Creekside Residential Care (CRC) offers specialized care for individuals with Prader-Willi Syndrome. Our 24-hour skill-based setting is one of the few residential programs of its kind in the area. Comprising of a medicallysupervised, individualized treatment program, CRC envisions changing the lives of many adults with Prader-Willi syndrome for many years to come.

Nestled in the quiet neighborhood of Rives Junction, our quaint setting provides the perfect place for living,particularlybecause of its home-like setup. The CRC residence offers a safe and supportive atmosphere to enhance individual strengths, while nurturing areas that require growth with patience and understanding.

CRC is a 6-bed home that offers specialized care and is licensed by the state of Michigan. Our treatment team comprises of experts from various disciplines that possess in-depth knowledge and experience with this rare genetic condition. Oversight is facilitated by a skilled team of multidisciplinary professionals consisting of the following:

  • Medical Doctor
  • Nurse Practitioner
  • Social Worker
  • Behavioral Specialist
  • Registered Dietitian
  • Physical Therapist
  • Occupational Therapist
  • Speech/Language Pathologist
  • Psychologist
  • Direct Support Professionals
  • Special Education Teacher

 Treatment Approach

CRC’s approach to the treatment of PWS is a unique combination of positive behavioral support, food security, nutrition and diet management, exercise, weight monitoring, counseling and education, skill building, and medication management. Through this support system,each individual lives within a safe, healthy, and positive community.

The following areas are the three key components to CRC’s Prader-Willi treatment program.

Weight Management

A dietician sees each individual we serve, who has PWS at least once every year. The dietician monitors their nutritional intake, establishes the Ideal Body Mass (based on age, gender, and height), and prescribes each individual’s allotted caloric-intake per day. The individual then personally tracks their caloric intake each day on a speciallydesigned calorie sheet. Prior to each meal, the individual sits down with their calorie sheet and indicates in writing, what they wish to eat. The caloric value of the food they choose is then deducted from their base calories, and a new total is generated. Once the total number of calories remaining reaches zero, the individual is done eating for the day. Our goal is to have individuals lose 1-2 pounds every week until their IBM is achieved and maintained.

Exercise Program

Exercise programs are established for everyone we serve, who has PWS according to their physical ability and their doctor’s recommendations. The exercise program is divided into “hard” and “easy” days. Hard days are done on a piece of exercise equipment and easy days are any form of continuous aerobic exercise. We start by identifying each individual’s target heart rate, based on age and gender. Our goal is to have each individual, exercise 85% of the available opportunities or more.

Once the target heart rate is established, we then focus on perfecting the individual’s exercise program. We do not want to start off as being too intense for fear of individuals refusing to participate. We start off with a program that each individual can complete which will effectively burn some calories and elevate the individual’s heart rate. Based on their individual heart rate and respiration, we fix the end-point for their exercise program. Once we have established an achievable hard and easy day requirement, we will gradually increase or decrease this criterion.This would be based on the individual’s level of fitness, their participation, and weight loss.

Behavior Modification

In addition to establishing healthy eating habits and some level of physical fitness, we also use Applied Behavior Analysis (ABA) to modifyeach individual’s behavior. We deal with issues such as: food stealing, skin picking, tantrums, elopement, and aggressive or destructive behaviors. We also teach individuals to: do their laundry, balance a checkbook, shop for groceries, cook their own meals, and safely access the community. To accomplish this, we ensure the establishment and maintenance of a predominantly positive social environment. We train staff to give clear contingencies and reinforce appropriate behaviors while ignoring or redirecting inappropriate behaviors. Members of staff are monitored monthly and reinforced for meeting competency criteria.

Characteristics of “Those Served”

Common behavioral features of PWS include; food seeking and overeating (hyperphagia), due to insatiable hunger, repetitive skin picking, compulsive behaviors, such as hoarding (particularly food) and arranging items, tantrums, stubbornness, mood swings, impulsivity, anxiety, and aggression. Individuals with PWS may also have many medical concernsincluding sleep disturbances/sleep apnea, scoliosis, and complications associated with obesity, diabetes, and a risk of heart failure.

Prader-Willi syndrome (PWS) is the most common, geneticallyidentified cause of life-threatening obesity in humans. Diagnosis and management of PWS requires a multidisciplinary approach and early diagnosis to achieve the best health outcomes. The primary features of PWS include:

  • A characteristic appearance featuring small upturned nose, narrow bifrontal diameter, dolichocephaly, down-turned corners of the mouth, distinctive eyes (described as almond-shaped), and strabismus
  • Infantile hypotonia that improves with age, though most remain relatively hypotonic
  • Feeding difficulties and failure to thrive in their early years
  • Hyperphagia and subsequent early onset of childhood obesity
  • Developmental delay/intellectual disability
  • Hypogonadism
  • Behavioral problems (temper tantrums, stubbornness, obsessive-compulsive behaviors, skin picking)
  • Small hands and feet
  • Endocrine disturbances, including growth hormone deficiency
  • Sticky saliva

Those with PWS, and the 15q11-q13 deletion, may also have hypopigmentation relative to family background.

Programming & Activities (See Activities Schedule)

CRC provides a variety of day options customized to each individual’s needs and choices. We are committed to creating opportunities, not only within our day & vocational sites, but the surrounding community as well. Daily programming and activities will fall into one of the following essential areas:

Self-Help Skills:Self-help skills in Prader-Willi syndrome varies widely. Skills such as washing, dressing, and feeding require fine motor control and planning.Older adults in particular, will need help with these daily tasks. Some people with Prader-Willi syndrome have poor temperature control and/or sensitivity, so may not select the most appropriate clothing for the weather conditions.  Furthermore, people with Prader-Willi syndrome may need assistance to adjust their bath temperature.

Mobility: Lack of muscle tone can make physical activity more difficult for adults, being less physically active. However, exercise regimes can be devised to encourage activity.

Communication Skills:Approximately 7 out of 10 individuals with Prader-Willi syndrome experience articulation problems which may lead to delayed language development. Speech therapy can be used in order to promote efficient use of language.

For most individuals with Prader-Willi syndrome, verbal ability is a relative strength.However, a small proportion have extreme language impairment.

Supports & Services

  • 24-Hour Awake Supervision
  • Individual ServicePlans
  • House Motivational Programs
  • Behavior Management
  • Exercise Programs
  • Dietary Plans
  • On-Staff Registered Dietician
  • On-Staff Registered Nurse
  • ILS Training
  • Leisure Time Activities
  • Community Integration
  • Case Management Services
  • Health Monitoring
  • Consultative Services
  • Respite
  • Educational Services
  • Pre-Vocational Training

 

 

Referral information should be forwarded to:  
Creekside Residential Care
Attn: Admissions
2055 Perrine Road

Rives Junction, Michigan Call or Email Us

Phone: 517-574-2401

Email: support@creeksideresidentialcare.com

 

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