Treatment and Prevention

 
 
 
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This information was taken and adapted from Nathalie Boëls’ book: Le nanisme: Se faire une place au soleil dans un monde de grands, Ed., CHU Ste-Justine, 2008.

We cannot prevent dwarfism, but we can reduce the impacts it has on a person's life. From a very young age, people with dwarfism may require different treatments to help them grow bigger, correct certain musculoskeletal problems, maintain their physical condition, increase their mobility, and become more autonomous in their daily life, etc.

Growth Hormone Treatment
Limb Lengthening
Physiotherapy
Occupational Therapy
Osteopathy
Staying Healthy

Growth Hormone Treatment

Produced by a small organ at the base of the brain, growth hormones play a primary role in skeletal growth, fat and muscle cell function, the regulation of blood sugar levels and epiphyseal cartilage growth.

In some forms of dwarfism, growth hormone treatment can allow a child to reach its predetermined adult height by using that of its parents as a model – the child will not grow any taller than this. The treatment works best on people with Turner syndrome or hypopituitarism.

As growth hormones make the long bones grow, they can only be used in the case of disproportionate dwarfism; otherwise, the child will find itself with limbs too long for its trunk.

The final estimated gain is 5 – 7 cm on average. However, this average means that some children will not grow at all, while others will grow 10 cm more than the final predicted height. In any case, the results may vary, not only according to the kind of dwarfism, but also according to the child.

The hormone is injected once a day. The treatment can last for several years without posing any risk to one’s health. Younger children have a better chance of responding to the treatment because their bones are less mature.

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Limb Lengthening

Only applicable to certain types of disproportionate dwarfism, this treatment involves surgery, an orthopedic fixation device, and physical therapy. While the patient is under general anesthetic, a surgeon cuts the bone to be elongated (the femur or the tibia) and fixes pins at both ends of the bone. The patient then increases little by little the space between the pins, several times a day. This allows new bone to grow and fill in the empty space. Limb lengthening is a gradual process because the bone and surrounding tissues need time to regrow. The blood vessels nourishing the bone also need time to develop at the same speed as the bone.
Bones will increase, on average, by one millimeter per day until they reach their maximum of ten centimeters. A child could add a maximum of twenty centimeters to their original height. This maximum varies from person to person according to their health, their bone’s original length, and their response to the treatment. After the bone grows, it takes one month to completely heal for every centimeter gained. It thus takes almost thirty months to fully lengthen the legs! This may take longer if complications arise.
Limb lengthening is not only a long process but also an extremely painful one with little relief throughout the treatment. It is, therefore, hardly ever used in North America on children with dwarfism. North American orthopedic surgeons often use this technique only for people who have different-sized legs.

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Physical Therapy

Physical therapy diagnoses and treats a variety of conditions, including those related to the musculoskeletal system (muscles, bones, and joints) and the nervous system.


Some children with dwarfism suffer from kyphosis, hypotonia, or hyperlaxity (see the section Problems and Complications under Dwarfism). A physiotherapist helps parents teach their child how to control their head and trunk, sit up by himself, and get around from place to place. They can prescribe exercises to strengthen the muscles of the arms, shoulders, and shoulder blades, and maintain core strength. Exercises to stretch out the hip flexors and lower back muscles will help correct an eventual lordosis. A physio begins working with a child a few weeks after it is born. They modify their method of intervention and program according to the child’s progress as it grows.

Occupational Therapy

An occupational therapist can help in essentially two areas:

- Physically readapting a person to reach a maximum level of autonomy in their daily activities (household chores, personal hygiene, cooking, etc.), work, and leisure time.

- Adapting a little person’s environment and activities to their capacities.

An occupational therapist helps parents learn how to properly adjust the car seat and, if the child has a pronounced hypotonia, how to position its high chair. An occupational therapist will help someone with disproportionate dwarfism learn how to dress themselves (put on a shirt, lace up their shoes...). They will also evaluate their patient’s ability to cover long distances and the possible need for a wheel chair. An occupational therapist is also a key spokesperson when adjustments need to be made to the school, work, or home environment.

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Osteopathy

More and more parents are taking their child with dwarfism to see an osteopath to try to encourage their motor development, help them regain as much freedom as possible in their movements and ability to get around, and allow them to sit and stand up faster. In general, adults with dwarfism go to see an osteopath to ease pain caused by compressed nerve fibers in their lower back (see the section Problems and Complications under Dwarfism).

Osteopaths cannot fix some conditions related to chronic problems. For example, they cannot cure problems related to dwarfism such as short limbs, a disproportioned trunk, or a smaller/larger head. Their goal is more to help people regain movement and to relieve them of muscular tension or joint pain. To do so, osteopaths focus on different structures of the body such as the spine, bones, muscles, ligaments, intestines, and organs. Osteopaths can help children with dwarfism reduce their risk of ear infections and realign an over/under bite. In the case where the cervical nerves are compressed, they can also reduce some of the symptoms related to digestive problems, colic, constipation, and gastric reflux.

Staying Healthy

Little people are more frequently overweight or obese than people of regular height. The consequences are also more serious: additional weight on bones and joints makes walking and moving more difficult. It can also aggravate osteoarthritis in the spine, knees, and hips. Eating a healthy, balanced, and varied diet is strongly recommended to reduce the risk of complications caused by being overweight. Adults, just as much as children, need to make sure they are getting all the essential nutrients (vitamins and minerals) from their diet and keeping their weight down (see the section The Body under Dwarfism).

Even though little people need to be careful while playing sports, it is equally important they exercise regularly to strengthen their muscles and bones.

Finally, helping little people stay healthy is also related to how they adapt to their environment – an aspect of their health that must not be ignored. Living in a world made for “big people” is a considerable challenge for little people. When required on a daily basis, these physical efforts can have serious consequences on little people: back aches, muscle pain, deformation of the spine, etc. This is why it is so important to help them adjust to their surroundings and for them to use technical aides to reduce their risks. Further detailed information can be found in the section Adaptations.

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© 2011 AQPPT -  Translated by George Bravo and Judy Murphy