Seizures and Head Protection: BUYING A SEIZURE HELMET

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I often get a question about helmets for children with seizures. The scariest seizures are drop seizures or  astatic seizures but generalized tonic clonic seizures can also cause injury. Its important to realize that with or without a helmet;  on or off medicines... accidental injury is more common in people with epilepsy.
 JR


Seizures and Head Protection: BUYING A SEIZURE HELMET

The doctor or another health care professional has just advised you to buy a protective helmet because you have been having seizures which have been causing sudden drops or falls that may lead to head injury. But what type of helmet is best? And where you should you go to get one?

To determine the best type of helmet, begin by thinking about your seizure behaviors. If you fall forward, a helmet with a face guard, face bar, or visor is needed. If you fall backward, the back of your head needs protection. A good helmet also needs a chinstrap that can be adjusted so that it is snug but not uncomfortable. No matter what direction you fall, the helmet should absorb the impact, so it will be useless if it does not remain securely on the head.

Not all types of helmets offer adequate protection. Bicycle helmets are comfortable and good-looking, but they do not offer the best protection for injuries from seizure activity. Coverage is insufficient in the back and on the sides of the head. When seizures cause forward falls, they do not protect the face, and if they are not adjusted properly, they move too much. Longevity of the helmet is another problem. With repeated hard falls, a bicycle helmet may crack.

Boxing helmets, made of soft leather, are comfortable but they offer no protection and do not allow adequate ventilation. Football helmets offer good protection but are large and uncomfortable to wear. Baseball batting helmets are loose-fitting and are made without a chinstrap, so they offer inadequate protection.

Suitable helmets are commercially available through sporting good stores, medical supply companies, and the rehabilitation departments of some hospitals. Hockey helmets (CCM and Bauer) are one of the best choices. They offer maximal protection, come in a variety of colors, fit all age groups (except infants) and can be purchased and fitted in any sporting goods store.

Other helmets are made especially to protect people with medical needs, including very small children. Some of them come in choices of style or color that may be more appealing to those who don't want to look like a hockey player.

Link Here

Greater Costs, Morbidity Among Uncontrolled Epilepsy Patients

An intersting article about the costs of poorly controlled epilepsy - JR

Greater Costs, Morbidity Among Uncontrolled Epilepsy Patients

By: TARA HAELLE, Clinical Neurology News Digital Network

10/23/12 

VITALS

Major Finding: Compared with patients with well-controlled epilepsy, patients with uncontrolled epilepsy have 1.9-2.2 times more fractures and head injuries, receive 1.3-1.9 times more prescriptions, are hospitalized 5.4-6.7 times more often, are admitted to emergency departments 3.7-5 times more often, and incur $12,258-$14,582 greater annual health care costs.

Patients whose epilepsy was uncontrolled had more injuries, spent more time in the hospital, received more prescriptions, and incurred greater health care resource usage and costs than did patients whose epilepsy was under control in a retrospective, longitudinal matched-cohort study.

Additionally, uncontrolled epilepsy in private insurance patients incurred nearly $2,900 more in work time lost for disability and sick leave, comprising about one-fifth of these patients’ total direct health care costs.

Lead author Ranjani Manjunath of GlaxoSmithKline and her associates analyzed public and private insurance claims to determine how health care resource utilization and costs and epilepsy-related injuries differed between patients with uncontrolled epilepsy and those with well-controlled epilepsy. The findings were reported online Oct. 17 (Neurology 2012;79:1908-16).

The researchers defined patients with uncontrolled epilepsy as those who had at least two consecutive changes in their antiepileptic drug (AED) regimen (at least a month apart) and at least one subsequent hospitalization or emergency department visit within the next year. Patients taking AEDs but who had no changes in their therapy as well as no hospitalizations or ED visits were defined as having well-controlled epilepsy.

A total of 3,454 Medicaid patients and 602 private insurance patients with uncontrolled epilepsy were matched 1:1 with well-controlled epileptic patients for the study. Propensity score matching was used to reduce sample selection bias, and adjusted risk ratios for outcomes took into account age, sex, state or region, baseline AED use, use of other drugs known to increase seizure risk, baseline costs, and psychiatric conditions or epilepsy-related comorbidities (Alzheimer’s disease, brain tumor, meningitis, migraine, and stroke). A lower percentage of uncontrolled epilepsy patients were using AEDs at baseline: 48.1% of uncontrolled Medicaid patients, compared with 52.6% of well-controlled Medicaid patients (P less than .001), and 40% of uncontrolled private patients, compared with 45.5% of well-controlled private patients (Pless than .05).

...

The researchers selected only adult patients who had a prescription for an AED and who had been diagnosed with epilepsy or diagnosed with two nonfebrile seizures more than a month apart. All patients had been enrolled in their insurance plan for at least a year, and baseline included the 180 days before the patient’s first AED prescription. Patients were tracked until death, the end of continuous enrollment, or the end of the period for which data were available.

The study found that Medicaid and private patients with uncontrolled epilepsy had similarly higher incidence rate ratios (incidence rate defined as events divided by patient-years) of injury with 1.9-2.2 times more fractures and head injuries. 

Medicaid patients had 2.45 times more car accident injuries and 10 times more status epilepticus episodes.

Compared with patients who had well-controlled epilepsy, Medicaid patients had 1.94 times more AED prescriptions, 1.47 times more non-AED prescriptions, 6.65 times more hospitalizations, 7.72 times more days in the hospital, 3.67 times more ED visits, 1.66 times more outpatient services, and 3.09 times more neurologist visits. 

Likewise, private patients received 1.75 times more AED prescriptions, 1.34 times more non-AED prescriptions, 5.37 times more hospitalizations, 7.27 times more days in the hospital, 5.05 times more ED visits, 1.41 times more outpatient services, and 2.28 times more neurologist visits. (All P values were less than .05.)

Overall, Medicaid patients with uncontrolled epilepsy incurred an average $12,258 more in costs than Medicaid patients with well-controlled epilepsy, and uncontrolled epileptic private patients’ total extra cost was $14,582. 

Most of these costs came from hospitalization; outpatient services and prescription drugs comprised the next largest share. Private patients also missed 2.5 times more workdays, including 61% more sick days.

Article here

Treating Epileptic Seizures in Kids by the Clock

Neurologist Develops Individualized Plans for Patients Who Don't Respond to Conventional Drug Therapies

By DAWN FALLIK

Tobias Loddenkemper, a pediatric neurologist, works with some of the hardest epilepsy cases—the children whose seizures have been little helped by medication or surgery.

Nearly a third of epilepsy patients don't get sufficient relief from conventional drug treatments. But where advanced techniques don't help, Dr. Loddenkemper hopes a simple solution might: timing patients' medication to better coincide with their seizures.

Epilepsy, which affects 1% of the U.S. population, is a seizure disorder involving a surge of electricity in the brain. Its cause often isn't known, but in children the condition may be congenital or the result of a head injury. When medications can't control seizures, alternative treatments may be attempted, including surgery, strict diets and brain-stimulation techniques. But these have had limited success, according to the Epilepsy Foundation, a patient-advocacy group.

Dr. Loddenkemper, who works at Children's Hospital in Boston, is trying ways to make medication more effective by adjusting dosages based on when a person's seizures typically occur. This month the 39-year-old won the American Academy of Neurology's Dreifuss-Penry Epilepsy Award for young researchers for his work on treatment approaches.

Enlarge Image

Children's Hospital Boston

'It's heartbreaking when children lose developmental progress,' says Tobias Loddenkemper, in his office at Children's Hospital Boston.

Dr. Loddenkemper's approach seems basic. He asked his patients, or their parents, to keep seizure diaries, a standard practice. From those diaries, he noticed many patients had seizures around the same time every day, but often took the same dose of medication throughout the day. He changed their medication schedule so they took a higher dose when they most frequently had seizures.

article here

“Living With Epilepsy” Conference - May 5th 2012 - Houston TX, CME Available!

What: “Living With Epilepsy” Conference & Fundraising Launch Party

Who: The Epilepsy Warriors Foundation

When: Saturday, May 5th, 2012

Why:  The Goal of this Conference is to Educate those dealing, living and working with Epilepsy on what Epilepsy is, how it is managed, the Dangers of Sudden Death from Epilepsy (SUDEP) and not talking about it, the daily struggle of trying to manage epilepsy and also manage a family as well . The Main Goal is to provide Research Funding and Attention to the phenomenal research that is being done within the Houston Medical District both at University of Texas and Baylor College of Medicine and what we need to do to keep it moving forward towards a CURE

Where:  Memorial City-The Westin Hotel, Houston Texas
945 Gessner Road, Houston TX 77024

There is a block of rooms being held at a discounted rate of $109.00 for Friday and Saturday Evenings. Ask for the Epilepsy Warriors Foundation Room Block.

Each person is responsible for making their own room reservations contact the Westin Hotel Directly at 281-501-4300 or through this link you can make your reservations directlyhttps://www.starwoodmeeting.com/StarGroupsWeb/booking/reservation?id=1204184117&key=7F606

Time:  Conference Doors open 8:00 Am and Conference Runs from 9:00 Am-5:00 Pm

The Epilepsy Warriors Foundation Fundraising and Launch Party is from 7:00 Pm-11:00 Pm in the Ballroom of the Westin

RSVP if you would like to attend: Registration is $100.00 and This activity  has been approved forAMA PRA Category 1 Credit™

                                                                                                 

Susan Noble
President/Executive Director
239-233-2205
info@epilepsywarriors.org
www.epilepsywarriors.org

KeyNote Speaker: Richard Siravo of The Matty Fund

http://mattyfund.org/

Matthew Siravo was born on February 18, 1998, the son of Debra and Richard Siravo of Wakefield, Rhode Island. His three older brothers are; Joseph, Stephen and Christopher. Matthew was a healthy newborn child with no diagnosed medical conditions during most of his first year of life. Ten days before his first birthday, Matty suffered a gran mal seizure during the early morning of February 8, 1999.

In May 2003, at the advice of doctors, Matthew underwent brain surgery at Boston Childrens Hospital. The surgery reportedly went well however, Matthew suffered a prolonged seizure while in recovery, which caused cardiac arrest and massive brain damage. Matthew died peacefully on May 11, 2003, Mother’s Day, surrounded by his family and while his favorite church music played by his bedside.

The Matty Fund takes great pride in the programs and services which assist families dealing with epilepsy. While we admire our accomplishments, we must also move forward to meet the challenges ahead by creating innovative ways to inform and educate families, school and hospital personnel about the protocols surrounding epilepsy. It is the goal and positive attitude we acquired after losing young Matty in 2003. Richard and Debbie  Siravo, Founders of th Matty FundWe have committed ourselves to honor his legacy by helping children that face the uncertainties surrounding epilepsy.

Physicians Speaking: 

Dr. Joshua Rotenberg, MD, MMS, DABPN, DABP,DABSM

Diplomate American Board of Psychiatry and Neurology with Added Qualifications in Sleep Medicine

& Special Qualifications in Child Neurology

Dr. Melissa S. Jones, MD

Diplomate American Board of Psychiatry and Neurology with Special Qualifications in Child Neurology

Dr. Daniel J. Curry, M.D.

Texas Childrens Hospital -Director of Pediatric Surgical Epilepsy and Functional Neurosurgery 

Assistant Professor Neurological Surgery Baylor College of Medicine

Dr. Giridhar P. Kalamangalam, M.D., D.Phil.
American Board of Psychiatry and Neurology in Clinical Neurophysiology
CCST, Neurology Board Certification of the United Kingdom

Dos and Don'ts of Seizure First Aid - Houston Pediatric Epilepsy Care

Dos and Don'ts of Seizure First Aid

Would you know what to do if you witnessed someone having a seizure? These dos and don'ts could help you save a person's life.

By Alice Martin 

Medically reviewed by Lindsey Marcellin, MD, MPH

A seizure can be terrifying to witness, especially if you aren’t prepared to help. Doctors say that it’s a good idea for everyone to know how to react with the right first aid, particularly if a family member, friend, or co-worker has epilepsy.

How to Recognize a Seizure

When 10-year-old Will Bibbo had his first seizure a year ago, his mother, Margaret, was understandably frightened. “It was the middle of the night, and he started making gurgling sounds, like he was choking," she recalls. "He was foaming at the mouth, and his body was rigid.” Not knowing what else to do, the Atlanta mother called 911.

“With the most intense seizures, a person will make choking sounds, go stiff, lose consciousness, and jerk their arms and legs," says Joshua Rotenberg, MD, a pediatric neurologist at Memorial Hermann Memorial City Medical Center in Houston. "It can be very dramatic and very hard to miss.”

The most important thing you can do if you witness someone having a seizure, he says, is to stay calm. About 80 percent of seizures are over in three minutes — which makes it all the more important to act quickly and effectively. These basic dos and don’ts can help.

Epilepsy First Aid: Dos

• Keep a cool head under pressure. Focus on your goal — to keep the person safe until the seizure stops.
• Move things out of the way. Remove the individual’s eyeglasses, tie, or scarf, if you can. Also look out for any hard or sharp objects nearby that might cause injury. If the person is seated, try to gently pull him onto a flat surface so he does not fall.
• Place something soft and flat under the head. A pillow, a folded jacket, or a sweater offers protection.
• Try to turn the person on her side. This clears the airways by allowing saliva to flow out of the mouth.
• Time the seizure. Note the time when the seizure begins. An epileptic seizure will generally last only two to three minutes.
• Check for medical identification. Someone with epilepsy should be wearing a medical bracelet or card containing emergency contact information, what medications he takes, and any drug allergies.
• Call 911 — if you don’t know the person; if it is the person’s first seizure; if the person is pregnant, has diabetes, or is injured; or if the seizure lasts longer than five minutes.
• Control the crowd. If you are in a public place, clear a path for emergency medical workers and tell onlookers to move along.

Epilepsy First Aid: Don’ts

• Restrain the person. You could injure the person or get injured yourself.
• Offer food or drink. Even a sip of water could cause choking.
• Put anything in the person’s mouth. It is not true that people having an epileptic seizure can swallow their tongue. Attempting to put an object in the individual’s mouth could be dangerous to you and to him.
• Perform CPR. Don’t attempt cardio pulmonary respiration or artificial respiration unless the person is not breathing when the seizure has stopped.

Epilepsy First Aid: After the Seizure

Most people, like Margaret’s son Will, don’t remember their seizures — but that doesn’t make the experience any less distressing. “A seizure can be traumatic and embarrassing,” Rotenberg says. “People may wake up to find that they have lost control of their urine or vomited. It’s important to respect them.”

The person may also be confused and combative or try to run away, but more likely, he or she will be very tired and want to sleep. Stay as long as you can and offer reassurance.

Epilepsy First Aid: Practice Makes Perfect

If a loved one has epilepsy, it’s a good idea to come up with a “seizure action plan.” Every family member should know — and practice — what to do.

Bibbo’s twin sister has witnessed his seizures and heard his choking sounds in the night. But now she knows how to stay calm and help her brother. “It’s still a shock every time Will has a seizure,” says his mother, “but it gets easier because we are prepared.”

article here

Are you sure its a pseudoseizure? Check again. 50% of people with pseudoseizures may also have epilepsy.

Arq Neuropsiquiatr. 2010 Apr;68(2):168-73.

Epilepsy in patients with psychogenic non-epileptic seizures.

Marchetti RL, Kurcgant D, Gallucci-Neto J, Von Bismark MA, Fiore LA.

Source

University of São Paulo School of Medicine, São Paulo, SP, Brazil. rlmarche@bighost.com.br

Abstract

The aim of this study was to evaluate the frequency of epilepsy in patients who presented psychogenic non-epileptic seizures (PNES). The evaluation was carried out during intensive VEEG monitoring in a diagnostic center for epilepsy in a university hospital. The difficulties involved in reaching this diagnosis are discussed. Ninety-eight patients underwent intensive and prolonged video-electroencephalographic (VEEG) monitoring; out of these, a total of 28 patients presented PNES during monitoring. Epilepsy was defined as present when the patient presented epileptic seizures during VEEG monitoring or when, although not presenting epileptic seizures during monitoring, the patient presented unequivocal interictal epileptiform discharges. The frequency of epilepsy in patients with PNES was 50% (14 patients). Our findings suggest that the frequency of epilepsy in patients with PNES is much higher than that of previous studies, and point out the need, at least in some cases, for prolonging the evaluation of patients with PNES who have clinical histories indicating epilepsy.

PMID:

 

20464279

 

[PubMed - indexed for MEDLINE] 

Free full text

DISCUSSION

Surely, one of the clinical situations that produce the greatest polemics is the association of epilepsy and PNES. The prevalence of epilepsy in patients with PNES has been estimated as ranging from 5.3 to 73%^3,11-16. This variability in different studies may reflect several methodological characteristics, such as the different inclusion criteria when determining epilepsy and PNES, the presence or not of ictal/interictal EEG abnormalities, the diagnostic environment (inpatient or outpatient), the presence of prolonged monitoring by VEEG, the monitoring duration and the sample size.

This diagnostic issue is extremely important. In the first place, omission of the PNES diagnosis may be very harmful and damaging to patients. Martin et al.²⁰ estimated that the lifetime costs borne by a person with PNES, in diagnostic tests, procedures and treatments would be around US$ 100,000. They also calculated that US$ 100 to 900 million are spent yearly in the USA on the PNES patient population. Several studies have shown that early and appropriate diagnosis of PNES, followed by adequate treatment, may lead to remission in 19 to 52% of cases, or to improvement in 75 to 95% of cases. Therefore, a significant reduction in the use of healthcare systems and in costs is involved^20-23. PNES leads to severe social and psychological consequences. These patients and their families face the same problems as patients with epilepsy: stigmatization, poor schooling, unemployment, difficulties in interpersonal relationships and social exclusion²⁴. From the medical point of view, patients are exposed to iatrogenic procedures, such as the use of high doses of AED²⁵, venous punctures, intravenous AED, and orotracheal intubation²⁶. Moreover, the rate of comorbidity with depressive and anxiety disorders is high^14,21, and the quality of life of these patients is worse than that of patients with difficult-to-control epilepsy²⁷.

On the other hand, to omit the diagnosis of epilepsy may be just as damaging, or even more so. Patients with a diagnosis of PNES may be counseled to halt their AED use and reduce their visits to emergency healthcare facilities, so as to reduce iatrogenic levels and costs^28,29. The treatment may be adapted to a condition of psychogenic nature³⁰. Wyler et al.³¹ dramatically pointed out the possible consequences of these procedures when reporting the case of a 15-year-old girl who perished as a result of an ES that occurred after PNES had been diagnosed by means of VEEG and after medical discharge following AED withdrawal.

This prevalence of epilepsy among patients with PNES was 50% in an epidemiological study carried out in Iceland⁶, but in two recent studies^12,16, relatively low frequencies of epilepsy were found, respectively 5.3 and 9.4%. In our study, this association occurred in 14 patients (50%), a high association level, even though our criteria for diagnosing epilepsy were more restrictive than in both of the abovementioned studies. As in these studies, epilepsy was defined as present when the patient presented ES during VEEG monitoring or otherwise, when unequivocal interictal epileptiform discharges were observed (sharp waves, spikes or complex spike-waves) although no ES occurred. Benign variants were not considered to be epileptiform conditions. However, unlike the two previous studies, interictal epileptiform discharges were considered to be present only when corroborated by clinical validation. Even if we had considered the presence of ES during VEEG monitoring as the one and only criterion for epilepsy, we would have had five patients (18%) under these conditions, i.e. approximately twice the number of both previous studies, presenting relatively low rates of epilepsy.

Following the validation criteria of our study, we concluded that out of the 14 patients with epilepsy, eight (57.1%) were in remission under treatment with AED or after AED withdrawal. Ramsay et al.³² drew attention to the need to distinguish between simultaneous and sequential presence of epilepsy and PNES, when these conditions coexist. According to these authors, their simultaneous presence is easier to establish, due to the probable occurrence of ES during VEEG monitoring, whereas that may not happen when their occurrence is sequential. Usually, in these cases, existence of epilepsy precedes PNESD, complicates it and may, as these authors suggest, be related to the appearance of PNES.

PNES is usually considered to be present when the patient presents complete absence of therapeutic response to AED, or loss of response (therapeutic failure), or perhaps paradoxical responses to AED (worsening or spontaneous and unexpected remission). Moreover, it can occur eventually in function of atypical, multiple, inconsistent or changing pattern seizures, or when these are unleashed by an evident and specific stressful event with close timing connections with the occurrence of seizures³³. The previous elements are particularly considered when the patient presents normal ancillary examinations (interictal routine EEGs and imaging studies such as CT, MRI and SPECT)^34,35. These situations lead the attentive physician to consider the possibility of referral to a center specializing in differential diagnosis and intensive monitoring by VEEG. Out of 22 patients from our sample who were referred for suspected PNES, nine (41%) presented associated epilepsy. Out of six patients in our sample who were referred for other reasons, the presence of epilepsy was not confirmed or observed in only one of them. In these cases, the patients presented PNES as an unexpected phenomenon set within an investigative process directed towards other aims, such as pre-surgical evaluation or diagnostic evaluation of refractory epileptic syndromes. This draws attention to the importance of PNES as a clinical phenomenon that complicates the diagnostic process and treatment of patients with epilepsy.

In one of our cases, the patient presented both spontaneous and suggestion-induced CNEP during VEEG monitoring, but its occurrence was not validated by the medical history data (clinical validation), or by observation of video-recorded events by an external observer with close ties to the patient (observer validation). In this case, although PNES occurred during intensive monitoring by VEEG, we do not believe these represented a real clinical problem. The patient also presented complex partial epileptic seizures during intensive VEEG monitoring, originating from the frontal lobe, which was validated by both clinical and observer validation. This case points out the possibility of isolated PNES occurrence in some gullible individuals, especially when exposed to a favorable situation such as VEEG monitoring¹⁷. It also points out the risk of giving up the investigation far too early because of PNES occurrence, thereby leading to failure to diagnosed epilepsy.

As previously reported, although our criteria may be considered more restrictive than the two previous studies with relatively low rates of epilepsy, our findings suggest that the frequency of epilepsy in patients with PNES is much higher. What might be responsible for these differences? In these three studies, the populations received care in tertiary centers, with patients evaluated for similar reasons. Martin et al.¹⁶ drew attention to the size of their sample (514 patients with CNEP) and to a high rate of referral of patients for suspected PNES. However, out of 22 patients in our sample who were referred on these grounds, nine (41%) presented associated epilepsy. This indicates that, even when the level of suspicion is high for PNES, coexistence of epilepsy may be a significant problem.

One significant difference between our study and others is the period of VEEG monitoring. In previous studies, evaluations typically lasted three days^12,16, and did not exceed five days to one week. In our study, the typical duration of VEEG monitoring was three weeks, with a range from one to six weeks. What was the result of this prolonged monitoring? In most of our patients, PNES presented spontaneous or provoked occurrence, by induction with our protocol of suggestive techniques over the first days of evaluation. Epileptic seizures occurred generally some time after reduction or complete withdrawal of AEDs. In some cases, interictal discharges were registered only after AED withdrawal and a delayed observation period. Lengthening of the monitoring period was usually guided by medical history information, suggesting epilepsy as well as PNES. Possibly, early ending of VEEG monitoring after occurrence of PNES would lead to failure in the diagnosis of epilepsy.

In conclusion, our findings point out the need, at least in some cases, for prolonging the evaluation of patients with PNES and clinical histories indicating epilepsy.

Nodding disease: Uganda battles mysterious neurologic ailment

While discussing Ugandan violence / Stop Kony, consider the burden of global neurologic disease.  JR

Nodding disease: Uganda battles mysterious ailment

By Jocelyn Edwards


[1] Nodding disease: Uganda battles mysterious ailment Jocelyn Edwards [2]March 4, 2012 07:54

PADER DISTRICT, Uganda — A mysterious illness has killed 200 children in rural Uganda and has debilitated hundreds more, leaving doctors scrambling to find its cause and cure.



Nodding disease grips children by seizures in which their heads move up and down. The ailment prevents them from eating properly and many afflicted children become stunted physically and mentally.



Morrish Okwonga, 9, and Agnes Akun, 15, have nodding disease and they are noticeably quiet and listless as they sit under a mango tree by their family’s hut in northern Uganda.



“They don’t look so happy like the normal children," said their father, John Anywar. "They have changed so much. Sometimes they look like they are running mad.”



Agnes and Morrish’s dirt-stained clothes hang loosely off their scrawny bodies. Agnes contracted the disease in 2007 and her brother in 2009. Since they often get seizures that prevent them from eating, they are malnourished and small for their ages.



Their father said he has taken them to the doctor innumerable times. But given the enigmatic nature of the disease, it hasn’t done much good.



“It’s very frustrating because we are always going with them to the health centers and then the doctors come and get blood samples but unfortunately we have not got any help. They say they are still looking for drugs (to cure it),” says Anywar.



Nodding disease affects an estimated 4,000 children in northern Uganda and thousands more in South Sudan, according to the World Health Organization.



The disease, named for the uncontrollable episodes of head nodding that afflict sufferers, has killed at least 200 children in Uganda since the syndrome was first reported by the country’s health ministry in 2009.



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Despite investigations by local and international researchers, experts are still largely mystified by the disease. The cause remains unknown and there is no cure.



Children with the disease exhibit a baffling array of symptoms.



Since the seizures are often brought on by food, sufferers find it difficult to eat. They become malnourished and mentally and physically stunted. The disease can also lead to blindness.



Often children with the disease become severely mentally disabled and are prone to accidents like burning, drowning and car accidents. Most deaths from the disease are attributed to these secondary causes.



“The clinical picture is quite strange,” said Dr. Emmanuel Tenywa, of the World Health Organization. “This is a new disease that we have not yet fully understood.”



Experts do have some leads.



In particular, they think nodding disease may be linked to the black fly-borne parasite that causes onchocerciasis, known as river blindness. “In the areas where these cases are reported, that is (also) where the highest prevalence of onchocerciasis cases are,” said Tenywa.



Researchers have also noted a severe deficiency of vitamin B6 among populations where the disease is prevalent.



“We don’t know how the two might be connected but there is a small rare (seizure disorder) that can be cured by giving high doses of vitamin B6,” said Dr. Scott Dowell of the US-based Centers for Disease Control (CDC). “It does make us wonder if high doses of vitamin B6 might be helpful to these children.”



The CDC is working with the Ugandan Ministry of Health to set up trials of various types of seizure medication as well as vitamin B6 supplements for the children affected.



As experts work to find an effective treatment, the disease continues to devastate communities in Uganda, where in some villages almost every family has a child with nodding syndrome.



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“We do not want to say it’s a disaster, but the situation is bad and action has to be taken,” said Rukia Nakamatte, a spokeswoman for the Ugandan Ministry of Health.



At Jupa Primary School in Pader District, 59 out of 250 children have contracted the syndrome, according to head teacher Pacotoo Saidi. Four have had to drop out because of the disease.



The children in the school with the syndrome don’t perform well and sometimes experience seizures in class.



“You [will] find the child vomiting. You will find a lot of saliva coming from the mouth and a change in the eyes,” said Saidi. “It [is] as if somebody is struggling with death. There is nothing we can do except make sure he or she doesn’t get injured.”



He called 7-year-old Nancy Layet into his office to stand beside him at his desk. Like Agnes and Morrish, she is quiet and devoid of expression.



“This is a child who has the disease,” he says. “You can see the eyes, you can see the mouth. You can see that (she) doesn’t look normal.”



Agnes and Morrish had to drop out of school last year. Anywar, their father, said he wishes they could have continued but they were having too many seizures.



After years of seeing his children suffer with the disease he is starting to lose hope.



“We are just resigned to our fate," said Anywar. "It’s a similar thing everywhere in this area. There is nothing to do about it.”



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http://www.globalpost.com/dispatch/news/regions/africa/120229/nodding-disease-uganda-battles-mysterious-ailment