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  • IF - About IF
    PR Assistance in further developing the website Development of the newsletters Development of press strategy Administration secretariat Help at the development of archiving system Internal and external communication Occupational therapy Translation of the IF knowledge developed in the North and the South into usable form for specific target groups Evaluation of existing material that is presented at our target groups Help at the development of the WHO manual on rehabilitation

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  • IF - Spina Bifida
    which cover the spinal cord meninges and cerebro spinal fluid This fluid bathes and protects the brain and spinal cord The nerves are not usually badly damaged and are able to function therefore there is often little disability present This is the least common form Myelomeningocele meningomyelocele Myelomeningocele is the most serious and more common of the two forms of cystic spina bifida Here the cyst not only contains tissue and cerebro spinal fluid but also nerves and part of the spinal cord The spinal cord is damaged or not properly developed As a result there is always some paralysis and loss of sensation below the damaged region The amount of disability depends very much on where the spina bifida is and the amount of nerve damage involved Many people with this condition have bowel and bladder problems because of damage to the nerves going to the bowel or bladder from the bottom end of the spinal cord Encephalocele This is a sac which is formed when the bones of the skull fail to develop It may contain cerebrospinal fluid only however part of the brain may also be present in the sac resulting in brain damage Anencephaly This is where the brain does not develop properly or is absent and the baby is either still born or dies shortly after birth Hydrocephalus Most babies born with spina bifida also have hydrocephalus from the Greek hydro water cephale head This is an accumulation of cerebrospinal fluid which arises from an imbalance in the production and drainage of that fluid How and Why Does Spina Bifida Happen At present the cause is unknown although research continues Our page on folic acid outlines the research results which led to the Department of Health issuing guidelines about the role that folic acid supplements play in reducing the risk of spina bifida in pregnancy provided they are taken daily from at least one month before conception and then through to the end of the 12th week of pregnancy The exact reasons why the tube develops incorrectly are not yet known but it is probably connected with both genetic and environmental factors Spina bifida is a defect which is present at birth In Britain incidence varies from one area to another Spina bifida is only partially hereditary However once there has been an affected pregnancy there is an increased risk of further spina bifida pregnancies The risk of an adult with spina bifida having a child with a similar condition is approximately 3 or 1 in 35 Spina Bifida Occulta This is a mild form of spina bifida which is very common Estimates vary but between 5 and 10 of people may have spina bifida occulta It must be emphasised that for the vast majority of those affected having spina bifida occulta is of no consequence whatsoever Often people only become aware that they have spina bifida occulta after having a back x ray for an unrelated problem However for a few about 1 in

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  • IF - Spina Bifida
    into the bladder through the urethra and removed when the bladder is empty This takes only a few minutes Vesicostomy an opening from the skin into the bladder below the navel to allow the bladder to drain freely into a pad or nappy Usually just temporary Renal anything to do with the kidneys Urinary tract infections Urinary tract infections are quite common in the general population They can be mild when they only affect the bladder cystitis or more serious if they affect the kidneys pyelonephritis When able bodied people have cystitis they generally need to pass urine more often than usual and they may have to hurry to the lavatory urgency Passing urine hurts or scalds and leaves them feeling sore and uncomfortable afterwards The urine looks cloudy instead of clear and may smell different from usual Because of the discomfort and inconvenience they soon go to their doctor for advice They are told to drink extra fluids and take the antibiotics prescribed and they get better within a day or two Cystitis is the commonest kind of urinary tract infection and it does not usually make the person ill A much more serious situation arises in pyelonephritis in which the infection affects the kidneys causing a high temperature tummy ache backache and sickness Fortunately pyelonephritis rarely occurs in people who can empty their bladders normally and so have good drainage from the kidneys But in people with spina bifida who cannot empty their bladders well it is quite a different story Why urinary tract infections are a problem in people with spina bifida People with spina bifida often lack feeling and control of their bladder and bowel in the same way as they may lack feeling and control of their feet and legs This is because the nerves in the spine connecting the brain to the bladder or bowel or legs have been interrupted or disconnected by the spina bifida The result is that they cannot usually feel when their bladder is full nor can they empty it properly The bladder still contains urine the residual urine after they have tried to empty it The stagnant pool or residual urine left in the bladder gets smelly and easily becomes infected and sometimes develops stones urinary calculi as well Infections may spread to the kidneys causing pyelonephritis and kidney damage making the person ill This happens because the bladder does not empty out the infected urine It may also happen in children with reflux in whom the infected urine travels up towards the kidneys Many people with spina bifida do not know when they have a urinary infection Because they lack feeling they do not suffer from the scalding pain which other people feel when they get cystitis nor do they know their bladder is not emptying properly Treating someone with spina bifida for a urinary infection with antibiotics and extra fluids works more slowly if the bladder is not emptying The best way to prevent urinary infections damaging

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  • IF - Spina Bifida
    introduce allergy screening for new staff and patients and to work out how to deal with patients and staff who have latex allergy The Department of Health s Medical Devices Agency has suggested that health professionals ask patients about previous allergic reactions to latex However some believe nurses should go further and ask patients about any food allergies as the two are cross related The mother of a case study says George seems an isolated case at the moment We re fighting for his problem to be recognised People don t believe it If he ever had to be admitted into hospital as an emergency I d have kittens They would have to suck all the air out of the operating theatre because even latex in the air can affect him A survey on latex allergies and Spina Bifida ASBAH is conducting its own survey to find out the extent of the problem among service users The Spina Bifida Association of America recommends that all individuals with spina bifida should be considered high risk for having an allergic reaction to rubber and should avoid contact with rubber products particularly during medical or surgical procedures In addition it says people who have experienced allergic reactions during surgical or medical procedures should consider wearing a medic alert bracelet or necklace The Spina Bifida Association of California issues medical alert cards stating that spina bifida patients often have a severe allergic reaction to latex P L May MBBS FRCS Consultant Paediatric Neurosurgeon and member of ASBAH s Medical Advisory Committee writes Severe reactions in patients exposed to the latex antigen was first described in 1984 Over the last few years however there has been an increasing recognition in the United States of the condition particularly with respect to patients with spina bifida and associated abnormalities The Food and Drugs Administration FDA in the United States has undertaken several studies to examine the incidence of reaction in spina bifida patients to latex either in the form of skin rashes or more serious manifestations of sensitivity In 1991 this incidence was reported to the FDA to be somewhere between 18 40 It was noted by the American workers that children appeared to be particularly at risk of hypersensitivity with this allergen The Medical Devices Agency in the United Kingdom has been monitoring the subject of latex allergy for several years because of concerns raised by American reports of increased incidents of latex allergy among healthcare workers and certain groups of patients At the present time there are no authoritative statistics which indicate the extent of the problems in the UK healthcare setting or in the general population From our own experience in the Royal Liverpool Children s Hospital over the last six months we have documented at least one episode of a major hypersensitivity reaction in a young female patient with spina bifida undergoing corrective spinal surgery The condition was recognised and she has made a full recovery The increased incidence of this sensitivity is

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  • IF - Spina Bifida
    every 20 minutes Lift your bottom off the chair and change the position of your legs This allows the blood to flow normally for a few seconds that is all it needs If it is too difficult to lift your bottom try to change position leaning forwards or to one side first and then the other Regular inspection of the skin Ideally the whole body should be inspected night and morning for signs of any redness or changes in the skin If you find a red patch and it disappears quickly after you have eased the pressure in that area there is no cause for alarm But if the red colour remains this could be the first sign of a sore developing A close eye should be kept on this area and no further pressure should be put on it A long handled mirror is very useful for inspecting the back and bottom Diet A good balanced diet is essential for both the prevention and healing of pressure sores An adequate intake of fluids helps to keep the skin supple and hydrated Complex carbohydrates bread rice pasta will keep the muscles healthy Iron rich food such as spinach will help the blood carry the oxygen around the body to the cells Vitamin C and zinc a mineral both help wound healing as does an adequate supply of proteins found in meat fish and dairy products Wear suitable clothing Avoid clothes that are too tight or have hard seams zips or buttons that might cause pressure Good fitting shoes with the feet put in properly are essential Take care when transferring from your wheelchair not to knock or drag the body Barrier creams such as Sudocrem Conotrane or Zinc and Castor Oil Cream can be useful protection for the skin against incontinence but the most important protection is to clean up and change as soon as an accident has happened Hospital admissions If you have to go to hospital and will be spending more time than usual in bed ring the ward and tell them before you go that you will need a pressure relieving mattress Operating theatres also need to be aware of your needs before you have an operation A visit before admission will be useful to you and to the staff If you have to visit the Accident Emergency Department do remind them as soon as possible of your high risk of developing sores The staff should then make sure that you are not left on a hand trolley or in a wheelchair without help to move around every 20 minutes or so Treatment If a sore develops it should be assessed as soon as possible by a specialist nurse or doctor who will grade it and start the most appropriate treatment There are many different products available for treating pressure sores and it would be impossible to list them all here However this is a rough guide If the skin is red but not broken a second

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  • IF - Spina Bifida
    their time in the wheelchair when other children are playing or working on the floor Being down on the floor encourages social inclusion as well as involvement in the same activities as other children For some small children other equipment such as a castor cart which is down at ground level may be appropriate for outdoor play SEATING Many children with spina bifida need special consideration of their seating Many children who walk may need a smaller chair or table because of short stature Some may need a footrest so feet are supported and not dangling This assists balance Correct desk height also assists fine motor skills Many children who use a wheelchair can and should sit in a normal classroom chair at pre school and school This makes them more a part of the group If it is more appropriate to sit in the wheelchair a special desk may be needed so the wheelchair fits under easily WALKING How well and how much a child walks depends on many factors besides how much movement he or she has Motivation is an important factor Some children love to walk and walk well with the appropriate gear For others it is a real chore There are many benefits of walking Improves fitness Helps prevent deformities e g keeps hips and knees straight and feet flat Improves strength of bones through weight bearing and exercise Improves upper limb strength needed by all for wheelchair use transfers etc as well as walking Improves bladder and bowel function gravity and exercise help with these Improves circulation and helps prevent pressure problems of skin More normal visual input Sometimes the child looks at the world from the same level as everyone else when standing Improves social interaction e g when standing at a table or

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  • IF - Spina Bifida
    supplements in the prevention of neural tube defects The trial was conducted at 33 centres in seven countries and the results were announced in July 1991 The dose given to women taking folic acid by itself was 4mg a day The women recruited to the trial and each child born during the trial were checked for possible adverse effects The infants continued to be monitored until their third birthday As yet no ill effects caused by folic acid supplements have been reported in either the mothers or their babies What does this mean in practice These results show that by taking a daily folic acid supplement a woman can reduce the risk of having another pregnancy affected by neural tube defect Women considered to be at higher risk of having a neural tube defect pregnancy include those who have had a previously affected pregnancy those who have an NTD themselves and those who have a family history of NTD or whose partner has a family history of NTD Women in these higher risk groups should take a daily 5mg tablet of folic acid for at least one month before conception and then throughout the first 12 weeks of pregnancy These 5mg tablets have to be obtained on prescription from a doctor At present the only tablets available on prescription in the United Kingdom contain 5mg of folic acid Some doubts remain that this dosage may be larger than necessary for preventative effect and it is 1mg larger than the amount used in the Medical Research Council trial The Chief Medical Officer says 5mg will be replaced by a 4mg tablet as soon as this dosage is available Women who have not been identified as being in a high risk group may also benefit from taking folic acid tablets These are

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  • IF - Spina Bifida
    allergies Pressure sores Mobility Prevention of neural tube defects Information for parents to be Living with SB testimonies Leaflets for adolescents with Spina Bifida Spina Bifida Information for parents to be I am pregnant with a child with spina bifida or hydrocephalus What now Why me Confusing feelings and emotions when you hear the news that your baby has spina bifida or hydrocephalus It is important to take some time

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