come in capsules and my son only swallows capsules, not pills. I am allergic to psyl husk fiber so I take guar gum for hopefully the same purpose (a soluble fiber). Thanks again, Claire

jc, I am so sorry that you had to go through this with your son! I realize that symptoms are very severe for some people, poor kid! I know that you have read these boards a lot, and so you know that I agree with Chemar that mercury/yeast/allergies can disrupt his system and worsen tic tendencies. I am sure that you know I like to recommend the 'no screens for a week' test to people with severe tics (it may not warrant the restriction if the tics are mild), but I am not sure if the Haldol would interfere with the 'test' or not. You are right that Haldol may not have this impact on your child, and I am sure you will keep a close eye on it. Chemar mentioned tardive dyskinesia and I remember reading a study posted on Braintalk somewhere that 60% of people can end up with this condition permanently from prolonged use of the drugs commonly prescribed for tics. I know just enough here to be dangerous though, so clearly do your own research and ask your doctor. If you do a Google search on this thread, you may find out the study. http://brain.hastypastry.net/forums/forumd...splay.php?f=253 I know at least one poster on Haldol said their doctor monitored for it. This is what I found: http://brain.hastypastry.net/forums/showth...8341#post178341 Claire

JC, How old is your son again? Most of us here feel that we have time to investigate alternative methods of healing before/instead of doing medicines. Was there some urgency to stop the ticcing, e.g. was he hurting himself, was he interfering with his life, was he getting badly teased? When my son was 8 and ticced, not one child ever commented. We eliminated the tics before it ever mattered socially to him. I do understand that for an older child, they might push you to help them eliminate tics for different reasons, but if they don't mind the tics and they aren't interfering, I think it is actually easier to find out what works if they are not on medicine. I am just trying to understand your situation, not criticize in any way--your pediatricians questions surprised me, which is why I asked. I thought in the US that they often didn't medicate unless the tics caused problems, perhaps it is different in Singapore. Claire

Oh Chemar, I never knew that anyone considered putting your son into a ward for disturbed children. It makes me feel so very sad. One of those: "There but for the grace of God..." kind of feelings. I know that you were attuned enough to see what was happening, and passionate enough to make things right, but I think of all the other mothers whose children had such a reaction, who don't have a clue that it is a side effect of a drug, versus just thinking that their child's mental health is deteriorating. How many are there? We know they are there, that is frightening and sad to me. Now at least jc will know if her son has similar reactions to know that it is the drugs! Thanks for sharing this. I almost feel like we should have a thread titled: bad side effects of haldol, etc... so that parents of children on medicines who are seeing complications and whose doctors assure them it isn't the medicine can be informed. Claire

Not sure if all of the newcomers have read about the 'potential' (I want to say definite, but I will restrain myself) thimerisol (mercury-based preservative) link to tics and other neurological disorders. Just making sure you know they are still in many of the flu shots. I have heard that Chiron's vaccines do not have them, but in any case, apparently you can check. I love their insistance that it really doesn't matter, but they are taking it out over time anyway. Why oh why in 2000 did they finally order it out of all children's vaccines EXCEPT flu vaccines that the also recommend for children?? http://www.cnn.com/2004/HEALTH/07/30/child...s.ap/index.html "Some parents have been reluctant to get their children flu shots because, unlike other childhood inoculations, the influenza vaccine still contains a small amount of a mercury-based preservative called thimerosal. While numerous scientific organizations insist the small amount won't harm, Gerberding said manufacturers will make between 5 million and 6 million child doses that are thimerosal-free, a step toward eventually eliminating the preservative." This is a sore spot for me because my son slept 14 hrs straight on the day he was born, then got his first shot (with thimerisol/mercury), and didn't sleep more than 1.5 hours straight for 8 months and it took him 2 hours a night to get him to sleep--for a total of 12 hours of disturbed sleep every 24 hours, as opposed to the average 16 hours for babies. He was still getting up 2 times a night until age 6. At age 10 it still took at least an hour to sleep, no matter how tired he was (and he is very active). Melatonin 'saved' us last January (very low dose). As most know, he does have high mercury--and I can't think of another source for him (he didn't even like fish except occasional fish and chip). Nw, with his mercury going down (and some help from magnesium?), he is finally falling asleep normally....and he is almost 11!

Hi jc, Here is the mag taurate brand I ordered. http://www.vitaminshoppe.com/browse/sku_de...requestid=55303 You are right about the ratio. Our doctor doesn't want my 10 year old having more than 250mg/day and he wants it split into 2 doses. I am debating getting the calcium version, e.g. part calcium mag citrate and some just calcium citrate, then the mag taurate separately. Finally, for everyone, since my son started taking the extra mag taurate (250 vs 125), he doesn't seem to need the melatonin at all to fall asleep. It has only been 3-4 days, but I will keep you posted. He was already down to 1/4 mg of melatonin, but this seemed to put him over the next level. Claire

jc I asked a similar question on another thread! Taurine alone, doesn't have magnesium. What I don't know is whether magnesium taurate has taurine! Different kids react to different supplements. I would take away the taurine for a week, and see how he does. Then add it back in one night (don't tell him which one it is--which might influence him). If he reacts again, I would assume it is the taurine. Claire

Hi all, Interesting. My son used to grind his teeth too in his sleep also, and did chip his baby teeth from it. His dentist kept saying it was normal and he would outgrow it. I had also heard it could happen from a bad bite, which was part of our motivator for braces. At any rate, the only time I notice is when we go on vacation and stay in the same room. He was still doing it a little over Christmas, though less than when younger--perhaps the braces helped a bit, since we weren't doing any supplements then. As you know, in January he got tested for vitamin deficiencies and we started supplements then--interestingly (based on Chemar's comment) one was panthotenic acid! Anyway, we went on vacation in mid-February and it was completely gone. Since then, we haven't been in the same room together overnight (our hotel in July had partitioned rooms), and I have just assumed it is still gone. By the I don't think I added the magnesium supplement until after this trip where I saw the improvement, since he wasn't deficient there. Jean, the Spectracell vitamin deficiency test doesn't require a doctor's signature. If you pay up front it is $265 ($700+ otherwise!). Our insurance covered 70% of it--again, with no doctor signature. They just needed a diagnosis for the test, which Spectracell gave (and is legitimate!). I really like this test--I have felt marvelous myself lately after taking it and starting my own program (though I am also cutting out milk based on the IgG test). I even just got my husband to take it--we will see what happens. Claire

Chemar, I have seen recommendations for taurine as a supplement for various things. Do you know if Magnesium Taurate provides taurine? Thanks, Claire

Jean, Ann Marie, Ann Marie, It is like that with my son...I debated pointing out the screens/tics correlation until I decided that if he didn't see it and believe it, he wouldn't cooperate when I wasn't around (initially he didn't). He 'gets' it with TV/tics and wheat/excema, but not so much the supplements, and definitely not artificial additives. I am thankful it is 7 years until college--time to either minimize this restriction (Heather and Phyl seemed to notice far less sensitivity when their children's yeast issues were resolved) or hopefully have him buy in more. Jean, My son is doing fine, thanks. 9 months since his last tics--e.g. the Harry Potter 2 movie disaster). And other than a mishap and a few tics a few weeks before the movie (his teacher had him watching TV again), it was 6 months with no tics before that. For a while this summer we were up to 1 hour of computer a day and 1 hour of TV, all on the LCD monitor. I am not sure if we pushed it or whether it is because his yeast got worse, but after a couple of weeks of this he said he 'felt' that a tic was coming again (nothing visible to me), so we did no screens to reset. We only did it for 4 days, because the feeling was gone in 2 days. He is now at 30 minutes of computer a day and 2 movies a week, of course all on an LCD monitor. I don't really want daily TV. Fortunately, our daily show was 'Friends' and that is mostly a listening show vs visual, so we 'listen' to Friends with the screen turned around when he is really in the mood. That helps him adjust to no TV during the week again. I am definitely going to buy an AlphaSmart, just debating whether the cheapest one will meet his needs. He says he feels fine--'normal', as he calls it. The fears are gone. He sleeps in the total darkness and has actually moved to a new bedroom further from us. I do use the Inositol that you and Chemar mentioned, perhaps every other day, because I noticed on his Spectracell test that he is just above the deficiency level--so at the very low end of normal. He actually dropped on his Inositol level from the first test in January. [i was really glad to hear your son's fears have improved.] Emotionally he still seems fine too. I am trying not to bias my own observations, but I think that the worsening of the year does have some impact on him. Or should I say, now if he has a bit of sugar I notice more of a reaction. But I wasn't aware of or watching for this until after I got the results, so I admit I can't be totally objective. With tics it was much easier, as there was a certain frequency that was quite measurable. With behavior and emotions, it is so much more subjective. I am trying not to worry about next year and resolving the TV situation at school--I can't believe how much TV they use in his middle school! At least we have the doctor's note, but you know I don't want him feeling different. With some of the things going on last year, he seemed to get mentally tired earlier than normal, and I hope we get past this also by the time school starts. It is not something I can measure in the summer. Actually, we need to do some math review, so I guess I will find out after all! Have you tried again with more LCD TV? My recommendation if you are trying to test out TV is to start slow. My biggest reason for this--it is difficult to cut back once they experience a greater frequency of viewing (at least with my son), e.g. it is easier to add more in than take some away. Claire

Hi Gina, I know that Sheila, who runs this site, has also commented on the same correlation between tics and braces that Chemar has mentioned. My son has braces, so I can only give anecdotal comments. He started getting tics from computers in September (~8 yrs old) , then he got braces at the beginning of November, 2 months later. In other words, his issues started before the braces. We figured out the computer correlation in November, and the tics went away. However, he got more sensitive throughout that year, until TV was also an issue. I can't say whether his increased sensitivity was from the braces or that it was just a normal progression, or some of each. I know that there were times were I felt the braces were a nightmare and contributing to a general discomfort (beyond the discomfort of the braces) and adding stress. Since he has elminated foods and reduced his mercury, he seems okay with them. The real test will be in 2 months when he gets them off. I am very very curious as to whether he 'feels' different. I certainly wouldn't put the though in your son's head that braces might make the tics worse. He needs to cooperate with the braces and this could really hurt his attitude. But I would be more attuned to and sympathetic to how hard it might be for him to restrain himself from chewing on a wire or pressing on a bracket with his tooth until it pops off. I never criticized my son for this--him 'worrying' about that caused him so much stress (more than average) and I defended him fully with his doctor when this did happen. Claire

Hi Ann Marie, How frustrating for you with your doctor not recognizing it even for migraines. By the way, did 'no screens' improve the migraines also? I know they can have multiple triggers too. When I asked our main pediatrician about computers and tics, he said he had never heard of such a thing. Then his partner saw our son for something later and I asked him and he said that he saw it all the time! Then a friend told me of the warnings about tics on computer games--granted, they said to stop in case of photosensitive epilepsy, but at least they still mentioned that the games could trigger tics at all. I felt so 'vindicated'. I realized how frustrating it was to be limited by the amount of knowledge to specialized conditions that a particular doctor had--and got on the internet, as you did! As for our school, what 'saved' us is that his teacher 1) had noticed the tics in my son before we figured this out totally, and 2) said that computer screens also made her feel badly, so it was 'real' to her. We loaned an LCD monitor for our son and it became the class's favorite monitor. Do you work outside the home? If not, you could bring it in before school just on computer days--once you have the driver that comes with the monitor installed, it is plug and play. Then bring it home for the football games. I used to think it was the stress of school as a factor, but at least for our son, it was just the CRT screens. If they only teach typing at school, you could get the Alphasmart for that time--I think the cheapest is $100. It all depends on the teacher and the school. Our elementary school was great, but our middle school is much bigger and maybe more accommodating. I had the same reaction to Irlen--my son doesn't have learning issues either. As I said in my second post to you, since it is sunlight reflecting vs just the brightness of the sun, it may not be Irlen afterall. Though Helen Irlen told me they don't have to have learning issues to have Irlen, my understanding from her was that there was generally a sensitivity to light in general, e.g. when they first walked outside. I haven't ruled it out, but since avoiding the flicker solves the problem, like you I am going with what works. By the way, we just raised my son's magnesium dose due to his deficiency and he said he was nauseous. We also raised his capryllic acid, so not sure the culprit. In any case our doctor said that if you raise the dose do it slowly as it can cause diahrea (I just read nausea also). Also, I read that too much magnesium without some offseting calcium can cause a calcium deficiency. We were giving 125 mg and moved it to 250 mg a day. I will keep you posted in a couple of weeks as we experiment (I will cut both out and add only 1 in. I did this in the first place, but now my son says he has been nauseous for a time and never complained, bummer! I understand what you are saying about staying with what works and not spending more time on it. I did just 'no screens' (except LCD) for my son from age 8 to 10 (with some trial and error on the screens) and only started looking for ways to 'cure' the problem due to my fear of his middle school not being cooperative. At this point, fortunately our DAN doctor wrote us a note for middle school--that alone was worth the cost of the visit. Unlike his elementary school which just followed my instruction (I had to sign some standard permission for him to even use the computer and I signed it his new middle school seemed unwilling to cooperate, but when I mentioned a doctor's note they completely changed. Now the negotiation is WHAT they will do, not whether they will do it. Soon enough, LCD's will replace CRTs and we will have 100 hz TV's and all this will be a non-issue...I hope! Good luck with the school and let us know what you work out. Claire

Hi Ann Marie, I forgot to mention that the sites on flicker sensitivity specifically call out light reflecting off water as a trigger. Again, they only discuss photosensitive epilepsy (rare) and migraines (more common), but it appears to be the same trigger for tics for some kids with tic syndromes. If it is that kind of reflective glare off water vs just going out into the sunlight, then it might not be an Irlen issue after all, but still in the 'flicker' category, in which case sunglasses may well be the best approach. Claire