Friends of Landau Kleffner Syndrome
Regd. Charity No. 1059499 (UK)
3 Stone Buildings, Lincoln's Inn, London, WC2A 3XL
Tel: 0870 8470707 Fax 01302 752662
Internet: http://www.bobjanet.demon.co.uk/lks/folks.html
E-Mail 101361.2530@compuserve.com
Regd. Charity No. 1059499 (affiliated to Contact a Family) Honorary members: Professor B.G.R. Neville, FRCP, Professor of Paediatric Neurology Professor
R.O. Robinson, FRCP, Professor of Paediatric Neurology Founder member: Vicki Horsewell
FOLKS NEWS
A Letter to FOLKS from Professor Landau.
A Transatlantic Investigation- a parent's view of MSI
FOLKS Educational Questionnaire
A Letter to FOLKS from Professor Landau......
Landau Kleffner Syndrome (or acquired epileptic aphasia) was first described in 1957 in a medical paper by Dr. William Landau, Professor of Neurology at
Washington University in St Louis, and Dr. Frank Kleffner, a speech pathologist of the same. We were pleased to receive the following thought provoking
letter from Professor Landau earlier this year......
".......I was delighted today to discover the existence of your organisation. I am sure that Dr. Kleffner will share my enthusiasm. I learned about FOLKS from
Ms. ........... of Austin, Texas, about whose child I consulted several years ago (she reports that he is doing very well).
As the enclosures indicate, the sad shame of Landau Kleffner is that it carries our names, because there has been no effective research on the subject for almost
half a century!................ I am also concerned about uncontrolled aggressive surgery on LKS children because tissue destruction is irreversible for a condition of
unknown cause and variable prognosis.
Of course, the basic information and emotional support of your mutual communication organisation are important. But shared sorrow and frustration is not a
progressive enterprise.
In spite of all the hopeful case reports and reassurances, the blunt facts are:
1. There is no scientific intelligence about the cause of this condition.
2. There is no scientific evidence that any treatment or medication is more curative than any other, or even none at all.
Because LKS is a rare condition, we need a well-funded highly disciplined, multi-institutional research program, international if possible. The essentials of such
a long term project are the establishment of uniform diagnostic criteria, many well controlled and thorough investigations of possible causes, and most
important for the short term, rigorously controlled studies of medical treatment alternatives.
As its first priority, I hope that FOLKS will accept my challenge: a persistent political and fund raising campaign to establish a proper research program. There
can be no quick fix. It can't be done cheaply. It's only necessary.
Do it!
Yours William M. Landau, M.D.
Discussion: Its impossible to disagree with Professor Landau that more effective long term research is needed into LKS and research of the kind which
employs vigorous effort into causes and treatment rather than mere clinical observation. Should there be aggressive intervention, limited intervention or no
intervention in LKS without clear research results from different strategies, or a clear idea of prognosis and an understanding of what causes LKS? Which
intervention is best and for which child and at what stage? Usually science and medicine go hand in hand but scientific certainty isn't always available to those
that practice medicine and so they fall back on an informed judgment and sometimes do so with good results. Yet it remains with the parents of LKS children to
make these extraordinarily difficult decisions, hampered by the lack of consensus within the medical profession and the lack of scientific certainty about
treatment. It would be quite wrong however to assume that we are no further forward than we were in 1957 and although we haven't achieved scientific
certainty, we have a lot of information to help guide parents about what decisions need to be made. Many of the parents in FOLKS have given their children's
data to us and we can see that certainly in the UK it takes an average of almost three years to reach diagnosis by which time the chances of recovery without
residual disability would be remote. Professor Landau's letter provides an opportunity to review how far we have come and how far we still need to go.
Epilepsy was, a disorder known since mankind could first record his experience of it and of those 3,000 years, it is only in the last 150 years or so that there was
any attempt at a "scientific" approach to treatment. Epilepsy is the kind of disorder, particularly in children, that makes one want to try anything and
everything.. ...and they did. Everything from ligatures, blood letting, cauterisation, exorcism. The stigma and burden attached to having a child which would
exhibit the kind of symptoms of LKS must have been enormous. The English novelist Jane Austen had a brother who was epileptic and "deaf" and considered
by late 18th century society to be "simple minded".The best that could be done by a well meaning middle class family was to put the child with carers outside
their own community to be kindly looked after. In the absence of medical understanding, a quiet existence outside an institution was the best that could be done.
Jane Austen learnt a sign language in order to communicate with her brother on visits and in his case at least, non intervention was preferable to the alternatives
and he lived a healthy 72 years.
By 1957 the EEG had only been in use for some 30 years but had not yet reached the sophisticated range that developed through the next forty years with
computerised recording, video telemetry, longer more comprehensive recordings ( particularly sleep ), ambulatory recordings and so on. The range of
anti-convulsants available was relatively restricted, the now familiar names of lamotrigine, vigabatrin, topiramate, have only become available to children
within the last 20 years, some even more recently. Interest in children's epilepsy and particular syndromes was only just beginning. LKS was only given its
official recognition as a separate syndrome by its inclusion in the International Classification of Epileptic Syndromes in 1985. In that context the paper of
Professor Landau and Dr. Kleffner makes interesting reading. It consists of a very useful and detailed description of six children all from the Central Deaf
Institute in St. Louis. Dr. Kleffner was apparently surprised that Professor Landau was not aware of this group of children within the Institute who had early
loss of language (mainly receptive), associated with epilepsy but who had good auditory perception. All the children had seizures. The severity of the EEG
abnormalities did tend to correspond with the severity of the language disturbance, being usually bilateral in the temporal lobes. It was suggested that the
persistent epileptic discharges were responsible for preventing the language areas from functioning. So LKS was born from the description of this small group
of children gathered in one place and a diagnosis of "classic" LKS became dependent upon the characteristics of this small group.
What did happen in the next 43 years? There have been a lot of publications, some studies, some case reports on individual cases or small groups of children
nearly all of which conclude that more research is required. LKS seems to have be a syndrome which provided clues to other more common disorders. From the
1970s and 1980s we had the description of ESES (Electrical Status Epilepticus in Sleep) or CSWS ( Continuous Spike and Wave ) described by Tassinari,
Beaumanoir, Deonna and others. The persistent spike and wave discharges described were found to be the cause of severe neurological impairments in children.
LKS and CSWS could then be seen as parts of a spectrum of functional disorders of childhood with an abnormal EEG. Various small scale studies tended to
show that recovery could occur but rarely if left more than a year and then severe linguistic lifelong handicap was a very common result. More recently in the
1980s and 1990s came the other important recognition of the larger group of children who undergo an autistic regression early in their development but who
have an increased incidence of an abnormal EEG similar to that found in LKS. The work of Tuchman and Rapin in the United States with large scale EEG
studies and indeed of the newer studies by MEG consistently demonstrated some neurophysiological similarities (and differences) between the conditions.
Surgery - there is no doubt that Multiple Subpial Transection remains experimental, not in the sense that so much more needs to be learnt about the technique
but more needs to be learnt about which child can benefit. In 1995 Professor Frank Morrell published the first series of 14 LKS children who underwent MST
at Chicago. He suggested that MST can be an effective therapy for children with LKS but was the first to say that not every child with a severe form of LKS
may benefit from this surgery as they were only at the beginning of the road in understanding the pathophysiological mechanisms of LKS. and that further work
was needed to refine the selection criteria for the right surgical candidate. There were some markers for success, - a clear unilateral focus and steroid sensitivity.
It is disappointing that since that time there have been so many surgeries but so little has been fully reported. The results of the joint MST study between Great
Ormond Street Hospital and Guys Hospital on 15 children concluded in 1997 are still awaited.
MST is carried out at three hospitals in the UK but is much more widely used in the USA. The work of Dr. Patil in Omaha will be of particular interest in the future. Dr. Patil has been using MST on children with multiple focci, often bilateral and therefore not classic LKS with significant improvement in many that is not purely judged by language recovery but by social, behavioural and developmental gains. It is thought that some of these children are more likely to be subject to regression after surgery but not to the same extent as before and there is no doubt much will be learnt from this work. The growing availability of MST and positive parental reports about benefits suggest that it is an intervention that is here to stay. This is certainly an area where there needs to be much more international joint research and dissemination of knowledge in the professions.
Steroid therapy - long used for children with intractable seizures without certainty about its mechanism. Is it anti inflammatory, anti-convulsant or does it
regulate immune dysfunction?. It is beyond doubt that it has an effect on the EEGs of a significant percentage of LKS children. The problem was maintaining
benefits after removing steroids. Work on pulse dosing of steroids in children with PDD and autistic epileptiform abnormalities by Dr Michael Chez ( reported
in 1998) indicated a significant success in maintaining benefits. The Great Ormond Street study, expected to be published shortly, was a controlled study of 20
children treated with corticosteroids and did show that over half had significant and sustained improvement That is quite a weight of evidence to support a
decision to use this therapy but what of the group who had no benefit? They demand a very close look at the nature of their condition. While these studies are
helpful they don't touch the task of tailoring the remedy to the problem. The excellent study of Dr.Chez on "Serum Autoantibodies to Brain in Landau Kleffner
Variant, Autism, and other Neurologic Disorders" in 1999 approached that problem and further work along these lines would be invaluable.
Behaviour - tucked away in the 1957 paper is a sad little fact - that before diagnosis one family underwent psychotherapy because of their child's apparent
"emotional block" soon after her loss of language. If we still live at all in the dark ages with LKS it is in the failure to investigate adequately the many
neuropsychiatric problems that can beset children and then to dismiss them with an inappropriate label. Getting the label wrong results in a failure to alleviate
intense suffering or treat it as an emergency. Behavioural disturbance has been consistently recorded from the outset but little else. The psychiatric description
of some of the LKS children in 1957 was and remains very accurate - " The behaviour would suggest psychogenic regression but its severity would equal
childhood schizophrenia while the retention of warm affect is against that diagnosis". What progress have we made in diagnosing, understanding and treating
this problem? Today we may be less likely to face the "emotional block" diagnosis than the all embracing " behavioural problem" " with support from negative
readings of scalp EEGs that may never fathom unilateral epileptic status or intermittent seizures from deep within the temporal lobe. Is enough care taken to
examine the periods of aggression and loss of self control when there hasn't been a seizure for some time but which may be related to it? In too many cases it is
the parents alone who deal with the anxiety, the depression, the drug toxicity, the psychosis. This difficult area in children cries out for research on a scientific
rather than an observational basis.
So here we are in the Millenium, and since 1957 we have improved EEG, SPECT, PET. MRI, functional MRI, MEG, MSI, MST, improved surgical techniques
a vast array of new anti- convulsant, a better understanding of epilepsy generally and we still can't be as effective as we should for some children. Yet we must
be better placed to carry out the multi institutional research into causation that Professor Landau rightly calls for. To have medical centres with a narrow interest
eg. - not interested in auto immunity when a particular child has strong signs of autoimmune dysfunction, or one not interested in surgery when all other
therapies have failed, and so on results in "doctor shopping" because parents need to address all the issues within the brief span of childhood irrespective of the
particular interests of neurological centres. It adds strain and cost to families to deal with issues this way.
There is a tendency amongst professionals to think of organisations such as FOLKS as groups for emotional support and ancillary issues. Such benefits are
incidental. Two of the three fundamental purposes for which FOLKS was established are to support research and to advance the education of the medical
profession and other professions. The practical advantage to FOLKS of all your support and all the data we hold on your behalf is that we have become a
combination of "national and international doctors waiting rooms" where families give each other information regularly of every aspect of LKS and related
disorders. Of course it is not scientific but our children undoubtedly progress because of it.
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Magnetoencephalography and LKS
The development of neurophysiological investigations is probably the most important single reason for the better understanding of epilepsy that we now have
and with it more rational and accurate treatment. There are a number of different ways now available to us for of looking for abnormalities within the brain - by
looking at the structure itself with MRI, at blood flow and metabolism with SPECT and PET studies and the recording of electrical discharges by the familiar
EEG. One of the newest technologies available to neuroscience is MEG (magnetoencephalography) and MSI (Magnetic Source Imaging) and one that has great
significance for children with LKS and autistic regression.
What is MEG/MSI? - neuronal activity within the brain produces electrical signals which we would normally read from electrodes attached to the scalp. That
level of current is a billion times smaller than that generated by a light bulb and works in an incredibly small fraction of a second of time. The skull acts as a
barrier and it isn't always possible to make very precise inferences about the location of these signals. However the electrical signals from neuronal activity
produce a very weak magnetic field which comes out of the skull and circles back in. MEG is the method by which these magnetic fields can be detected and
recorded by very sensitive sensors. With the use of computers and mathematical formulae that data can be transposed onto MRI images and produces a picture
showing very precise areas of epileptic activity. As MEG works in thousandths of a second, coming closer to the speed at which the brain functions it is
possible not only to locate seizure source but the order in which seizures are activated. MEG has the advantage of being able to record its data with minimal
distortion from the skull but it does not replace the EEG, rather it should be seen as providing full but complimentary data. MEG is most sensitive to the signals
generated from cell running parallel to the skull but the EEG is most effective from cells to the perpendicular. Comparisons with the two methods run
simultaneously sometimes show activity apparent on the MEG and not the EEG and vice versa. In LKS activity is typically from the area in and around the peri
sylvian region which particularly lends itself to MEG recording. To have an EEG conducted simultaneously with MEG and then superimposed onto MRI is to
obtain the most fully informative picture possible without directly invading the brain.
The development of MEG - in 1968 Dr. David Cohen pioneered MEG in a research setting and it remained for some years an expensive piece of scientific
research equipment. MEG facilities are still mainly located in research settings all over the world as they require an expensive sheltered environment in a
shielded room and they have high running costs. Scientists interested in researching every aspect of brain function and development needed MEG - foetal
development, cardiology, auditory processing, visual processing, epilepsy, vascular abnormalities, tumours, trauma injuries, dyslexia and many other processes
and disorders. Some of the early MEGs were not suitable for clinical use (being half head scanners only) but epilepsy was a very obvious subject for MEG and
it was clearly going to be useful in epilepsy surgery where location of function and of seizure source is vital for limiting damage and for success. Interestingly,
in the latter part of Frank Morrells MST research he also was using MEG data. Now every major neurosurgical centre in the U.S. uses MEG data for pre
surgical evaluation and as an aid in surgery itself, as is the case in Helsinki which is the home of much research on the MEG. In contrast no MST surgery has
yet been conducted in the UK with the benefit of MEG.
Throughout the 1990's there were a number of papers published that were consistently indicating how reliable and useful MEG was in surgery. Dr Patau et al in
Helsinki found that MEG data considerably influenced the planning of surgery and was useful for focussing MST. Research across America echoed the same
message when studying children and adults having epilepsy surgery, that MEG was more accurate than the EEG in localising the source of epilepsy particularly
interictal (between seizure) localisation.
In October 1999 FOLKS NEWS we were able to publish the abstract of a study carried out at the University of Utah by Dr Lewine et al where MEG was shown
to be significantly more successful in detecting epileptiform abnormalities in children with autistic spectrum disorders than even the 24 hour EEG as a
preliminary study into the study of autistic spectrum disorders.
MEG and the U.K. - on March 17th, 2000, the Welcome Trust laboratory for MEG studies was officially opened at the Vision Sciences Department of Aston
University. This facility had always offered neurophysiological investigations such as ambulatory EEGs but the purchase of a 151 channel whole head MEG
scanner with funding from the Welcome Trust was seen primarily as a research tool. However we were very grateful to Professor Graham Harding who is
director of the department for indicating that this facility would be made available for some clinical use and could be available upon an NHS referral and
purchase of appropriate services ( sedation). Hopefully it will go some way to redressing the huge imbalance between the UK and the United States in its use of
MEG and MSI for LKS children.
For the future - while the UK lacks woefully behind the major European countries and the U.S. in its use of MEGS for research it would seem very likely that
the technology will see much greater clinical use. We were interested to hear from the Dr. Gary Green of the Department of Physiology at Newcastle University
of the proposals made by a consortium of neurologists and neuroscientsts for a MEG scanner, particularly to look at auditory processing. We hope that
"Brainwave" will quickly achieve the funding for their project and wish it every success.
Go to Contents
A Transatlantic Investigation - A Parents View of Magnetic Source Imaging - by Robert Hantusch
Our son Richard is now 8½ years old. Since he was diagnosed first with epilepsy and then with LKS at the age of 4 he has had almost every type of
neurological test that the UK can provide (numerous EEGs, two MRIs, SPECT). We want to explain what it was that made our family decide to cross the
Atlantic for Magnetic Source Imaging ("MSI"), how it helped us, and how very grateful we will always be to the American families who provided us with
information about it.
Richard had MST surgery at Great Ormond Street Hospital just before he was 6. This helped his language development, but after surgery his seizures increased
and he experienced real problems with behaviour and learning. Just before Christmas 1999 we were told that while further surgery remained a possibility, it
would require a definite epileptic source to be identified and that invasive brain monitoring would probably be required before any decision to undertake such
surgery could be made. We were not thrilled by the prospect of having to put Richard through a further surgical procedure in order to determine if another
operation was possible and so we looked for an alternative.
Earlier in 1999 some American friends had sent us, and we had viewed with interest, a 2 hour videotape of a talk about MSI and its benefits that had been given
to a gathering of Californian parents (including parents of LKS children) by Dr. Jeff Lewine (then of the University of Utah's Center for Advanced Medical
Technologies in Salt Lake City). Having viewed the Video again, and read the full text of Dr. Lewine's research paper that had appeared in Pediatrics in
September 1999, we E-Mailed Dr. Lewine to ask if it would be possible for Richard to have MSI testing. After faxing over some of Richard's medical notes Dr.
Lewine responded that he thought it could help and the good news was that the Salt Lake Facility was at that time willing to undertake MSI testing on anyone
who could pay. We therefore decided to take our holidays early this year in Salt Lake City.
Accordingly we obtained a letter of referral and more of Richard's medical records ch. As we were required to pay in advance as foreign patients, there was a
20% discount on the usual all-in cost of $7,500 so there was only $ 6,000 to pay for the testing (about £3,800 at the then rates of exchange). There then
followed a period of intensive use of the computer to find and book air tickets and hotel accommodation in Salt Lake (and several days of effort to coax
Richard into a photo-booth to have his passport photograph taken !).
An unexpected difficulty was travel insurance. The UK Department of Health and the Passport Office both strongly advise for very good reason that no one
should visit the USA without adequate medical and travel insurance. However, what they do not do is tell you where to obtain such insurance for an epileptic
child who has had emergency hospital admissions and changed his drug dosages in the previous year, and is going abroad for medical tests. The reason they do
not is that it is in fact impossible to obtain any such insurance cover for a trip to the USA (Europe is different) At first no one was willing to offer any insurance
at all for Richard; but after 3 days on the telephone I eventually arranged comprehensive cover for the rest of the family and limited cover for Richard for all
risks except epilepsy/anything related to the MSI. It seemed unbelievable that no insurer at all, not even the Lloyds market and specialist brokers who write
cover for such one-off risks as sportsman's limbs and film stars' bodies, were willing even to consider at offering any insurance to cover Richard for risks
related to epilepsy on any terms.
The family (the two of us, Richard and his younger sister) flew out on 17th March, and 23 hours after waking at home in England we reached our hotel in Salt
Lake City. There was 13½ hrs of flying in all. The first 10 hrs from London to Dallas went far better than expected.. The 3½ hrs from Dallas to Salt Lake City
was not quite so easy: it was a very crowded flight - it seems everyone wanted to fly to Salt Lake that Friday night - and not all of our fellow passengers were
child-friendly but Richard's behaviour was exemplary.
Jet lag hit Richard with a vengeance and left him very epileptic for the first 24 hours with occasional out-breaks for the remainder of our stay in Salt Lake. It
made him very, very anxious and depressed. Indeed it took over a month after our return for the full epileptic effects of the jet-lag to recede. However, we still
managed to see some of the sights in and around Salt Lake City, and Richard enjoyed the facilities of the Hotel including a 24hour a day swimming pool.
C.A.M.T. was set in the beautiful Wasatch Hills. It wasn't a hospital and at first it was hard to feel at home in the research, computer based, non hospital setting
although we had the services of a very experienced and sympathetic team of anaethetist, nurse, and EEG technicians. They could not have been more helpful
and it was difficult not to make comparisons with the over stretched NHS who never gave much thought about how far you travel, or whether you need to eat or
sleep or wash or deal with other children during hospital stays. At C.A.M.T. they gave every thought. They were in the course of a research project of MEG
studies on 500 ASD children so Richard's reluctance to be there didn't cut any ice. Richard resisted the sedation as violently as he knew how but they were not
put off. They were very careful and competent and deeply aware of the issues that surround the handling of LKS and autistic children. We asked for them to
take a blood sample while Richard was sedated. They gave us a list of tests which could be done - so we opted for the IG levels and the measles virus. They
were a little surprised to find that this had never been done.
The scan lasted about an hour. It took place in a special sealed room but Richard was visible to us throughout and we were invited to watch whatever we
wanted without being in anyone's way. He was monitored throughout very carefully. The MEG scan was conducted simultaneously with a 32 lead EEG. We sat
by the computer screens with Dr. Lewine and we learnt more about Richard's epilepsy than we had ever known before. Dr. Lewine had taken time before the
testing started to talk us through both Richard's history and the entire testing process. During the testing Dr. Lewine also showed us in real time what being
revealed on a bank of multiple computer monitors. Seeing spikes and waves from the MEG that were not being picked up at all on the EEG from the same area
of Richard's brain at the same time was a real eye-opener. At that point the major thing to come out of the MEG was the fact that there was indeed still spiking
from Richard's sylvian fissure - something that the MEG machine is particularly able to detect - and that it was adjacent to the site of the MST that Richard had
had 2 ½ years earlier. This was something that repeated EEG's here in the UK had been unable to demonstrate and for us this fully justified all the costs and
difficulties of the entire trip
Another part of the MSI testing is an MRI test, as the results of the MEG and EEG elements of the test are superimposed on 3D images of the brain produced
by computer from the MRI results in order to aid in their analysis and help to localise any epileptic sources that are revealed. However, in Richard's case the
MRI also revealed a problem that it later transpired had been missed 18 months previously when his last UK MRI films had been reviewed.
Two days after the testing we returned home extremely weary but considerably better informed about Richard's condition than we ever had been in the past; and
we later learned even more from the full report on the testing that we and Richard's UK Doctors all received about 3 weeks later. Was it worth the considerable
cost and expense? We certainly think so. It is only a shame that we could not have arranged such testing for Richard earlier than we did; and that more children
like Richard do not at present have the option to undergo such testing both at the stage of diagnosis, and prior to any surgical intervention.
Two postscripts must be added to this report. First, and sadly, the MEG facility at Salt Lake closed at the end of June. The cost of running the MEG facility at
Salt Lake ultimately proved to be more than the University of Utah and the Utah Health Department were themselves able or willing to continue to fund
(apparently it took only a few paying referrals such as Richard each week and most of its throughput was on a research basis which had to be funded internally).
Second, and on a more positive note, at the time we booked Richard's MSI testing in Salt Lake there was no equivalent UK facility. However, on the very day
we flew out to Salt Lake a Wellcome Trust funded MSI facility (albeit using a less powerful MEG machine than the one at Salt Lake) opened at the University
at Aston, and while no LKS children have yet been examined at this facility we understand that it is possible that it could now take limited clinical NHS
referrals including children such as Richard. It would nice to think that in the future our children won't have to cross the Atlantic to take advantage of MEG technology.
Go to Contents
FOLKS DAY 2000
Our annual FOLKS DAY was held on June 3rd at St. Elizabeth's School for children with complex learning difficulties. Set in the quiet green
Hertfordshirecountryside the school made a splendid venue and FOLKS are grateful to all at St. Elizabeths not only for their warm welcome but for all their
hard work and generosity before, during and after the conference. Their keen interest in children with epilepsy was very supportive and made the organisation
of the day so easy.
The Essex Leisure Team provided activities throughout the day which challenged the children to take part. Twenty four LKS children and their brothers and
sisters took part in abseiling and archery, inflatable mazes and slides amongst other things. Wizard Wonky also worked very hard all day to entertain and amuse
the children with balloons and magic. It is not possible to mention by name all those wonderful people, the carers who took on some pretty demanding
challenges and met them so well - the staff from St. Elizabeths. IPOP and the Red Cross as well as those from John Horniman School and others who enabled
all our very different children to be safe and enjoy the day.
We were delighted to have Barbara Wilson with us who did so much to make the day possible in raising £1,400 by running the London Marathon and collecting
sponsorship. Barbara undertook her first London Marathon in April with an injury to her ankle but as so much depended upon her she went ahead and managed
to complete the course notwithstanding the pain. It was a real act of determination and generosity. Thank you Barbara. In addition Maggie McMahon, her
husband David, son Christopher and their daughter Melissa were able to join us on the day. Maggie took on a different but equally daunting challenge at the
beginning of the year to raise funds for the children on FOLKS DAY by organising the very successful "Making Magic" Event.
One of the problems with FOLKS DAY is that we have to put into a short time all that we want to do - the chance to catch up with old friends, the opportunity
to meet new members ( and we do appreciate the effort that some of the families made to get to FOLKS DAY ), the need to have an Agenda with something for
everybody and the inevitable AGM. Amidst it all John and Jackie Beagley organised a raffle which raised a splendid £198 for FOLKS. They both retire from
the Committee this year and we are very grateful to them both for their work for FOLKS over the years. The AGM saw the election of a new Chairman, Fiona
Kettell who is now the longest serving member of the committee as well as the telephone Helpline. and we will undoubtedly benefit from her experience. Our
thanks to Steve King for numerous services to FOLKS this year but particularly for sorting out the accounts which for the first time were subject to ( and
passed!) independent external examination. FOLKS are indebted also to Committee members Mina and Bharat Patel for organising the recording of the day.
Parliament and Paediatric Epilepsy? - This Conference was one with a difference. We opened with a look at wider issues when Stephen Twigg, the Member
of Parliament for Enfield South and Chairman of the All Parliamentary Committee on Epilepsy spoke about his work for people with epilepsy. In politics as in
life, personal experience is the strongest of forces behind the ability to recognise and remedy inadequacies and injustices and there is no doubt that Stephen
Twigg is a powerful advocate. Mr. Twigg experienced bereavement from sudden death in epilepsy in his own family as well as in his constituency work but
then found a depth of ignorance about epilepsy across politics and government. He formed or revived an All Parliamentary Group of some 50/60 members with
an interest in Health Service issues, special needs, discrimination and education. The group provides a place for organisations such as ours to put their point of
view. To make a difference is an enormous task - to use public debate, to lobby government departments on so many issues is demanding work. FOLKS is
grateful to Mr. Twigg for his invitation to FOLKS to address the All Parliamentary Committee on the much neglected problems of paediatric epilepsy. His
advice is sound - if you want to make a difference you can write to your MP - you can get in touch and raise awareness.
"Landau Kleffner Syndrome finds the cracks if not the chasms in the system...........the array of problems in LKS is beyond the Health Service as
presently constituted" - those statements very accurately reflect the experiences of so many of our families within FOLKS. LKS is hard enough but the
shortcomings of the systems, medical, educational and social undoubtedly adds very significantly to that hardship. It was helpful that this was acknowledged by
Professor Brian Neville of Great Ormond Street Hospital in his analysis on the organisation of services for LKS children as they exist and as they should be. It
was a great pleasure to welcome Professor Neville back to FOLKS Day after his absence last year with such clear ideas of what the LKS child needs such as
more widespread child epilepsy services within child development centres, more specialist child neurology centres, a fully equipped neuroscience service for
multiple investigation at tertiary level, more multi disciplinary assessments, more paediatric occupational therapist and a child psychiatry service geared to the
complexities of LKS or at least paediatricians trained in behavioural disorders.
LKS and Magnetoencephalography (MEG) - we are grateful to Professor Neville for arranging for Dr. Ritva Patau to speak at FOLKS DAY at short notice.
Dr. Patau is a paediatric neurologist with a special interest in epilepsy who works at the Low Temperature Laboratory and at the Central Hospital in Helsinki
and has researched the use of MEG studies in LKS. Dr. Patau gave a very informative lecture on how MEG works in a different but complimentary way to EEG
to identify the source of epileptic activity, its propagation and how it has helped in Finland in evaluating children already selected for surgery by by drawing a
neurological map for neurosurgeons. All children that have had MST surgery in Finland and those in the last few years in the United States have had the benefit
of MEG data available to the neurosurgeon, a stark contrast to the United Kingdom where no child has yet had such point of reference available to them. We
have to salute the Finnish technicians ability to achieve MEGs on LKS children without sedation and their persistence as it can apparently take several attempts.
Even with the MEG data Dr Patau was of the view that we still don't know which child would benefit from surgery and that it remains an experimental
technique in terms of assessing outcome.
FOLKS are indebted to Dr. Andrew Holton, Consultant Paediatrican of Leicester Royal Infirmary for his lecture. Dr. Holton has an undoubted gift for helping
us understand so much of what is never explained by the medical profession to families and so we have reproduced his lecture below .
"Helping Your LKS Children to Learn" was the title of the a lecture given by Victoria Burch, Neuropsychologist of St. Piers, Lingfield, Surrey . This was a
difficult subject to fit in a short space of time but many parents and teachers will find it helpful to think about why it is so difficult for our children with LKS to
learn. Victoria gave a clear explanation for the reasons for the difficulties and brief outlines of helpful techniques. The epicentre of LKS is usually around the
perisylvian fissure where incoming auditory information is understood. In the centre of the temporal lobes there are structures which are essential for learning
and memory. The distance between the epicentre of epileptic activity in LKS and areas for language and memory are very close. One of the things that happens,
not just in LKS but in severe epilepsy of temporal lobe origin, is that children find it very, very difficult to learn new information. The reason for that is because
of epileptic disruption to the memory areas. There are also areas responsible for memory in the frontal lobes and children that have spread of epileptic activity
further forward will have difficulty in new learning. Frequently the epileptic activity doesn't stay in the temporal lobes but spreads and it can spread, in fact,
throughout the cortex on and off and disrupts learning in different modalities, it can disrupt vision, it can disrupt attention level mechanisms, it can disrupt the
child's ability to relate to the world. If processing is interfered with then learning is going to be interfered with. A form of epileptic activity very common in
LKS, (in fact many clinicians would say that the diagnosis of LKS is dependent upon this type of epileptic activity) is ESES, (electrical status epilepticus in
slow wave sleep) or under its other name CSWS. The important thing about this kind of seizure activity that most children with LKS have, sometimes for
extended periods of time, is that it disrupts the processing of recent experience. So that when children wake up in the morning, even if the EEG is much better,
that child is going to have enormous difficulty in learning. Victoria went on to deal with the problems of attention deficit, hyperactivity, withdrawal and the
enormous problem of anxiety. Children who are aware that their skills fluctuate without them being able to do anything about it can become exceedingly
anxious when they are faced with tasks that they have previously failed or tasks that they have succeeded at but then they wake up worrying why they can't do
it. The anxiety causes an exacerbation of the attentional difficulties.
So what are the building blocks for helping the LKS child to learn?. - an EEG pattern that allows learning, adequate sleep, adequate attention control and an
ability to relate to the world and to people, the ability to copy , to be and fairly calm and alert, not hyper-alert, to have a good system of communication. Finally
the Individual Education Plan for where the child is now. That is something that schools and special schools in particular should be good at but aren't
necessarily very good in the case of LKS. The reason for it is that most education programs are based on the premise that the child has a developmental
disability and with lots and lots of practice that child is going to acquire skills and get better. If the child has severe LKS, is an acute phase and has lots and lots
of epileptic activity, that isn't going to work. Teachers can get very frustrated when children can do something one day and not the next. The parents of LKS
children frequently know far more about LKS , the basis of the disorder and how it affects children than the teachers do. It is often up to parents to educate the
teacher or the speech therapist or whatever professionals are working with the child about this disorder which fluctuates. Most educational professionals are not
used to working with such fluctuations. Victoria covered a number of different approaches such as incidental learning, intensive interaction and non directed
play and we hope that we will be able to reproduce the full text of her lecture in due course.
On another more practical note we were able to benefit from hearing Mary Jennings, Senior Speech and Language Therapist of the John Horniman School,
Worthing on Paget Gorman signing and cued articulation. Mary is a member of FOLKS and has built a some considerable experience of working with LKS
children and their varying speech and language deficits. Gilda Deterding a Senior Speech and Language Therapist was able to assist us by tackling the subject
of Picture Exchange Communication System in an afternoon workshop which was of great help.
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FOLKS AT THE HOUSE OF COMMONS - from Fiona Kettell
Working on the FOLKS Helpline and also through my own personal experience, I am sometimes painfully aware of how the systems that should be helping our
children, ie health, speech and language therapy, education, behaviour intervention and social services, etc. are frequently failing to meet our children's quite
complex needs. Although as individuals many of us have tried to tackle these problems at the local level, we believe that government intervention is necessary.
It is almost half a century since Landau and Kleffner identified our children's problems as being part of a syndrome and yet lack of funding for research into
LKS in particular and epilepsy more generally means that we still do not know its causes. On average it is taking three years for our children to get a diagnosis
of LKS. In a condition where early diagnosis and treatment may effect the outcome, this is disastrous. Long waiting times for speech and language assessments
delays referrals to community paediatricians and neurologists. The lengthy educational assessment and statementing process is not designed to take account of
our children's sometimes rapidly fluctuating needs. Behaviour intervention teams who may not always understand the impact that LKS has at a neurological
level on behaviour, often leaves parents with feelings of failure, frustration and anger. Hard pushed Social Services are often unable to find the resources to
help families who desperately need their support. These frustrations are not only shared by the FOLKS Committee and families but also by professionals who
genuinely want to help our children. It took one of these professionals to set out a challenge to FOLKS to become politically active for me to set pen to paper
and write to my local MP Stephen Twigg who heads the All Party Group on Epilepsy. In reply I was invited to tea in the House of Commons to discuss these
issues further and to explain the work of FOLKS and the aims we hope to achieve.
Having a personal connection to epilepsy himself, Stephen Twigg was very interested in both our problems and the work we are doing and expressed interest in
meeting with our medical advisors to explain the position of Parliament and Epilepsy to our parents at our FOLKS Day 2000. His address was well received
with some very pertinent questions from both families and visiting professionals. During his talk he acknowledged the "breadth and depth of ignorance
surrounding epilepsy" and stated that he saw the All Party Group on Epilepsy as being "an opportunity for the organisations who do work in the epilepsy field
to have a direct imput, a direct connection into Parliament". He has welcomed FOLKS and some of our "experts" to speak to the All Party Group at some point.
This is an opportunity that we certainly intend to take.
FOLKS EDUCATIONAL QUESTIONNAIRE (U.K.) - Liz Boulton
Many thanks to all those parents who completed the educational questionnaire which was sent out in May. To date we have received a total of 32 responses (out
of 112 sent out) including 28 completed questionnaires - less than a third response rate!. We would really welcome more! If you haven't yet completed a
questionnaire and are willing to do so, please please do so now! The more information we have, the more we will be able to help LKS parents now and in the
future. If you haven't received a copy of the questionnaire or if you have any queries, please contact Liz Boulton on 020 8907 3797 (not between 4.30pm and
8.30pm), e-mail her at Liz@DataPerceptions.co.uk or write to her c/o Folks, 3. Stone Buildings, ( Ground Floor), Lincoln's Inn, London. WC2A 3XL
Perhaps surprisingly, the questionnaires completed to date show that the majority of parents are satisfied/very satisfied with their child's current school. This
despite the wide variety in type of school attended and each child's abilities. Only two respondents said that they were not satisfied/very satisfied.
Some parents did express some reservations. They felt they had a limited choice of school within their locality if they were not prepared to consider a
residential school. As a result, some compromises had therefore been made. Several parents commented on the importance of the Headteacher and the attitude
of the school to their child. Those which were flexible and willing to listen and learn about LKS obviously came out better.
Less surprisingly, satisfaction levels with Local Education Authorities were not so high. Many commented on the slowness with which LEAs responded and
reacted and the need to continually pester LEAs to get results. The schools which were suggested by them were often inappropriate. Some parents commented
on the need to keep detailed records of all conversations with the LEA and two parents independently accused one LEA of being deceitful! At the same time,
another respondent indicated a high level of satisfaction with the same LEA.
If any parent would like any information about a specific school or LEA, please feel free to contact Liz (details above) to see if we have any information
available. In the meantime, please keep sending those questionnaires in and we will provide further feedback in future issues of FOLKS NEWS! PLEASE
HELP US BY RETURNING THE COMPLETED QUESTIONNAIRE TO:Liz Boulton, 12 Winchfield Close, Kenton, Harrow HA3 ODT
Parents On Line:
Much has been written by professionals about how families cope with the strain of bringing up epileptic children. Perhaps much more could be usefully written
by families about how well professionals cope with the families. There is a range of terms to describe our coping mechanisms -"repression" - "reaction
formation" - "rationalization" - that one has to wonder when jargon will end and common sense will prevail. And yes - there is possibly one for all of us too -
"sublimation" - a term to describe the deflection of grief and pain into creative outlets such as those found in helpful organisations. Whether it is right or not
that we are all using our sublimated energies, our universal experience within FOLKS has been that LKS produces independent, strong-minded, caring and
generous families willing to use their time and their skill in helping in many ways and in spite of the demands of LKS children. One of those ways is shown by
the parents who are using computer skills to help - the "Parents On Line".
Debbie Barber - is a mother of a little girl with epileptic dysphasia and LKS Variant in the U.K. Debbie is a long standing member of FOLKS and we were
very grateful when she set up the LKS chat club for FOLKS.
"For those of us who have access to the Internet we all know how valuable it is in finding information on the web ( after all that's how I found FOLKS!) And
exchanging e-mails with other parents. There is another element which can be very useful, a life saver; it enables people to come together to talk in chat groups.
In view of this I decided to set up an yahoo Club fro FOLKS with a chatroom facility. At the moment there are 16 members and a few of us chat regularly
exchanging day to day news and getting support and advice that only another parent with a child with LKS can give. We would like lots of other parents to join
our "virtual coffee mornings" and have a regular chat time one evening a week. There is a message board and a photo album, grab a cuppa and please visit the
site and have a look. If you would like further information please contact me through the club, you will find us at http://clubs.yahoo.com/clubs/lkssupportgroup
Edna Bizzell (U.S.A) - http://sites.netscape.net/stutchr Edna of FOLKS LIST is a teacher and mother of Rebecca who has Landau Kleffner Syndrome. The
site is dedicated to Rebecca and contains her story together with resources on T.E.A.C.H. and early intervention programs.
"When Rebecca stopped speaking, we felt very frightened and very alone. Searching for answers to the why and wherefore became our personal obsession, if
you will. We ran into a lot of roadblocks along the way. As much as we wanted answers and refused to give up, most professionals could offer little in the way
of answers to our questions. Indeed, most doctors really did not know what was going on.
The greatest lesson I discovered was that parents know their children better than anyone. One of the persons who examined Rebecca did not know what was
wrong, but suggested that she "behaved like an autistic child...but was too social". That perception turned out to be the final piece of information I needed to get
Rebecca tested for Landau Kleffner Syndrome, having already ruled out tumours and stroke. With that assertion, I looked at everything I could find about
autism and found the TEACCH website which listed many autism spectrum disorders. There, I read each until I came to LKS. While reading, I told my
husband, "My goodness, this is Rebecca!" Trusting what I knew about my daughter, I became aggressive in finding someone to give her an EEG to confirm my suspicions.
Before we had the actual test I developed my website. I wanted to give other people my personal experience with a very rare disorder. I have received a wealth
of email from people all over the world, who need information and need to know they are not alone. I hope that it does that. I pray more parents with rare
disorders might do the same. We are not alone!
Leslie Martin (U.S.) http://home.att.net/~jimlesmartin/index.html - Leslie ( known to many on FOLKSLIST ) created a beautiful website dedicated to and
about her daughter Kayla. Kayla suffers from LKS/CSWS and her personal story, as it was and as it develops introduces the site. The other parts contain useful
information on the conditions of ESES, LKS, LKSV and autistic disorders and on research and treatment. There are numerous links to useful organisations and
other information on eg..the ketogenic diet and VNS.
"When we bought the computer for Fathers's Day in 1997, I didn't know it would have become such a big part of my life and a Godsend. Kayla had her first
seizure in December 1997 and in March the following year I decided to take some time and create a web site about her. Never did I think I would get the
response I have got from it. It has evolved over time, just as Kayla has evolved or should I say regressed.
I learned a lot through other email lists and web sites. After a year of being on some email support groups and having discovered that Kayla had more than just
one epilepsy, her first diagnosis was Benign Occipital epilepsy in December 1997 and it wouldn't be until after her regression and finally getting a second
opinion in July 1999, that I discovered she had ESES ( also known as CSWS or Continuous Spike and Waves during Slow Wave Sleep). The incredible thing
was she had it during the day but to less of an extent. We went through all the protocols for treating CSWS and to no avail wound up with problems and no
results . We are in the waiting game of trying new meds. and hoping something will work for us.
I created a new support group at http://www.egroups.com/group/RareEpilepsySyndromes in order to help others with a more rare diagnosis. I have about 23
members right now, it is a kind of a quiet email list but I am there for the moms that need it. I know how difficult raising a disabled child is and I want to be
there for others that have difficulties finding information. I had called Dr. Michael Chez in Illinois asking for information. I retyped this information onto our
web site in order to get the information out to others. ESES/CSWS is so mis-diagnosed when doctors never even see a case in their lifetimes it is so rare. So I
thought that since it was so hard for me to find information for it on the net that I would put it there for others to have also. Why hold back good information
when it is so desperately needed by others. I would do an injustice to Kayla if I didn't give back what I have got from others."
Kay Stammers ( U.S.) - http://trainland.tripod.com/ - "Welcome to beyond Autism - All Children are Exceptional" is the statement that opens Kay' web site.
It is so absolutely packed with information covering every aspect of autism and LKS and epilepsy that its hard to break away. A number of the links are relevant
only to parents in the United States but many are of real practical use for all. It is a divided into four sections, "Favourite Links" - eg. on Communication, on
Education , on Autism, on LKS and seizures, on PECs , diets etc, "Fun Stuff "- a unique collection of on line activities and links for children with and without
disabilities ( a real help in school holidays ), " Abstracts and Articles on medical issues and Late Breaking News" - particularly for US members or if you
generally want to know what is happening elsewhere.
"The main reason I started the site was to provide PECs ( Picture Exchange Communication System) resources. Communication is one of our kids biggest
problems and it can prevent them having so much frustration if they can just find a way to communicate their wants and needs. There were no sites available at
that time with PECs pictures that parents could access and so many of the school districts won't provide communication software for parents to use at home.
The site just sort of took off from there.....
Another reason for starting the site was to have a "one stop"place for parents and professionals that were starting out on autism, LKS and other disabilities to
provide comprehensive resources of information on teaching, methodologies, education and "special " education resources, IEP information, augmentive and
communication assistance with assistive technology information, disability legal information and much more! My latest obsession is the "Late Breaking News"
section that is updated daily.
I remember how frustrating it was trying to find out reputable information on autism, LKS, seizures, IEPs, communication, knowledgeable medical and
education professionals and I wanted to help others avoid some of that and at least have a decent starting point for information resources.
The site has been an obsession for me and very rewarding, I have received nothing but positive feedback on it and I have found that even the school
administrators and personnel are checking it out and passing it on to the parents of their students."
Note:
For those interested in the neurology of LKS and epilepsy see http://emedicine.com/NEURO/topic547.htm
and also http://emedicine.com/NEURO/topic182.htm
(Note that these links used to work but presently claim that these topics are "not yet complete")
"Landau Kleffner Syndrome: A Parent's Guide" - by Richard and Katherine Price.
One of the common early experiences of families who are given a diagnosis of LKS is a feeling of bewilderment and a desperate need for practical clear
information. That need is rarely met. This book written by Katherine and Richard Price of The Australian Landau Kleffner Association is just the book to help
parents understand the complexities quickly, get hold of resources ( Australian) and has numerous suggestions for different strategies. It has the advantage of
being based upon real understanding of what parents need to know and what hey can expect. The cost is $20 Australian and it is available from R. and K. Price,
80 Galston Road, Hornsby, New South Wales, Australia. Congratulations go to Richard and Katherine for all their hard work and especially upon the birth of
their daughter Nehrys..
"Chrissy's Story" - by Jane Gregory
The author of this moving book is a journalist and the subject of her book is Chrissy, her 16 year old daughter. Chrissy experienced the most severe episodes of
tantrums and crying in cyclical bouts throughout most of her childhood. The book demonstrates how impossible it can be for even the most articulate and
literate parent to have such a condition diagnosed. A round of hospital tests produced no result nor did a range of treatments, sedatives, special diets and
alternative medicine. The Park Hospital in Oxford and Great Ormond Street Hospital suggested that Chrissy had "behavioural" problems. After much research
by her mother and continuous battle to get a diagnosis Chrissy was eventually found to be suffering from cyclical depression and epilepsy and only then was she
able to have an effective drug regime. The book is published by Jessica Kingsley ( ISBN 183028746). Jane is also the author of "Bringing Up A Challenging
Child - When Love is not Enough".
Go to Contents
Further from FOLKS
IMPORTANT TO NOTE: Change of Address - FOLKS now have a new postal address to avoid recurring problems with PO boxes changes. When writing
to FOLKS please address mail to:
3 Stone Buildings (ground floor), Lincoln's Inn, London WC2A 3XL
Post sent to the existing PO box address should continue to reach us until February 20001.
FOLKS 2001 - will be on 2nd June, 2001 and will be held again at St Elizabeth's School, Much Hadham, Hertfordshire.
Walking for F.O.L.K.S. - Edna Bizzell of FOLKS LIST and mother of Rebecca ( LKS) is raising awareness of LK.S .in North Carolina. Edna, mother of six,
the youngest of whom is Rebecca and a recently qualified teacher, features in the article "Parents on Line". Not content with this Edna wrote a piece on LKS
which was published in the local paper during the U.S.A's "Autism Awareness" month. In October Edna and her family are going to take part in a "Walk for
Epilepsy" when they will wear T-shirts with FOLKS emblem on the front. It would be wonderful to see the FOLKS logo around North Carolina - hope you all
enjoy the walk.
The FOLKS from California - we were delighted when FOLKS LISTER Peggy Simons, husband Marc and children, Stephen, Rachel and David decided to pay a visit to London in August for some intensive sight seeing. One big problem - Rachel (12) has LKS and is very successfully on the American ketogenic diet but would customs let Peggy import her particular dietary requirements - could she buy cream, butter, oil, cheese with the right percentage of fat? The Ministry of Agriculture, Food and Fisheries was a little surprised by the request to import meat and fish for an epileptic child and some of the manufacturers of mayonnaise didn't quite understand why we needed full fat in a particular brand rather than the fashionable low fat versions. Peggy travels with her computer to calculate Rachel' meals - and one only need to look and talk to Rachel to see that all the effort is so worth while for her. She experienced a considerable improvement in her EEG with the diet and is not taking any anti-convulsants. By the time we met up with the family they had already visited Kensington Palace, Buckingham Palace, the Royal Mews, The Tower of London and Tower Bridge and were heading off to Edinburgh for the Tattoo, without any of the family showing signs of jet lag! Despite their hectic schedule we managed to catch up with them for an afternoon in London and compare experiences. Talking to Peggy and Marc it became very clear - that the problem of delayed diagnosis and getting the right educational support is sadly, as common across the Atlantic as it is here and that awareness of LKS within the medical profession needs to be extended in both countries. Time with them was all too short but we learnt a lot from them all. - from Margaret Hantusch
Fund Raising - One of the problems of a relatively rare disorder like LKS is that the number of members tends to be on the low side but what we lack in
quantity we make up for in quality. There seems to be no end to the enterprise and talent displayed in raising funds. At FOLKS we are very proud of the fact
that almost all funding has come from the parents, families and friends of children with LKS. The fact that FOLKS can get information, support and advice out
to families and professionals in 26 countries has been only made possible by their hard work and generosity. There is never enough space to print the letters of
thanks that FOLKS receive on your behalf but there is no doubt that as a Charity we are helping to increase the understanding of LKS and so improve,
sometimes very directly, the lives of LKS children. Well done everyone and thank you.
"A Story of Time" - The staff and parents of Chipping Hill Infants School in Witham, Essex, decided to do something special to celebrate the new millenium.
With the enthusiastic encouragement of headmistress Chris Heard, the idea was conceived of writing and producing a very special play that would cover key
events from the last 2,000 years - " A Story of Time".The school generously decided that all proceeds should go to two charities - the Tuberous Sclerosis
Association and FOLKS. These were chosen as there were two local children who would have gone to Chipping Hill School had it not been for their disabilities.
One of those children is my son James who has a variant of LKS. My daughter Zoe spent three very happy years at the school, so when the idea of raising
money for FOLKS was floated I was only too happy to help. Little did I realise that this help would in fact entail not only contributing to the script, but also
appearing in the play itself. So it was that I joined the merry crew of the staff, parents and pupils who pulled together to write, produce and appear in the play.
And what a success! From set designers to costume ladies, from stage hands to make-up, the team spirit was tremendous and the children were a revelation.
Word spread so quickly from the open dress-rehearsal, that Mrs. Heard had to press- gang hardly any members of the audience to ensure four full houses. The
net result - some £600 for FOLKS! There is even talk of the script being revived for the next millenium!- from Ian Tapster.
Charity Cricket - a fascinating account of how to make cricket more interesting! Each year the Camphill Sports and Social Club at West Byfleet , Surrey hold
a charity cricket match to raise money for some of the larger charities. This year the secretary of the Club, Andy Cowie ( and brother to committee member,
Martin Cowie), decided to help a smaller group like FOLKS.
The match consisted of 30 overs per side, each team member paying £2 to play and then "fined" £1 if bowled out for a duck, 50p for no ball or wide and £5 for
king pair ( 2 ducks in a row!!!) They also sold a few beers during the match hence the £5 charge for a king pair!!!!!!! A really splendid effort as £250 was raised
and sounds like a lot of fun.
Sponsored Supper for FOLKS - other members of the Cowie family were not to be out done by Andy's efforts at the cricket match. Member Gill Cowie (
Martin and Andy's mother) had the very bright idea of holding a dinner party and at the same time raising £65 for FOLKS. We hope you all had a pleasant evening.
Sponsored Slim for FOLKS - three ladies did exactly the opposite and raised a total of £142.50 for FOLKS through a sponsored slim. We have to thank
Brenda Bolingbroke, Elaine Camis and Louise Fitzpatrick from Addlestone, Surrey for their self sacrifice and their success.
Generous Donations - £100 from FOLKS members Mr. and Mrs. Butler of Northern Ireland
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F.O.L.K.S.NEWS welcomes all contributions, articles, letters and comments for publication. If you have any item suitable for publication it should be sent to 3.
Stone Buildings ( ground floor ), Lincoln's Inn, London. WC2A 3XL by 1st February 2001. F.O.L.K.S. does however reserve the right to omit or edit items
where necessary. F.O.L.K.S. NEWS is published to provide general information to parents and carers of children with Landau Kleffner Syndrome and to
interested professionals.The contents are not and are not intended to be, a substitute for advice from a qualified medical practitioner, preferably one experienced
in the management of this complex disorder.
Go to Contents
If you have not already done so we should be grateful if you would take a few minutes to complete the attached DATA Sheet or to complete the electronic
version of the datasheet at at http://www.bobjanet.demon.co.uk/lks/datashee.html This will assist us in putting you in contact (should you so wish) with
families with an LKS child in your area/country or with families whose LKS child has similar symptoms to those of your child. Even if you do not yourself
desire such contact any information you supply could be of assistance to others. Please either complete the on-line version or print out, complete and return this
form to the address above.
Surname LKS Child's Name
Parents Forenames LKS Child's Date of Birth
Siblings Name(s) and Age(s)
Address
Country
Tel No(Home) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . (Work) . . . . . . . . . . . . . . . . . . . . . . . . . Fax No
Best Contact Time . . . . . . . . . . . . . . . . . . . . . .E-Mail Address
Doctors Names
Hospital
Age of LKS Onset . . . . . . . . . . . . . . . . . . . . . .Age of LKS Diagnosis
Seizures: Type of Seizures
Frequency of Seizures
Suspected Causes: Birth Related/Viral Related/Vaccine Related/Other (please specify)
Behaviour Problems: Mild/Moderate/Severe/Very Severe
Communication Problems: Mild/Moderate/Severe/Very Severe
Speech Deficit: Mild/Moderate/Severe/Very Severe
Motor Difficulties: Mild/Moderate/Severe/Very Severe
Current medications
Past Medications
Surgery/Other Treatments
Education: School Name . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .School Type
Speech therapy Y/N (Details)
Adult Support Y/N (Details)
LEA Name (UK Only) Statemented (UK Only) Y/N
If you consent to the release of your Name, Address, Tel/Fax Nos and E-Mail address to other LKS Parents please tick this Box
Note: FOLKS is registered under the UK Data Protection Act - Reg. No. X3934029. Any information supplied on these Forms will be kept in the strictest confidence and used only for registered purposes being the pursuit of FOLKS' objects (being the relief of persons affected by LKS and related disorders; to advance the education of the medical profession and the general public on the subject of LKS and its implications for the family; and to promote research into LKS, to publish the useful results thereof, and to support organisations providing research into LKS), the provision of consultancy and advisory services, the undertaking of research and statistical analysis, administration and fundraising.