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THE TREATMENT OF EPILEPSY
There are a number of general principles about the management of epilepsy which we will discuss at the beginning of this chapter. These include:
The fact that about 70-75% of people with epilepsy will achieve good seizure control with medical treatment using anticonvulsants. About 25% of people will not respond very well to anticonvulsants and a very small percentage may be helped by surgical means. Partial seizures, especially temporal lobe epilepsy, respond less well to medication than do generalised seizures.
The observation that 60-80% of epileptics who can be controlled with anticonvulsant medication (anti-epileptic drugs), need only one medication. This is called monotherapy (treatment with one medication only).
Naturally there are some epileptics who will need more than one drug, but rarely more than two. As a matter of principle, when someone first starts on anticonvulsant medication, the dose should be increased relative to the frequency of the fits. There should be no need for the addition of another medication unless the fits are not controlled (assuming that the patient is really taking the medication) or side effects from the drug arise. It is really only in these two situations that the addition of another drug is to be recommended. Frequency of dosage: the majority of anticonvulsants need to be taken only twice daily. Certain drugs – for example, phenytoin – can often be taken once a day. There may be occasions when it is necessary to administer anticonvulsant medication three times a day, but this is uncommon.
Compliance with medication: the term ‘compliance’ means the adherence by the patient to the doctor’s instructions. Patients who do not take their medication regularly are called ‘non-compliant’. The incidence of non-compliance probably varies from 30-50 per cent. The traditional medical interpretation of this phenomenon is that these patients are ‘naughty’ and are ‘irreverently’ ignoring medical advice. An alternative viewpoint, which I personally hold, is that non-compliant patients are telling their doctor that they do not agree with the proposed treatment or that they see it as inappropriate or unnecessary. There are many reasons for this form of behaviour such as the presence of drug side effects, which from the patient’s point of view are worse than having seizures, forgetfulness or boredom with taking medication. Other people may have very infrequent fits and decide that it is not worth taking medication for months on end, to prevent perhaps an annual fit. Whatever the cause of noncompliance, it should be detected and respected by the doctor. In general, patients should be encouraged to be compliant, but if they are not, the reasons for this should be sought. There is, of course, especially in certain circumstances, a social responsibility for epileptics to take their medication. Thus epileptics with driving licences have a responsibility to others not to have a seizure if at all possible and this means taking medication regularly.
The question of whether all seizures should be treated or eradicated. Epilepsy is a condition which, above all others, requires individualised treatment. As we have discussed previously, it is inappropriate to use the term epilepsy as an all-encompassing word. There are a number of different forms of epilepsy, all of which differ in origin, seizure type, seizure frequency, and disruption of lifestyle and outlook. It is very tempting to try to eradicate all seizures in every epileptic, but the reality is that in some people this may be extremely difficult and the price paid for eradicating seizures may be greater in terms of drug side effects than it is worth. It is essential that a consensus be achieved between doctor and patient as to the degree of seizure control desired by the patient – not that necessarily desired by the doctor. When such a proposal is put to patients, their response is often very positive, depending on their degree of self-confidence, the nature of their seizures and the drugs that they are taking. It is the patient’s right to decide on the degree of seizure control he or she wants and it is not the prerogative of the doctor to insist on the complete eradication of seizures. The management of epilepsy should be decided in cooperation with the patient or parents.
These comments do not imply a laissez faire attitude by doctors, but serve to emphasise the very important role of the patient in making these decisions.
*11/192/2*

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WHAT IS IT LIKE TO HAVE AN EPILEPTIC SEIZURE: WARNINGS AND AURAS
Sometimes seizures occur out of the blue. But many people who have epilepsy have a time before a seizure during which they may feel restless, irritable, depressed or uncomfortable. A few people feel more energetic than usual before a seizure, and have a feeling of well-being.
These feelings or altered behaviour are called the ‘prodrome’, and they usually build up slowly for hours or even days before the actual fit begins. Prodromes are more common in children than in adults, and are especially common in people who have temporal lobe epilepsy.
The prodrome is quite different from the aura. The prodrome is a warning that a seizure is going to happen sometime in the future: maybe in a few hours, maybe in as much as three days. But the aura means that the seizure has actually begun. The aura is part of the seizure, caused by seizure activity beginning in the brain. Anyone who has epilepsy may discover that they usually have a prodromal, warning phase, but you will only have an aura if you have simple partial or complex partial seizures – auras do not occur as part of a generalized or grand mal seizure.
Even if the person about to have the seizure does not realize that they are in any way different during their prodrome, the people around them may notice some change in their mood or behaviour. Mothers of children who have epilepsy often say that they can tell when their child is going to have a fit. One mother told me:
‘I can always tell when Mick’s going to have a fit, though I honestly can’t tell you just howl know. A day or so before I may feel there s something about the way he’s looking at me. His eyes seem different. Or he just behaves “differently” somehow, perhaps seems a bit duller than usual, though I doubt if anyone else but me or his dad would notice it.’
*10/193/2*

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THE DIAGNOSIS OF EPILEPSY
There are numerous tests that can be used to try and diagnose epilepsy. This chapter outlines some of the investigations that your doctor may suggest to you as being worthwhile.
Clinical history
The most important aspect in making a diagnosis of epilepsy is obtaining a good description of the seizures, either from the patient, parent or other people who may have witnessed the fit. An eye witness account is of great value. In the history, it is important for the doctor to obtain information about the patient’s birth, subsequent illnesses and whether or not there is a family history of epilepsy. It is also of value to obtain information on any events that may have led up to the seizure.
Physical examination
All patients with epilepsy should have a full physical examination the first time they present to their doctor. In primary (idiopathic) epilepsy, physical examination is usually normal. In secondary epilepsy, there may be abnormalities of the nervous system which can be detected. Clinical and laboratory tests
There are a number of investigations which may be necessary in an attempt to make a diagnosis of epilepsy.
Laboratory tests
Your doctor may suggest tests which include measuring the blood sugar concentration, blood calcium, magnesium and, rarely, amino acids. It may also, in certain situations, be desirable to look at the child’s chromosome pattern. A lumbar puncture, which means obtaining a sample of spinal fluid, is needed in some cases, but is not a routine investigation in epilepsy.
Skull X-ray
In a limited number of patients a skull X-ray may be of some help. It is rarely of any value in idiopathic epilepsy.
Electroencephalography
The electroencephalograph (EEG) measures differences in electrical activity between different parts of the head, arising from the spontaneous activity of the underlying brain cells.
Routine EEG: when your doctor requests an EEG for you, or your child, this entails going to an EEG laboratory where electrodes will be placed on the scalp and connected to an electrical recorder. Routine recordings may be made sitting or lying down. While the recording takes place, it is important that the subject be relatively still, as any muscular movement may be recorded on the EEG tracing and will make it difficult to interpret. Keeping still can be difficult for children and to get a satisfactory recording from a young child may take well over an hour.
The EEG is regarded by many, parents included, as the mainstay of the diagnosis of epilepsy. While this may be true, it is important to bear in mind that the EEG has some very real limitations. These include the fact that from a technical point of view it may be difficult to obtain an adequate recording in a young child. Perhaps more important is the fact that often patterns obtained on an EEG are non-specific. In other words, they suggest that something might be wrong, but do not provide precise information as to what the problem is. Furthermore, it is important to remember that an EEG is recorded over a short period of time, perhaps 20 minutes, so that for the person who has occasional fits, the EEG may be quite normal at the time that it is done. About 40% of patients with epilepsy have a normal EEG and about 25% of non-epileptic persons have an abnormal EEG. Thus the EEG does not necessarily give the whole answer.
The advantages of the EEG are that it is a relatively short test, painless and inexpensive. In some cases it may allow a precise diagnosis to be made. It also provides a permanent record which can be used as a progress report when required. It may be carried out when the patient is awake or asleep as these two different states affect the EEG and may be diagnostically helpful.
The EEG in childhood is more difficult to interpret than it is in adults. This is because of brain growth and maturation in childhood. It is important that an EEG performed on a young child be interpreted by someone experienced in looking at such EEGs.
Special EEG studies: occasionally it may be necessary to do a more sophisticated EEG in patients where there is diagnostic difficulty. Telemetry implies the use of long-term EEG recording techniques, with or without video observation, to allow better definition of complex or ill-explained fits. This is done by obtaining an EEG recording during the actual fit. It is of value in people with complicated epileptic problems.
Computerized tomography (CT scanning)
This is an X-ray procedure in which the patient lies with the head held still in an X-ray machine. A rapid sequence of X-rays of the skull and brain within it are taken and then an injection of dye is given and the sequences repeated. It is a painless procedure, although young children may be a bit scared by all the machinery. As it is imperative to lie still to get adequate pictures, it may be necessary to give a light general anaesthetic in the very young child.
In primary (idiopathic) epilepsy, the CT scan is often of little help. In less than 10% of persons is any useful information obtained. On the other hand, in secondary epilepsy the CT scan is a lot more useful as the brain damage can actually be seen. It will not detect very small lesions.
PET scanning and MRI
These two techniques, positron emission tomography (PET) and magnetic resonance imaging (MRI), both have the potential to assist in the diagnosis of epilepsy, especially PET scanning. They are very expensive techniques and so are not widely available. This is quite appropriate as these techniques will not be applicable to the majority of people with epilepsy. They will, however, be of use to epileptics with particular problems.
How many investigations any one person may need will depend upon the amount of information obtained after getting a history and examining the patient. It will also be related to the type of epilepsy and its severity. As stated in 1979 by Niall O’Donohue, a noted paediatric neurologist: “At all times, the physician should resist the mania for modern investigation. This is always expensive and time-consuming and frequently in the worst interests of the patient. There are no ‘routine’ investigations; there are only those that are indicated by the specific diagnostic problems presented by the patient.”
I am reminded of the 24-year-old patient I saw some years ago after he had had three grand mal fits over a period of 20 months. Each fit was embellished by an EEG and a CT scan. Both were normal on each occasion! How fortunate for him (and his doctor) that he was fully insured. Patients, and in the case of children, their parents, have the right to know what the tests are being done for, their relative risk and worth. Obtain this information from your doctor. If the explanation is unclear to you, get a second opinion. You are quite entitled to consult a second doctor if you so wish.
*10/192/2*

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DELIRIUM: DSM-IV CRITERIA FOR DELIRIUM-DISTURBANCE OF COGNITION AND PERCEPTION
The cognitive disturbance in delirium is global and therefore affects reasoning, memory, and language. One of its first signs is disorientation ? initially to time, then to place. It is quite common for hospitalized patients (like their physicians) to make minor errors when asked the day of the week or the date. Most of us can retain the correct information after it has been provided, but delirious patients cannot. As their illness worsens, such patients become disoriented to month, season, and year. Some believe they are at home, at work, or in another city; others confess ignorance of their location. Many delirious patients readily acknowledge that their thinking is confused.
The memory problems characteristic of delirium are also seen early in the course of the syndrome; a patient may forget how long he has been in the hospital or that an important procedure has been scheduled for later in the day. Short-term memory is affected before
long-term memory is, so someone who cannot repeat a sequence of five numbers or recall three unrelated words after several minutes is usually able to give the exact date of his birth. Delirious patients aware of their cognitive deficits sometimes refuse to cooperate with tests of orientation and memory.
In general, the disturbance in language parallels the disturbance in consciousness. Patients with hypoactive-hypoalert delirium usually produce little spontaneous speech, and what is said tends to be vague and fragmentary. Such patients have trouble finding words and naming objects. Written language is more severely impaired than spoken language, and patients may be unable to write a simple sentence. Because comprehension is also disrupted, there is little understanding of abstract ideas or complicated directions. As delirium deepens, the patient often mutters incoherently, then lapses into muteness.
In hyperactive-hyperalert delirium, the patient tends to speak a great deal, but has difficulty sticking to a subject. At times, speech is incomprehensible because it is so rapid and disorganized. Perseveration can occur in both forms of the syndrome: in hypoactive-hypoalert delirium, the patient may continue to give his location when asked the date; in
hyperactive-hyperalert delirium, he may repeat the same word over and over again.
Perceptual disturbances include distortions of stimuli, misidentifications of stimuli (illusions), and perceptions without stimuli (hallucinations). Although any sensory modality, including proprioception, can be affected, disturbances in vision are most common. When visual stimuli are distorted, they may be altered in size, shape, color, number, and movement. Thus, a patient sees his limbs as larger than they are or the straight edges of a vase as undulating lines. Visual illusions are most likely when stimuli are ambiguous (as in a darkened room) or when someone is falling asleep (the hypnagogic state) or waking up (the hypnopompic state). A patient who experiences visual illusions may identify nurses as relatives or pictures on the wall as television screens.
Hallucinations occur in about 50% of patients and are more common in the
hyperactive-hyperalert type of delirium (as seen in patients experiencing alcohol withdrawal) than in the hypoactive-hypoalert type (as seen in patients experiencing organ failure). Visual hallucinations vary, from simple forms to animals to elaborate scenes with life-sized figures. These latter perceptions may be combined with auditory hallucinations, which are second in frequency. Like distortions and illusions, visual hallucinations often begin at night and sometimes occur only when it is dark. Patients with nocturnal hallucinations may not remember them the next morning or may describe them as vivid dreams.
Hallucinations are often accompanied by emotional reactions and sometimes by delusional beliefs. Thus, a delirious patient who hallucinates a threatening animal or a murderer will likely respond with fearfulness and the facial expression and sympathetic nervous system changes appropriate to that state. Such a patient may also become agitated and try to leave the hospital (tearing out catheters in the process) because he believes he is about to be killed.
*10/172/2*

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WHAT IS IT LIKE TO HAVE AN EPILEPTIC SEIZURE?
‘I can’t describe my fits since I can’t remember them! Some people have a warning before an attack, but my only warning is that I go very vague, which is no help at all, since if you are vague then you do not realize it! The worst bit about having a fit is when you come round: I take ages to regain full consciousness, and it would be marvellous to have someone saying, “You have had a fit, therefore you are lying on the kitchen floor at Mrs Spinks’ house.” Most people when pressed will admit that I have had a fit (I usually have to ask the question) but they fail to tell me where I am. Since lam in such a confused state I need all the information I can get at this stage, together with loads of reassurance. (“I am here, I am not going away, you are going to be all right. “)’
From Epilepsy 78, British Epilepsy Association ? see appendix)
Many people who have epilepsy cannot actually tell you what they feel like during an attack, because they are either unconscious or confused during it, and have little or no memory of it afterwards. If they want to know what actually happens to them during the seizure itself they are dependent on what they are told by other people who have seen them have a seizure. And this is often a real worry.
?I used to worry dreadfully about people seeing me having a seizure. I thought I must look awful, I didn’t want anyone to see me like that. Then my doctor suggested to my parents that they take a video of me during an attack so that I could see what actually happened. I really didn’t want them to, and when they’d done it I refused to look at it for ages. But in the end I did and it wasn’t nearly as bad as I’d expected. I’m not sure quite what I’d imagined but really it was no big deal. After that I didn’t worry nearly so much about having a seizure in public.?
*9/193/2*

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Other names: Phenytek Er

WHAT ARE THE MAIN TYPES OF EPILEPSY?
As we have already discussed, there are a number of different seizure types (Chapter 3) and numerous different types (or syndromes) of epilepsy. As most epilepsy begins in childhood and adolescence, it is not surprising that most of the syndromes refer to children. This chapter will provide a fairly comprehensive list of the various types of epilepsy which exist and will discuss a few of the commoner types in some detail. Further information on the rarer types of epilepsy can be obtained from your neurologist or paediatrician/physician with a special interest in epilepsy. It is important to bear in mind that the classification given here is not fixed and will certainly change to some degree as the years go by.
The first subdivision relates to age. This leads to four subgroups:
newborn babies
infancy and childhood
childhood
childhood and adolescence
Each of these four groups is shown below.
Epileptic syndromes in newborn babies
*Benign neonatal convulsions
Early myoclonic encephalopathy
Other epileptic syndromes in newborn babies
Epileptic syndromes in infancy* and childhood
(*Infancy implies that period from 1-12 months of life.)
* Febrile convulsions * Infantile spasms
Benign myoclonic epilepsy in infants
Severe myoclonic epilepsy in infants
* Myoclonic epilepsy in non-progressive encephalopathies
* Epileptic seizures in children with inborn errors of metabolism
*Myoclonic – astatic epilepsy of early childhood
*The Lennox ? Gastaut Syndrome
Epileptic syndromes in childhood
*Childhood absence epilepsy
*Epilepsy with myoclonic absences
* Epilepsy with generalised convulsive seizures
*Benign partial epilepsies of childhood
*Benign partial epilepsy with centro-temporal spikes
*Benign epilepsy of childhood with occipital spikes
*Benign psychomotor epilepsy
*The Landau – Kleffner Syndrome
* Epilepsy with continuous spikes and waves during slow sleep
Epileptic syndromes in childhood and adolescence
*Photosensitive epilepsies
*Juvenile absence epilepsy
* Juvenile myoclonic epilepsy
*Epilepsy with grand mal on awakening
*Benign partial seizures of adolescence
* Progressive myoclonic epilepsy in childhood and adolescence
This list may seem rather frightening. It demonstrates the fact that the classification of epilepsy is complicated and that there are a number of different types of epilepsy which are at least partly age-related.
It is not possible in a book of this sort to discuss all these syndromes. Discussion will be restricted to the commoner ones.
Febrile convulsions
Febrile convulsions occur in children aged six months to five years in association with fever. By definition, febrile convulsions do not occur if the fever is due to a brain infection such as meningitis or if the child has underlying epilepsy. Febrile convulsions are common and occur in about 4% of all children. They will recur in about 30% of children who have had a single febrile convulsion. Febrile convulsions are very frightening for parents who may think that their child is dying. This is not the case. Febrile convulsions are essentially harmless and do not lead to later epilepsy except in very particular circumstances.
Infantile spasms
Infantile spasms occur during infancy, most commonly between three and eight months of age. The diagnosis is made by a combination of the spasms, retardation and the findings of hypsarrhythmia (a totally disorganized EEG). The latter is seen in about 70 ? 80% of children with this condition. The features associated with infantile spasms are sudden symmetrical contractions of muscles which occur on both sides of the body. In the most common variety, there is a sudden bending of the body, either at the trunk or neck.
A baby who is not yet sitting may be lying quite comfortably and will suddenly bring its legs up at the hips, throw the arms out and try to lift the head. It is not uncommon for the baby to cry out after a spasm and be rather irritable. The attacks are repetitive, but each one is brief, lasting only a few seconds. Children who can sit will bend at the waist and put their head between the legs. Hence the term ’salaam’ attacks. Attacks may be provoked by handling the baby and occur more often when the child is drowsy, either just going off to sleep or just having woken.
Other seizure types may appear as the child gets older, especially grand mal seizures. The outlook for children with infantile spasms is poor, both with respect to control of seizures and also with respect to the occurrence of moderate to severe mental retardation. Only about 30% of affected children will end up physically and mentally normal.
The Lennox – Gastaut Syndrome
This type of epilepsy, occasionally called minor motor epilepsy, often first appears in the preschool years. It includes a number of seizure types such as drop attacks, head nodding, absences, tonic episodes and also grand mal seizures. Frequently the affected children are mentally retarded.
The outlook for this form of epilepsy, as for infantile spasms, is poor. Control of the seizures is often very difficult and thus they tend to persist into adolescence and adult life.
Benign focal epilepsy of childhood
This is a relatively common form of epilepsy. Making the correct diagnosis is important because it disappears spontaneously in mid-adolescence. The seizures consist mainly of speech difficulties with such things as choking noises, facial twitching and so on. These occur mainly at night and there may also be nocturnal grand mal seizures. The EEG is invaluable in diagnosis as it shows specific features which include spikes in the centro-temporal region. Treatment with anticonvulsant medication is usually highly successful and as the condition remits in adolescence, the outlook is excellent.
Reflex epilepsy
This implies a form of epilepsy which is triggered by some form of sensory stimulus. There are many different types of reflex epilepsy. The commonest form is photosensitive epilepsy. This is most usually related to watching television or may be associated with flickering lights such as strobe lights at a discotheque. Actually watching television is not a problem, but if the child sits with his nose glued to the set, or goes close to the set to change channels, the background flickering on the screen may be a stimulus to the fit. This also applies to computer video games, but does not seem to apply to standard office video display units. Photosensitive epilepsy usually consists of grand mal seizures sometimes preceded by myoclonus. Absences may also occur, but are uncommon.
*9/192/2*

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HOW DO I KNOW IF I HAVE BDD? HAIR CONCERNS
Hair concerns are also very common. The most common worries focus on hair loss, thinning, or balding (a concern of one third of people who dislike their hair) and excessive facial or body hair (also present in one third of people with hair concerns). But hair obsessions may focus on virtually any aspect of the hair: it’s too curly, too straight, too full, not full enough, uneven, messy, or
dirty. James, a teacher, thought his hair “never looked right.” He feared that it was thinning and that other people laughed at him because he was going bald.
Each day he applied hair potions that cost him hundreds of dollars a month. Although his friends said his hair looked fine, he was so upset over it that he bought a thousand-dollar hairpiece. But this didn’t help. As he stated, “I was never satisfied; I still battled myself and wanted to get rid of it.” In fact, James was so unhappy with his hairpiece that he destroyed it in a fit of rage.
While men are more likely than women to worry about thinning hair,
women have this concern as well. One woman said her mother had very thin
hair, and she feared she would eventually look even worse than her mother,
becoming completely bald. It was hard to come in to see me because she feared
she became “balder and balder” with each visit.
Getting a haircut is usually a very distressing?even traumatic?event for people with hair concerns. “I’m terrified of getting my hair cut,” Jon told me. “Getting the right haircut is crucial. There’s very little stability in my life because of the BDD. How I feel and function depends on how I happen to look and the quality of my haircut.”
Hair concerns may also involve other body hair. Men may be preoccupied with supposedly uneven, light, or heavy beard growth. Men or women may think they have too much or too little body hair. Marie, an attractive 24-year-old nursing student, worried that she had “excessive” and “dark” hair on her nose and arms. She thought about her hair nearly “all day every day,” and she repeatedly looked at her arms, tweezed her hair at work, and, using special lights, checked her facial hair in mirrors for an hour a day. She tried to hide her hair with makeup, had electrolysis, wore long sleeves in the summer, and covered her face with her hands. Marie described her preoccupation as “severely upsetting,” saying that she felt “masculine” and “like a freak” whom no one would ever love.
*42/204/8*