Terima kasih kepada rekan-rekan yang telah memberikan informasi tentang SSPE.
Berikut summary ttg SSPE : From: "Chatarina Esti Widyaningrum" <[EMAIL PROTECTED]> To: <[EMAIL PROTECTED]> Subject: VIRUS SSPE Date: Friday, August 15, 2003 11:07 AM Dear Mba Tika, Lewat japri aja ya soalnya email kantor saya suka error kalo ngirim email ke milis Yang saya tau ( juga info dari sepupu saya : Mahasiswi kedokteran Unpad tk. Akhir)) Biasanya penderita sebelumnya pernah kena virus campak Trus karena daya tahan tubuhnya agak menurun , virus ini menyerang lagi dan biasanya ke otak Tapi menurut stastistik , kasus ini jarang terjadi. Biasanya juga menyerang anak yang sudah agak besar. Anaknya diopname atao di rumah? Maaf ya kalo info ini tidak membantu. Salam, Esti. From: "Fiana Amanda Sari" <[EMAIL PROTECTED]> To: <[EMAIL PROTECTED]> Subject: VIRUS SSPE yang menyerang OTAK? Date: Friday, August 15, 2003 11:22 AM Saya cari di google.com VIRUS SSPE artinya A defective variant of MEASLES VIRUS that has been isolated from the brain tissue of patients with subacute sclerosing panencephalitis. MEASLES VIRUS: The type species of MORBILLIVIRUS and the cause of the highly infectious human disease MEASLES, which affects mostly children. Defective Viruses: Viruses which lack a complete genome so that they cannot completely replicate or cannot form a protein coat. Some are host-dependent defectives, meaning they can replicate only in cell systems which provide the particular genetic function which they lack. Others, called SATELLITE VIRUSES, are able to replicate only when their genetic defect is complemented by a helper virus. Berikut sedikit info Are you caring for someone with SSPE? This is a story about our son, Adam. He contracted measles in 1982 just prior to his scheduled measles vaccination at the age of 14 months. His measles was complicated by its being preceded by a severe gastric infection. This may have had some bearing on the outcome. Adam was diagnosed as having SSPE in April, 1993, just one month before his twelfth birthday. Since the previous November he'd had what we thought was just a nervous habit of jerking up his hands and arms. During the school term between Christmas and Easter it became obvious that he was not coping with his school work, was finding it very difficult to learn anything new and was struggling with his reading. By the end of March he began to lose his balance. At first he was diagnosed as having Tourette's Syndrome but it was quickly recognised that his symptoms did not fit well with TS. An intellectual assessment revealed a bizarre and erratic performance that lead the paediatrician to add epilepsy to the TS diagnosis. After an MRI scan proved normal, he was given an EEG which led his neurologist to the diagnosis of SSPE. This was confirmed by analysis of Cerebral Spinal Fluid (CSF). He went downhill very quickly from skiing and playing football in March 93 to being more or less wheelchair bound by May. By June he was only saying the odd words and occasional phrases. During the remainder of the summer of 93, things continued to change and by September he was finding eating very difficult. It was taking 5-6 hours a day to feed him less than a litre of fluid. At the same time his spasms and convulsions were becoming much more energetic and violent, causing him obvious distress. At the end of September he was admitted to hospital to fit a naso-gastric tube for feeding and to establish a programme of medication to control his spasms and convulsions. In early October, he returned to hospital for fitting a gastrostomy tube (GT), following which he returned home where he has since remained. Since October, 1993 there has been remarkably little physical change, but the family recognises that his level of awareness has diminished a lot. He almost certainly sees nothing meaningful but definitely hears and responds to peoples' voices, as he does to touch. He has continued to grow of course and is now a fully grown adult who is more difficult to move around. He has remained very stable now for a number of years and, according to his neurologist, it is not clear whether this means that the condition has resolved or whether a new immunological balance between the body and the virus has been attained. Nevertheless, his condition is only expected to deteriorate. It is the family's intention that, with the exception of some occasional respite care, he will remain at home. What is SSPE? Sub-acute Sclerosing Panencephalitis (SSPE) is a neurological condition caused by measles. There is a hypothesis that the measles vaccination itself be the cause of 1 in 10 cases of SSPE although the evidence for this is questionable. The condition is extremely rare with an estimated occurrence caused by the 'wild' virus of 1 in 1 million children. The statistics would lead us to the conclusion that we can expect no more than approximately 20 cases in the UK at any one time. It is hardly surprising then that very few people, even medical or care professionals, will have even heard of SSPE let alone had any first hand experience. SSPE is not to be confused with the more common form neurological damage caused by measles. SSPE is a progressive neurological condition, a terminal illness characterised by a delayed onset where the first symptoms may not be seen for 5 to 15 years. Typically a child may have many years of perfectly normal childhood before the first signs of problem present themselves. At the onset , the clinical features include emotional and intellectual changes, but as the disease progresses, patients become quickly debilitated. In the final stages of the disease, coma occurs, eventually leading to death. The medical professionals describe the disease in four stages: 1. Behavioural - Reduced intellectual ability, withdrawal, regressive speech and nervous ticks. Movements or ticks are very regular at a rate of several per minute. 2. Movement - General lack of co-ordination, stumbling, strange postures, problems with walking , eating and further loss of speech. Nervous ticks develop into more pronounced jerks involving the whole body. Anti-convulsant and muscle relaxant medication becomes necessary. 3. Reduced responsiveness - Unable to walk or talk. Completely bedridden and very unresponsive to almost any stimuli. Convulsions become stronger and cause more discomfort requiring the additional medication in the form of sedation. 4. Coma - A vegetative state with definite periods of wakefulness and sleep. Feeding by naso-gastric (NG) or gastrostomy (GT) tube. Muscular movements becoming less pronounced. Partial or total loss of sight. Random eye movement patterns. Startles to sound. Occasionally cries or laughs in response to handling. Our son entered the fourth stage of the disease in September 1993. What causes SSPE? The short answer is measles. The measles virus enters the body through the airways and diffuses to the blood stream via the lungs. In most cases this will provoke a normal immune response where the body's natural defence mechanism will produce antibodies within the blood stream that will combat and defeat the disease. In these cases, subsequent analysis of the patients blood stream will reveal the presents of measles antibodies which confirm future immunity. Usually, the measles virus, like other viruses, will not penetrate the Cerebral Spinal Fluid (CSF). The CSF is a protective fluid that circulates round and bathes the brain and spinal cord. There is no open path of circulation between the CSF and the bloodstream. However, in the case of SSPE patients, measles antibodies are found not just in the blood stream but also in the CSF. This is clear evidence that in these cases the measles virus, for whatever reason, has penetrated the CSF and therefore the brain and spinal chord. From there the virus spreads gradually involving more and more of the brain and nervous system. Why so much time can elapse before this process should become evident is unknown. The reason that SSPE should develop from a measles attack is not fully understood, but the most promising theory involves mutational defect of the measles virus itself which affords it the capability of transfer to the CSF and ultimately to brain tissue where budding of the virus may take place. It is suspected that host response causes the mutation which may explain the rare occurrence. Why any given individual should produce this response is also unknown. Contacting the Family We would be pleased to talk with anyone in similar circumstances. We have been caring for our son now for many years and have built up knowledge and a regime that helps the family cope. We are happy to share this as well as learning from others. Over the years the family has derived strength from talking with other families caring for children with SSPE. If you are interested in getting in touch, please e-mail the family at the following address [EMAIL PROTECTED] http://freespace.virgin.net Dear Mba Tika, Berikut ada artikel tentang SSPE dari Manila Times magazines Saturday, April 20, 2002 What is SSPE? A progressive, degenerative disease in children is catching many mothers unaware today. It is a virus that results from the simple and preventable childhood measles, called Subacute Sclerosing Pancephalitis or SSPE. If untreated, SSPE can lead to stupor, dementia, central blindness, rigidity and death. SSPE has an incubation period of seven years and the virus lives in the body. And it attacks mostly male children. The SSPE Children Care Foundation raised sufficient funds to take care of one patient, Benjamin Raypon of San Pedro, Laguna, 17 years old and a bread earner of a poor family, with SSPE Stage II-B. Dr. Thaddeus Jose B. Bayana, Resident in Charge at the Pediatrics Neuro Section of the Philippine General Hospital, recommended him on Feb. 14, 2002 for assistance on IVIG transfusion. He received 36 vials from the foundation. Benjamin's illness first manifested itself when he started getting dizzy, sliding and then falling last October 2001. He was feverish for three weeks after which his head began bobbing up and down uncontrollably. When brought to PGH in November from San Pedro, Laguna, he was diagnosed to have SSPE. But for lack of money to have the boy treated, they returned to Laguna. On Feb. 10, 2002, the boy was again brought to PGH because he was stiffening and jerking. This time, the mother begged the doctors to help save her son's life. Luckily, the SSPE Children Care Foundation had the funds to help Benjamin and he was soon able to undergo IVIG Immunoglobulin transfusion. With several prescriptions in tow, Benjamin headed for home after the IVIG treatment. A journalist gifted him with a wheelchair; otherwise, his stepfather, mother and a brother would have had to carry him in their arms to board a Laguna-bound bus. SSPE can be very frustrating yet this disease is completely preventable. As mentioned, SSPE is a complication of recurring measles infection. If we prevent the child from getting measles it would mean protecting the child from SSPE. In the Philippines, measles vaccine is routinely given to babies nine to 12 months, and given for free as part of the government's immunization program. It was noted that measles vaccine res-ponse of younger children under one year of age appear to be less complete because of the presence of the mother's antibodies. Thus, a booster dose is required six to nine months later or 15 months of age or older. EPI (Expanded Immunization Program) no longer covers the booster dose. Perhaps this is one reason why measles manages to creep in spite of the government's effort. The required second dose given at age four to six or 11 to 12 and the recommended booster dose for age 15 months can be addressed by immunizing the child with another dose of measles vaccine, preferably a trivalent vaccine of mumps, measles and rubella, especially when administered at 12 months and older, because not only that the child is given routinely recommended second dose for measles but also the child is provided with optimal protection for mumps and rubella as well. According to the Department of Health figures, measles remains a leading cause of death among children in the Philippines. As mothers and the SSPE Children Care Foundation are finding out, it is also a mother's wellspring of grief, lamentation and despair. But the Foundation is working hard, hand in hand with caring doctors and concerned and generous donors, to cap this source of affliction and nip SSPE in the bud, by beginning a serious information drive on the deadly after effects of measles. SSPE is a lifetime disease and there are currently 12 patients in the PGH list waiting for assistance for IVIG. Generous donors may contribute Intravenous Immunoglobulin or IVIG vials that can be purchased through Vizcarra Pharmaceutical. Cash donations may be deposited at the SSPE Children Care Foundation Current Account 0291-0369-96 and Dollar Savings Account 0294-0271-49, both at the BPI Forbes Park branch or e-mail [EMAIL PROTECTED] or call 522-1905, 522-5185 or 89. The foundation works closely with PGH doctors headed by Dr. Aida M. Salonga, chair, Section of Pediatric Neurology, Department of Neuro Sciences, UP-PGH, Taft. --------------------------------------------------------------------- >> Mau kirim bunga hari ini ? Klik, http://www.indokado.com/ >> Info balita, http://www.balita-anda.com >> Stop berlangganan, e-mail ke: [EMAIL PROTECTED]
