Your child suffers from Hunter syndrome? It brings you many problems. Try to help not only your child, but also yourself. Live with a bright life.
Content
Accommodation with a child with a heavy shape of Hunter syndrome
In early childhood, children with a heavy form of Hunter syndrome can be hyperactive, strong, usually cheerful, but very quickly tired. They have understood the degree of concentration of attention, their intellectual age is lower than the age of physical development. Such a child can, for example, locked the bathroom door, but is unable to understand how to get back, even when an adult will explain to him many times. They love rude destructive games, creating noise and scattering toys for such children rather game. They may not be aware of the dangers, stubborn and undisciplined, since often they simply cannot understand what is required of them. Some children may have flashes of aggressive behavior. Some can use a toilet for some time, but most use diapers. Parents of such children are problematic just to sleep. They should not be embarrassing to ask the Council of the doctor about the disadvantage of the child and the adjustment of his behavior.
Hyperactivity
Hyperactivity - the usual and sometimes very serious problem of children with mucopolysaccharideosis. Many children with Hunter syndrome pass through the step of hyperactivity. They are very difficult to manage, they are not aware of danger. Hyperaity reaches a peak during the maximum child's development, and then slowly decreases, since the child begins the regression. The most optimal way out can be adaptation of the house under the child, ensuring in it measures of increased safety, because the hyperactivity is not treated. Very valuable will be the presence of space in which the child can safely run.
It may be useful if a child can join the group of playing children, attend school or a long-day learning group, where a variety of activities will occupy a child. An ideal solution for the child would be the presence of a period of time during which he could spend its energy. It will also save the acquired skills as much as possible. Many children calm down in a moving car and generally relate well to travel. Some children with Hunter syndrome are very uncomfortable in a noisy and fussy atmosphere. Some parents find very useful to allocate a child with Hunter syndrome part or a whole room in the house.
Food
Boys with Hunter syndrome love to eat, but some may have restrictions in food. Often they drink a large amount of liquid. Many can not learn to use a knife, fork and even a conventional cup, and ultimately may be required to feed your child as a newborn. A child can become unable to chew and swallow. In this case, the child's diet should consist of porridge and mashed potatoes.
Suffocation
When a child can not chew and has difficulties with swallowing, he has a risk of suffocation. Products, especially meat, should be cut into very small parts, but even when complying with this precaution, the child may suffer a suffocation. If this happens, it must quickly turn down the head. You can put it head down on your knee and knock out 3-4 times vigorously. Keep in mind that such tapping is unacceptable when the child is in a vertical position - in this case, the child will make breath more often than to flip out that he would aggravate the suffocation. If necessary, place your finger down the throat of a child to shift the stuck piece.
More quiet stage
The change from the hyperactive noisy period to a more calm usually happens gradually. Parents will notice that their son is no longer worn everywhere and more often sits than running or jumping. Many boys in this stage of progression of the disease find pleasure in browsing the same small book with photos or fairy tales that they read. They often literally sleep on the go.
Weight will slowly decrease because the muscles will atrophy. Very rare, closer to the end of the child's life, can various exacerbations and attacks, which are usually removed by medicines. Chest infections. Many children quietly die after infection or from gradual heart failure.
Accommodation with a child having a moderate shape of Hunter syndrome
Children with a moderate shape of Hunter syndrome are usually completely different in behavior from healthy children, often they are tender, sunny children. From time to time they can be unrestrained from disorder when their physical restrictions make life difficult. We must in every way to encourage the manifestations of their independence, because most adults with a moderate form of Hunter syndrome can live full and brightest life.
Teenage years for such children can be especially difficult. Judge for yourself. If ordinary teenagers are experiencing because of acne on the chin, think about what is for a teenager with Hanter Salter Syndrome about its appearance and the restrictions imposed by their health status. They just need help, understanding, encouragement, good and kind word.
Many adults with a moderate form of Hunter syndrome find satisfying their work. Some marry and harvest children. So there are good reasons to encourage your child with Hunter Syndrome to conduct a complete and independent life, as far as possible.
Help your children
Talk to your children about Hunter syndrome
Parents of children with Hunter syndrome are very difficult to solve what information about the disease convey to their patient and healthy children. Although some are trying to hide information from children to avoid unnecessary anxiety, it is better to be as open and honest as possible. Keep in mind that your children, including a sick child, can be very insightful. They will probably know that parents are not fully honest with them, and they can develop a sense of confusion and distrust. Information corresponding to age should be supplied to children in small doses, it must comply with the child's level of understanding. Parents must be sure that their children know that parents will answer their any questions about the disease. Answers to questions should be honest and straight, but at the same time you still have to match the age of the child.
Help your child with Hunter syndrome and his brothers and sisters to cope with their experiences
Parents often face difficult task of helping their children in overcoming problems in the emotional plan associated with manifestations of Hunter syndrome. For parents it is very important to show your children care and support, listen to them and discuss them with them. Younger children can believe that Hunter syndrome is a punishment for something that they did. Senior can hide their feelings and leave their discussion with parents. It is important to assure a child with Hunter syndrome, as well as healthy children that the disease has come because of them. They need to know that they will always be able to talk to parents about any of their concerns or feelings without fear that they can be assessed negatively or upset parents. Remember that children's thoughts and feelings of illness can change. You need to support this connection with children constantly.
Prepare your child with Hunter syndrome and his brothers and sisters to medical procedures
Children need to know what awaits them in life. Parents may think that they protect their child with Hunter syndrome, saying nothing about the upcoming procedures that may be painful or uncomfortable. It can only increase the child's concern. It is much better to prepare a sick child, as well as his native brothers and sisters for upcoming procedures. They need to explain why this or that procedure is being done, who will perform it, what equipment will be used whether there will be pain or discomfort, and what period of recovery should be expected. Brothers and sisters may experience anxiety due to the fact that their parents spend a lot of time away from home, paying them less attention. They are worried about the result of the procedure performed, they are grieved by the abolition of planned events in their own life due to the lack of parental time. But the possession of information about his brother, they forced them to feel important and involved in the treatment of brother, and, in addition, can minimize their concern and irritation and will help in establishing healthy relationships with parents and sick brother. Keep in mind that you have to convey to children information in the form corresponding to the child's age. And you have to encourage children to ask questions if they don't understand something.
Give your children freedom of choice
From time to time your child with Hunter syndrome can feel his non-abuse. This brothers and sisters can feel. Therefore, for parents it is very important to provide our children with certain freedom of choice whenever possible. Let your children discuss the menu for lunch or dinner when and how they will do home work or play. Let your healthy children themselves decide what and when they can do for their sick brother.
Help your child with Hunter syndrome normalize relationships with healthy brothers and sisters, as far as possible. Parents should be to the maximum degree of smooth in contact with all their children, and a child with Hunter syndrome should not be an exception. Recognizing that children with Hunter syndrome have special needs, it is important that their parents encourage not only them, but also other children to participate in the actions that involve foreign children of the same age. Parents must convey to all children features caused by Hunter syndrome.
Do not be afraid to punish your child with Hunter syndrome as well as his brothers and sisters. Many parents make a mistake by setting for a sick child other limits of permissions than for healthy children. Remember that a child with Hunter syndrome needs discipline just like any other child. Clarity and hardness of parents contribute to child education in the child. Adequate discipline helps children learn to manage their own behavior. Parents must be confident that the requirements for discipline are the same on the part of their son with Hunter syndrome and from other children. It is very promoted healthy relations between children. Disciplinary requirements must be smooth day by day both between children and between children and parents. For the good behavior of all children, we must praise. If the behavior of children is improper, apply penalties. But do not rush to apply them in relation to young children - give them a chance to correct themselves.
Distribute between your children responsibilities. Children need responsibilities as well as in discipline. Encouraging responsibility - one way to help a child with Hunter syndrome in his desire for normal life. Parents must think carefully, giving a task to a child with Hunter syndrome, - the task must be forces to him, it must be fulfilled by the child successfully. It should be clear and understandable. Parents must not forget to celebrate and praise for successfully completed tasks. Native brothers and sisters can help their brother with Hunter syndrome in the fulfillment of parental instructions, surrounding it with their concern. Do not forget to praise and their.
Support and improve your system of performing everyday work as much as possible. Children prefer such a routine of the day, which is consistent and expected. You must draw up graphics for all family members, although it is not always possible in the family with a child with Hunter syndrome.
Remember your children can overhear. You must be very attentive when you speak within their hearing. It is important that children receive information from parents according to their age. They also should not be drawn into any disputes and conflicts associated with Hunter syndrome, which may occur in a house or medical institution. This can lead to feelings of unreliability and distrust.
Prepare your child with Hunter syndrome, as well as equally and his brothers and sisters to the reaction of others. Not only a sick child, but also his brothers and sisters often do not know how or what to report illness to others. Parents can help children offering various explanations consistent with their age than is Hunter syndrome and he affects people. It is necessary to explain how to react to teasers and fears of others. Adequately answer the most trusted questions and teasers of others who are not familiar with Hunter syndrome, children can strongly help role-playing game.
