Living with a child with a severe form of Hunter syndrome
In early childhood, children with severe syndromeHunter may be hyperactive, strong, usually cheerful, but very quickly get tired. They underestimated the degree of concentration, their mental age below the age of physical development. Such a child may, for example, to lock the bathroom door, but is unable to understand how to go back, even when an adult many times to explain it. They love to play rough devastating, creating noise and throwing toys for these children more game. They may be unaware of the dangers, stubborn and undisciplined, as it is often simply can not understand what is required of them. Some children may have a flash of aggressive behavior. Some may be for some time to use the toilet, but most uses diapers. Parents of such children is problematic just to sleep. They should not hesitate to ask for advice from the doctor about the child disinhibition and adjusting his behavior.
Hyperactivity - regular and sometimes veryserious problem of children with MPS. Many children with Hunter syndrome go through a stage of hyperactivity. They are very difficult to manage, they are unaware of the danger. Giperdeyatelnost reaches a peak during the maximum development of the child, and then slowly decreases as the child begins regress. The most optimal solution can be adaptation to the child's home to ensure it increased security measures because hyperactivity is not treated. Very valuable is the presence of the space in which the child can safely run.
It may be helpful if the child canto join a group of children playing, going to school or day care center, where various activities will take the child. The ideal solution availability time period would be a child, for whom he could spend its energy. It will also allow the child as long as possible to maintain acquired skills. Many children calm down in a moving car and generally well disposed to travel. Some children with Hunter syndrome is very uncomfortable in a noisy and hectic environment. Some parents find it very useful to allocate a child with Hunter syndrome a part or an entire room in the house.
Boys with Hunter syndrome love to eat, butSome may have restrictions on food. Often they drink plenty of fluids. Many have can not learn to use a knife, fork, and even regular cup, and ultimately may need to feed your baby as a newborn. The child may be unable to chew and swallow. In this case, the child's diet should consist of cereals and purees.
When a child can not chew and has difficultyswallowing, there is a risk of suffocation. Food, especially meat should be cut into very small pieces, but even with this precaution the child can suffer suffocation. If this happens, it is necessary to quickly turn upside down. You can put his head down on his knee, and 3-4 times to knock vigorously between his shoulders. Keep in mind that such tapping not allowed when the child is in an upright position - in this case, the child will breathe in more frequently than cough that worsen asthma. If necessary, put your finger down the baby's throat to dislodge the jammed piece.
A more quiet stage
Changing from an overactive busy period tocalmer usually occurs gradually. Parents noticed that their son is no longer worn sitting everywhere and more often than running or jumping. Many of the boys in this stage of disease progression pleasure in browsing through the same small book with pictures and stories that are read to them. They often literally can sleep on the go.
Weight will decline slowly as muscleswill atrophy. Very rarely, towards the end of a child's life can be different and the exacerbation of seizures, which usually are removed medicines. May become more frequent chest infections. Many children die quietly after infection or phasing out of the heart.
Living with a child with a mild form of Hunter syndrome
Children with a mild form of Hunter syndrome as ausually completely different in behavior from healthy children, they are often gentle, sunny children. From time to time they may be unrestrained in frustration when their physical limitations make life difficult. It should be encouraged manifestations of their independence, because the majority of adults with moderate form of Hunter syndrome can live a full and vibrant life.
Teenage years for these children can beparticularly difficult. Judge for yourself. If ordinary teenagers are experiencing due to acne on the chin, think about what are for a teenager with Hunter syndrome feelings about their appearance and about the limitations imposed by their state of health. They just need help, understanding, encouragement, good and kind word.
Many adults with the mild form of the syndromeHunter find satisfying work. Some get married and have children. So there are good reasons to encourage your child to sindroom Hunter conduct a full and independent a life as possible.
Help your children
Talk to your children about Hunter syndrome
Parents of children with Hunter syndrome is very difficultdecide what information about the disease to inform his patient and healthy children. While some try to hide information from children, to avoid unnecessary trouble, better to be as open and honest. Keep in mind that your children, including a sick child can be very insightful. They are likely to know that the parents are not completely honest with them, and they can develop a sense of confusion and distrust. Information corresponding to age, children should be fed in small doses, it should correspond to the children's level of understanding. Parents should be sure that their children know that their parents will answer any of their questions about the disease. Answers to the questions should be honest and direct, but still need to match the child's age.
Help your child with Hunter syndrome and his brothers and sisters to cope with their experiences
Parents are often faced with the difficult taskhelp your children overcome problems emotionally connected with the manifestations of Hunter syndrome. For parents, it is very important to show your children the care and support, listen to them and talk to them about their feelings. Younger children may believe that Hunter syndrome - is a punishment for something they did. Seniors can hide their feelings and go away on their discussions with parents. It is important to reassure the child with Hunter syndrome, as well as healthy children, that the disease came from behind them. They need to know that they can always talk to their parents about all their worries and feelings without fear that they can be evaluated negatively or upset parents. Remember that children's thoughts and feelings about the illness may vary. You need to maintain this relationship with the children all the time.
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 are protecting their child with Hunter syndrome, without saying anything about the upcoming procedures that may be painful or uncomfortable. This can only increase the child's anxiety. Much better to prepare the sick child and his siblings for the upcoming procedures. They need to explain what is this or that procedure, who will implement it, what equipment will be used, whether or not will be pain or discomfort, and a period of recovery can be expected. Brothers and sisters may be concerned because of the fact that their parents spend a lot of time away from home, giving them less attention. They care about the result of the procedure being performed, their sorrowful cancel scheduled events in their own lives due to lack of parental time. But the possession of information about her brother they make them feel important and involved in the process of taking the medication, and, in addition, can minimize their anxiety and irritation and help in establishing healthy relationships with parents and sick brother. Keep in mind that you need to communicate to children the information in a form corresponding to the child's age. And you should encourage children to ask questions, if they have something I do not understand.
Give your children the freedom to choose
From time to time your child with Hunter syndromecan feel their lack of independence. It may feel as his brothers and sisters. Therefore it is very important for parents to give their children a certain freedom of choice whenever possible. Let your children discuss the menu for lunch or dinner, and when they do chores or play. Let your healthy children themselves decide when and what they can do for her sick brother.
Help your child with Hunter syndrometo normalize relations with the healthy brothers and sisters as possible. Parents should be to maximize smooth handling of all your 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 parents are encouraged to not only them, but also its other children to participate in activities that involve other children of the same age. Parents need to convey to all children especially due to Hunter syndrome.
Do not be afraid to punish your child with the syndromeHunter also, as his brothers and sisters. Many parents make the mistake of setting for a sick child permissible limits other than for healthy children. Remember that a child with Hunter syndrome in need of discipline in the same way as any other child. The clarity and firmness of parents contribute to rearing a child's sense of security. Appropriate discipline helps children learn to manage their own behavior. Parents should be sure that the requirements are the same as the discipline on the part of their son with Hunter syndrome, and by other children. This is very conducive to a healthy relationship between the children. Disciplinary requirements should be smooth every day both among children and between children and parents. For the good behavior of all children should be sure to praise. If the improper behavior of children, use of punishment. But do not rush them to apply to small children - give them a chance to improve themselves.
Spread between your children responsibilities. Children in need of responsibilities as well as discipline. Encouraging responsibility - one of the ways to help a child with Hunter syndrome in his quest for a normal life. Parents should think twice, giving the job a child with Hunter syndrome - the job should be his ability, it has to be completed successfully a child. It should be clear and understandable. Parents should not forget to celebrate and praise for successfully completed assignments. Siblings can help his brother with Hunter syndrome in parenting orders, surrounding him with their care. Do not forget to praise them as well.
Maintain and improve your systemdaily work as much as possible. Children prefer a daily routine that is consistent and expected. You must create graphics for all family members, although it is not always possible in a family with a child with Hunter syndrome.
Remember that your children may overhear you. You must be very careful when you speak within their earshot. It is important that children receive information from parents in accordance with their age. They also should not be involved in any disputes and conflicts associated with Hunter syndrome, which may occur in the home or medical institution. This can lead to feelings of insecurity and mistrust.
Prepare your child with Hunter syndrome, andalso equally and his brothers and sisters to the surrounding reaction. Not only the sick child, but also his brothers and sisters often do not know how or what to report the disease to others. Parents can help their children by offering various explanations consistent with their age, what it is the Hunter syndrome and it affects people. It is necessary to explain how they respond to the teaser and the fears of others. Worthy to answer the most tricky questions and teasers others who are not familiar with Hunter syndrome, children can greatly help the role-playing game.