Travel for Russell-Silver Syndrome

Russell-Silver Syndrome (RSS) is a medical disorder that is characterized by stunted growth before and after the baby is born. Babies suffering from this disorder have low weight at birth. They also fail to grow normally or gain weight at normal rate.

There are quite a number of healthcare facilities in the United States from where patients suffering from RSS can seek medical treatments. However, patients and their loved ones must travel in order to access these facilities. Insurance plans only cover treatment costs and not travel expenses. You therefore need to plan well ahead in order to keep your travel expenses down. If you already have a healthcare facility in mind for treatment, consultation or second opinion, you can go ahead and pan for your travel. Otherwise, you can check our list of medical facilities that offer RSS treatments.

In case you are unable to meet travel expenses on your own, you can check our directory of charitable organizations that help in arranging cost-free travel for medical treatments.

About Russell-Silver Syndrome

This condition is caused by very infrequent genetic defects. The frequency of the disease across the world is approximated to be between one in 3,000 and 1 in 100,000.

Diagnosis of RSS is usually challenging due to the fact that doctors may not be conversant with the condition. However, medical specialists can help in diagnosis of the condition and help in deciding the best treatment options.

Symptoms of Russell-Silver Syndrome

There are quite a number of symptoms of Russell-Silver syndrome most of which are present at birth. Other symptoms appear in early childhood. Most patients suffering from RSS have normal intelligence, but they may slow in reaching early milestones of development.

The main symptoms of RSS include the following:

  • Stunted intrauterine growth (small stature at birth, below the 10th percentile)
  • Below-average after-birth growth in length or height (below the 3rd percentile)
  • Normal head circumference (between the 3rd and 97th percentile)
  • Limb, body, or facial asymmetry

Minor symptoms are as follows:

  • short arm span, but normal upper-to-lower-arm-segment ratio
  • fifth-finger clinodactyl (when the pinky fingers curve toward the fourth fingers)
  • prominent forehead
  • triangular-shaped face

Other symptoms that may occur with RSS include:

  • hypoglycemia (low blood sugar levels)
  • changes in skin pigment
  • feeding difficulties (in infants)
  • Body asymmetry: one side of the body grows more slowly than the other
  • Gastrointestinal disorders (acute diarrhea, acid reflux disease, etc.)
  • Continued poor growth with no “catch up” into the normal centile lines on growth chart
  • Low muscle tone
  • Occasional precocious puberty
  • Gastroesophageal reflux disease
  • Late closing of the opening between the heart hemispheres
  • A striking lack of subcutaneous fat
  • Constipation (sometimes severe)

Without hormonal treatments, male adults reach 4’11” in average height while females reach 4’7″.

Causes of Russell-Silver Syndrome

Most patients suffering from RSS do not have family history of the disease. What causes the condition is not known. However, recent research points to the direction of a genetic element that possibly follows maternal genes. 60 percent of cases are as a result of defects on a specific chromosome. In 7-10 percent of cases, maternal uniparental disomy (UPD) of chromosome 7 is responsible. This is a situation where the child receives two number 7 chromosomes from the mother instead of one each from the two parents.

Where to Go for Russell-Silver Syndrome Treatments

There are many healthcare facilities from which you can go for Russell-Silver Syndrome treatment and management. These facilities are equipped with proper equipments, staff and medications to ensure that patients receive the best treatments possible. Among some of the best hospitals for RSS include the one below;

  • Seattle Children’s Hospital

This healthcare facility offers some of the best treatment options for RSS in the country. The center is equipped with resources that make it possible to provide the best medical interventions for the disease. It also has a research laboratory for the condition. If you are looking for a facility to travel for Russell Silver Syndrome, Seattle Children’s Hospital is a good choice. Plan your travel now.

Treatment of Russell-Silver Syndrome

Russell-Silver Syndrome is congenital. The first years of life are very essential in the development and growth processes of the child. Treatments of this syndrome are aimed at management of symptoms in order to help the child develop as normally as it can be possible.

Parents suffering from RSS and wishing to have babies should be sure to consult a geneticist beforehand. The chances of passing down the syndrome to the baby are low but should well be considered.

In the process of treating RSS, the doctor may consider consulting a number of experts to make proper and informed diagnosis. The signs and symptoms associated with this syndrome are most pronounced during infancy and early childhood. This makes diagnosis even more challenging in older kids. Parents should consider asking their doctors for referrals to specialist in order to have thorough analysis of the syndrome.

Medical experts that you and your doctor may consider for consultation may include the following:

  • geneticist
  • nutritionist
  • gastroenterologist
  • endocrinologist

Some of the treatments that can help in promoting growth and development of the child include the following;

  • growth hormone injections
  • a nutrition schedule with specified snack and meal times
  • luteinizing hormone-releasing treatments (a hormone released in females to trigger monthly ovulation)

Some of the treatments that can help correct and accommodate limb asymmetry include the following:

  • corrective surgery
  • shoe lifts (inserts used to slightly raise one heel)

Treatments aimed at encouraging social and mental development include the following:

  • speech therapy
  • language therapy
  • physical therapy
  • early development intervention programs

Genetic Counseling

RSS is a genetic condition, and people with RSS only rarely pass it on to their kids. People with this syndrome should think of visiting a genetic counselor. This expert can explain the chances of your child developing RSS.

Children with RSS should receive regular monitoring and testing. This can help ensure they meet developmental milestones. Most people with RSS will see their symptoms improve as they enter adulthood. Symptoms of this syndrome will naturally improve with age and proper interventions.

Risks Associated with Russell-Silver Syndrome

There are quite a number of risks that are associated with Russell-Silver Syndrome. These risks include the following;

  • Gonadal hypofunction or testicular cancer in males
  • Low muscle mass or low bone mineral density
  • Metabolic syndrome
  • Myoclonus dystonia (in people with chromosome 7-related RSS)
  • Uterine and vaginal dysgenesis (in females with 11p15-related RSS)

Who Can Go for Russell-Silver Syndrome Treatments

Individuals who are experiencing the RSS syndromes should seek medical treatments as early as possible. Parents that have a history of genetic disorders should be sure to go for genetic counseling when thinking about getting babies. Additionally, parents suffering from other genetic disorders should seek medical interventions to rule out or prepare for possibilities of RSS. Expectant mothers and their loved ones should go for prenatal screenings where they can have the possibilities of genetic effects examined and taken care of.