Below we answer some of the most commonly asked questions about hemiplegia. If you would like more information on any of these subjects please read our publications, call our Helpline or contact us.
How does hemiplegia occur?
The causes of hemiplegia are mostly unknown, and parents will usually only become aware of their child’s hemiplegia gradually during his or her infancy. Hemiplegia is caused by damage to some part of the brain, often because of a small stroke or bleed. This may happen before, during or soon after birth, when it is known as congenital hemiplegia, or later in which case it is called acquired hemiplegia. There is a higher risk of hemiplegia occurring in premature babies and it is unclear whether a difficult birth may be an occasional factor. However, a difficult birth may be a result of damage that has already occurred.
What did we do wrong?
Hemiplegia is a condition that generally arises from a bleed in the brain (see above) and researchers have as yet been unable to isolate any contributory factors – it would appear to be mostly a matter of chance. A research study on twins, where one twin has hemiplegia, suggests that nothing the mother (or father) did or didn’t do during the pregnancy affected the child’s hemiplegia.
Will the hemiplegia get better or worse?
Hemiplegia as a condition does not change very much. However, as your child grows older you may find that it affects more aspects of their development than is immediately obvious. Conversely, with continued and regular therapy the effects of hemiplegia can be lessened. When your child is older you may find that they can be encouraged to take up a sport or hobby which will have a therapeutic effect as well as boosting their self-confidence.
Are there other problems associated with hemiplegia?
Yes, there may be. Approximately half the children do have additional problems. Some of these are medical in nature, such as epilepsy, visual impairment or speech difficulties. In the last few years it has also become clear that many children have less additional problems, such as perceptual problems, specific learning difficulties, ADHD, or emotional and behavioural problems. As the child grows these problems may become more frustrating and disabling than the more obvious physical ones, but with specialist help their effects on the child’s life can be lessened.
What can be done to help my child?
Hemiplegia cannot be cured, but a lot can be done to lessen the effects. When your child has been diagnosed you are likely to be referred to a Child Development Centre or the children’s department of your local hospital, where therapists will work with you to develop your child’s abilities. The immature brain is very flexible, and many of the functions of the damaged area can be taken over by undamaged parts. With children, in particular, it makes relatively little difference to their general development which area of the brain was damaged. Your child’s treatment will probably be based on a multi-therapy approach, involving physiotherapy, occupational therapy, and speech therapy where necessary. Therapists work closely with each other and with parents, teaching them exercises and techniques which they can continue to use at home, so that they become part of the child’s everyday life. In general the child with hemiplegia should be treated as normally as possible. However, it is essential to include the weaker side in play and everyday activities to make your child as two-sided as possible. Encourage your child to join local clubs or to become involved in team or individual sports, it all helps to build self-esteem and, with many sports and hobbies, acts as its own therapy.
My daughter’s doctor has offered her a MRI scan. What is it and will it help?
A Magnetic Resonance Imaging scan is sometimes offered to parents who want to know more about how their child developed hemiplegia. Although it can help explain when and where the bleed was in the brain, it will not actually change or alter any diagnosis or treatment. Some parents find the images very reassuring as a scan can often tell the doctor when the brain damage occurred during pregnancy, but others can find it disturbing and upsetting to look at images of their child’s brain. Should we both go back to work now our child has been diagnosed with hemiplegia, or will she need continual physiotherapy from one of us? The decision whether to work should be entirely yours. There is no doubt that your child will need intensive physiotherapy, but if you have good childcare there is no reason why they can’t give your child the therapy he or she needs.
My son has just been diagnosed with hemiplegia. What does the future hold for him?
When a child is first diagnosed with hemiplegia, it is often very difficult for a doctor to predict whether his problems will be mild or severe later in life. Doctors, specialists and therapists will often adopt a “wait and see” approach that many parents find difficult to cope with as they want concrete answers there and then. The way forward is to gain a greater understanding and awareness of hemiplegia and discover how best you can help your child achieve his full potential. Make good use of the specialists dealing with your child’s hemiplegia. Do ask them questions and make sure you understand their replies. And if you don’t, do take advantage of HemiHelp’s helpline – 0845 123 2372.
My child is not crawling: will he be able to walk?
Many children with hemiplegia do a kind of ‘bottom shuffle’ instead of crawling, but this is very normal and just means trouser bottoms wear out instead of trouser knees! Nearly all children with hemiplegia will eventually walk, although they may be a little later than their peers. Some children have other problems in addition to their hemiplegia and these may have an impact on walking.
Will my child be able to go to mainstream school?
Most children and young people with hemiplegia attend mainstream school, with or without some extra support. If a parent feels that their child needs extra help at their nursery or school, and possibly a Statement of Special Educational Needs, it is best to contact a body that specialises in helping parents sort through the often complex application process. For further information contact our helpline or send for our useful names and addresses booklet.
Will my child have bladder control?
In general all children with hemiplegia have full bladder control but it might be slightly later than average. However, because of the difficulty some children have with undressing, they might have a lot of ‘accidents’ at the beginning. Trousers with elasticated waists make life easier for a child – see our information on Dressing.
Will my child be able to drive?
Many people with hemiplegia are able to drive a car, although they usually need automatic gears, power steering and steering and indicator adapters. They will not, however, be able to obtain a licence if they have epilepsy or severe eye problems. When he does eventually apply for a licence, he will be assessed by a special disability-driving assessor, who will decide what kind of adaptations he will need on his car. There are various centres around the country where your child can be assessed and who will put you in touch with specially qualified instructors. For further information see our Driving page.
Will my child be bullied at school?
Any child with anything that makes them look or behave slightly ‘differently’ from their peers is at risk from bullying. Ultimately, it is the school’s ethos and attitude towards bullying which is crucially important. A child will find it much easier to cope with teasing if he or she feels secure and integrated in school life. Other children will usually accept their classmates’ differences if it is talked about in class.
My child needs a splint. Will she always have to wear one?
Splints are used to help keep a child’s wrist, thumb or foot in its correct position. For as long is she is growing, the splint may be used as one method to help her use the affected limb in the correct way. Splints may not be needed after she has stopped growing.
My child has just been diagnosed with hemiplegia, will he get epilepsy?
About 30% of children with hemiplegia will have a seizure, and of these approximately two thirds will have further seizures and will require medication. It is not possible to predict who is going to heave epilepsy but the majority who are going to do will have a seizure before they are four years old. Very few children have a first seizure after the age of 10.
If I have another child will it also get hemiplegia?
If your child has acquired hemiplegia, which results from damage to the brain during childhood, you have exactly the same risk of any other person of another child getting hemiplegia – approximately one in a thousand. If, however, your child has congenital hemiplegia your risk is slightly increased although it is still extremely unlikely to occur again. You can ask for a genetic test to determine whether there is any genetic reason for your child to have had a bleed, but there is only a 1 to 2% chance of this.
What does it feel like for my child?
It is always difficult to answer a question where the individual experience of living with hemiplegia varies greatly from child to child, although a few generalisations are possible. Most children say that their affected hand feels heavy, tense, or tired and stiffer than the other side and that these feelings greatly intensify after exercise. Many feel hot or cold temperatures more acutely with the affected hand, although in others the feeling is so impaired that the child can not tell the difference between the two temperatures. Children sometimes say that when they touch something with their affected hand it is as though that hand is wearing a very thin glove. Most children say that they forget their hand is there – which is when their hand closes into a tight fist. Very few, if any, children complain of pain, tingling or numbness in the affected limb.
Is my child entitled to any state benefits?
Any child with a disability or illness who has problems getting around, needs help with personal care, or help with both of these is entitled to apply for Disability Living Allowance (DLA). Children can only get DLA for help with getting around if they are five years or over and help with personal care if they are three months old or over. The rate of DLA a child gets depends on the amount of help they need – there are three rates. The forms are available from any social security office. When filling the forms in make sure you get advice from people who can help such as your health visitor, consultant, or doctor. If your child qualifies for the middle or highest rate you, as the main carer, may be entitled to Invalid Care Allowance. Further information can be found on the Guidelines for Completing DLA Forms.
My child is irritable, has tantrums and has obsessive behaviour, is this common?
Irritability and tantrums are very common in hemiplegia (about 25% of parents describe similar kinds of behaviours). Some children with hemiplegia seem to be born like it and others seem to develop more irritability as they go along. We do think that this tendency towards increased tantrums and outbursts when things don't go your way is directly related to the effects of underlying brain reorganisation - see our section on emotional and behavioural problems for further information.
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