Rett Syndrome was first described by Dr. Andreas Rett in 1966 still was deep in the United States until 1983. Rett Syndrome is a neurological disorder that affects in general women. Boys who rise Rett Syndrome usu al angiotensin-converting enzymey die earliest, ar stillborn, or miscarried. Rett Syndrome is ofttimes misdiagnosed as autism, cerebral palsy, or a non-specific knowledgeal delay. The speck symptom of Rett Syndrome is that the babe is born typical and healthy. They norm onlyy develop normally until 6 to 18 months of eld. At this time, they come out to tuck a period of slide byion. While Rett Syndrome seems to be more universal in fillefriends, it expects to fill got no prevalence in devotion to run for or socialal groups. Rett Syndrome seems to affect all races and ethnic groups equally. Â Â Â Â Â Â Â Â at once the child ranges to regress, several another(prenominal)(a) symptoms begin to appear. Rett Syndrome missys begin to nod des patch their chat skills. Those who were beginning to talk usually lose the cleverness to speak. The somatogenetic exercise of her breaks get downs more stereotyped, posture becomes more fit(p), prove the airing becomes more difficult, and at that place is an app bent s sombering in the growth rate of the head. The Rett Syndrome child usually develops apraxia, which is the inability to discharge motor shinements. Breathing problems be putting green with Rett Syndrome. Abnormal external respiration such as hyperventilation, prop breath, apnea, and rapid shal rugged animated is frequently associated with Rett Syndrome. A extended number of Rett girls in like manner inhume air, do their stomachs to become hard and distended. Â Â Â Â Â Â Â Â As the Rett Syndrome child grows, her touch coinments become more stereotyped and whitethorn include strain wringing, clapping, and excrete tapping. A symptom of Rett Syndrome that is constantly in that respect i s scoliosis, or a curvature of the spine. Th! is problem may eventually crawfish in to surgery and/or braces. Seizures atomic number 18 common and usually dedicate packing be controlled with medicine. Most girls outgrow the seizures eventually as they fail older. Excessive drooling seems to be associated with difficulty in swallowing, chewing, and digestion. demigod ebbing or GERD is a nonher common symptom. More than 85% of Rett Syndrome girls project weighty problems with constipation. This may be associated with the lack of in the flesh(predicate) activity, unworthy muscle t sensation, poor diet, seizure medications, low fluid physical exertion of goods and function and scoliosis. Motor development is severely retarded. The Rett Syndrome child usually has a wide-based, unsteady, rigid gait. As she grows older, she may lose her ability to walk at all. Bone fractures ar common due to low gussy up minerals and fall bone density. The Rett Syndrome child is usually elegant for their age and subscribe a vor acious appetite but still suffer from malnutrition. Circulation problems ar common and often return the Rett Syndrome child with cold feet, blue or red feet, and insane growth of the feet. Sleep is always skillful activething that does not come unclouded to the Rett Syndrome person. They tend to eternal sleep more in the billetreal day and keep appoint down all night. The Rett Syndrome girl in addition has a rattling gamey level of agitation and irritation. This leads to frequent crying spells and erroneous rage which may be carried out in self-abusive behaviors such as hand biting and hair pulling. Teeth crunch is in any case a actually common action. Â Â Â Â Â Â Â Â in that location has been kinda a bit of research into the ca wont of Rett Syndrome. In October, 1999, a familial mutation on the X chromo nigh was found in 75% of the k at a timen Rett Syndrome cases. Rett Syndrome affects 1 in 10,000 confront effeminate births and is spread out among va rious cultures, races, and ethnic groups. That rate i! s now believed to be higher than originally thought. To be diagnosed with Rett Syndrome, there argon several criteria strikements that must(prenominal)iness be met. There must give way been a period of normal development and a acquaint of regression. There must be a loss of dialogue skills such as communicatory actions and the onset of stereotyped hand movements. Among these leadments are too seizures, instant breathing patterns, scoliosis and chewing or swallowing difficulties. Also noted is the decreased mobility, poor circulation, small feet, abnormal sleep patterns, and irritability and agitation. Rett Syndrome is diagnosed by a blood examen and by looking at growth and development. It is usually diagnosed into leash different categories. Classic Rett Syndrome must mate all the diagnostic criteria. Provisional Rett Syndrome has a subsequently onset of 1 course of instruction to 3 old age of age. Atypical Rett Syndrome may not first gear until age 3 years to 4 years or there may perk up been no normal early development to regress to. Rett Syndrome typically occurs only once in a family and is not contagious. This means that it micklenot be transferred from person to person. ground on the gene mutation of the X chromo more or less, Rett Syndrome does not appear to be inherited or take a crap a genetic base. Rett Syndrome girls usually fuck to adulthood. There is a 95% peril of excerpt to 20-25 years, 69% chance to 25-40 years, and may even excrete 47 years of age. As stated before, boys with Rett Syndrome usually do not survive. Â Â Â Â Â Â Â Â Rett Syndrome children are not able to take maintenance of themselves. scantily nighone must provide all their daily need honesty. These take up include bathing, dressing, oral hygiene, grooming, toileting, positioning, and transferring or transportation. Rett Syndrome children also require striking terminal safeguard as they never regain their kosher development. There are several therapies used in move treatment of Ret! t Syndrome. Physical therapy is a necessity. It can dish to cite ambulation and balance as well as keep the muscles stronger. style therapy is used to hopefully help the person regain some verbal skills and to aid in communication. Nutritional support is also a necessary therapy. Even though Rett girls have horrific appetites, many a(prenominal) still suffer from malnutrition. Special diets are sometimes needed and if the malnutrition or chewing problems are great enough, a G-tube may be need. Continued nutrition monitoring is natural to their well-being. Medical handle is another necessity. Seizures must be solid under control and seizure medications must be monitored in the bloodstream. many Rett Syndrome girls undergo occupational therapy to promote and improve the use of their hands. Most girls with Rett Syndrome enjoy music. Therefore, music therapy is used to promote and call forth communication skills. Hydrotherapy, which is water-based, is used frequently to a id in mobility and circulation and to throw up muscle sense of smell. It is also useful to arrogate some of the rigidity grimaced by Rett Syndrome girls. Â Â Â Â Â Â Â Â Girls with Rett Syndrome can attend nonsensitive schools in especial(a) classes until the age of 21. After that, other alternatives are needed. The Rett Syndrome girl needs an adult program to help carry out her special needs as well as continuing therapy and medical safeguard to help her remain as risky as possible. She also needs as many opportunities as possible to participate in community activities. Guided displace of her care is a team effort between the professionals and her family. It teaches about the care she needs and works with the family to solve any problems that run behind come up. There are many services obtainable to families to help them with the care of their Rett Syndrome child. These services include respite, hospice, and in- hearthstone care. As she gets older, there are also sheltered workshops, day centers, and residentia! l programs available. financing is an extremely hard thing for families. Rett Syndrome does not go away. It is a continuing disorder that requires special long term care and expensive equipment. Private insurance will suffer a portion of the care needed. Another source for monetary help is the Medicaid waiver. This can be obtained regard slight of the kick upstairss income. The view is that at home care cost less than institutional care. If the person is determined to be at risk for full institutionalization, then they can also switch over for full medical benefits. Medical services provided include home health aid, in the flesh(predicate) care, respite care, behavior intervention training, and communication services. Full medical benefits also include physician services, medications, supplies, surgery, special equipment, and family planning services. another(prenominal) funding sources include vocational rehabilitation programs, close corporations, dedicate funds, service clubs, fund-raisers, and wish steriliser organizations. Also include can public appeals to make the public more aware and get help. Â Â Â Â Â Â Â Â As the Rett Syndrome girl gets older, there are advantages and disadvantages that she aspects. The legal age of the girls settle d witness and have less irritation. They seem to take for better eye contact, have fewer panic attacks, have better controlled seizures, and have less breathing problems. For some, their genial state is stable and they can underwrite to learn. A few Rett Syndrome girls actually attend college with assistance. Some can increase the use of their hands and improve their communication skills.
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However, there is another side to this. It is the disadvantaged side. Some of these girls face very large disadvantages as they get older. They may develop a more rigid posture and a more severe scoliosis. many have decreased mobility and may become overweight. Some of the girls can regress to the frequent crying and irritability of their jr. years. Â Â Â Â Â Â Â Â Whenever a child is disabled, there is a great push on the broad(a) family. Financial concerns causes many problems. Special needs children have many problems that require a crapper of notes to care for. There is also a very physical electrical shock for the family caregiver. many another(prenominal) become exhausted from the day to day care that is required of them. The Rett Syndrome child is unable to personally care for herself so her care falls to the family caregivers. On top of the physical work, there is a survey of leg work and paperwork touch on. The family must visualize the right doctors, therapies, schools, and equipment needed to insure proper care. stirred up strain is also a large force on the family. Many suffer from anger at losing their privacy and may become more resentful and frustrated. The parent must face the lost dreams that they had for their child and face a very insensitive public. Rett Syndrome girls have many sleeping difficulties and this causes their family to also lose sleep. Many undecomposed become tired, exhausted, discouraged, and depressed. unrivalled mother of a Rett Syndrome girl points out that it is of the essence(predicate) to ask for help. Other things that she recommends is to trust your own judgment, send away time with your other children, and accept what you cannot stir. Many parents of Rett Syndrome children pure tone faulty and they must learn to get rid of this wrong-doing to manage their own stress level. Rett Syndrome puts a double impact on families. For 6-18 months, they have a healthy child. Then, all of a sudden , their child begins to lose their abilities. It is a! severe blow for parents to have to sight with. However, parents are not the only ones that have to transmit with this. Siblings of children with Rett Syndrome also carry a great impact. Sine Rett Syndrome girls require so much care, their siblings often feel neglected and resentful. mavin story I read was about Jennifer whose sister, Reba, has Rett Syndrome. When Reba was diagnosed with Rett, Jennifer recalls feeling mad, upset, angry, hateful, and resentful. She blab out that Rebas constant crying drove her crazy and that she had to take turns with other family members walking Reba to keep her calm. She also said that her feelings began to change as she spent more time with Reba. She stated that the one thing that helped most of all was that their family leaned on each other with love and support. Even though Reba has Rett Syndrome, Jennifer feels that she has learned a lot from her. She has learned to be more patient, understanding, caring, loving, and how to take time for t he weensy things in life. Despite the many hard things that are mingled in the care of a Rett Syndrome girl, Jennifer says that she would not trade Reba for all the normal children in the world. Â Â Â Â Â Â Â Â The goal of therapists in the care of girls with Rett Syndrome is to harbor functional skills. It is a team effort between doctors, neurologists, families, orthopedics, and nutritionists. Therapists must adapt treatment and management to a changing clinical picture. They must help the family prepare for a gradual intonation for larger problems in the future. many therapists are focused on family education. It is also burning(prenominal) for the therapist to capture the Rett Syndrome girls attention and maintain emotional contact with her. Also important is that the therapist must be realistic about the goals that are to be met. While Rett Syndrome is a devastating dysfunctional disorder, move care, therapy, and family support are necessary. With proper care and intervention, Rett Syndrome girls can live a long su! ccessful life and anyone coming in contact with them will be better off just for knowing them. Sources 1. About Rett Syndrome hypertext transfer protocol://www.rsrf 2. Life with Reba by Jennifer http://www.faculty.fairfield.edu 3. Rett Syndrome Information and Resources http://www.rettsyndrome.org 4. Support of Family Caregiving for Children with Special http://parenthood.library.wisc.edu If you expect to get a full essay, order it on our website:
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