Arthrogryposis also known as Athrogryposis multiplex congenital or Amyloplasia: Athrogryposis is a condition where the child’s joints are contracted, or have limitations in movement. Each child with Athrogryposis is different. It can affect only a few joints, or in more serious cases multiple or nearly all joints. These joints may have almost normal movement, or they could also be frozen and unable to move at all. Joints in the arms and legs are most often affected, but can also happen in the jaw or spine. Children with Athrogryposis also typically have weak muscles in the areas where the contractures occur. The contractures in most forms of Athrogryposis usually involve more than one body area, but are typically non-progressive, meaning it won’t get worse over time. Athrogryposis does not directly affect a child’s cognitive development.
Causes: Arthrgryposis occurs when there is limited movement in the womb before a baby is born. This can be caused by the mother having an abnormally-shaped uterus or if there is not enough amniotic fluid. It could also be caused by a malformed central nervous system or abnormal formation of the muscles or joints. As the joints are developing and they are kept immobile for a long period of time, extra tissue develops which permanently locks the joint. While most cases are not genetic, some doctors estimate that about 30% of cases are genetically related.
Possible complications: When Athrogryposis affects the spine, it can cause scoliosis. This form is progressive, meaning it will get worse over time. In some children, there may also be hip dislocation, clubfeet and hands, facial deformities, abnormalities of the spinal cord, respiratory and cardiac disorders, abnormalities of the genital tract and skin disorders.
Treatment:
- Physical Therapy: PT uses stretches and exercises to increase the range of motion and muscle strength while working on gross motor skills, like rolling, sitting, crawling, standing and walking.
- Occupational Therapy: OT can help a child learn to adapt to their limitations in order to care for themselves, as well as improving fine motor skills like pinching, writing, and holding utensils to eat.
- Splints/Casts: PTs and OTs may use splints and casts as part of therapy. These supports can help line up the bones so the child can move better and can also help keep the joints stretched. How and when these are needed are individual to the child.
- Speech Therapy: If the joints of the jaw are involved, the child may need speech therapy, which will help improve the use of the muscles in their face.
- Surgery: In certain cases, surgery can help increase mobility in the child€™s joints. There are several different types of surgery that could be used:
- Surgery to cut into or through the bone to change how the bones line up. They may also change the size or position of the bone.
- Surgery to stretch or release the muscles or tendons that are restricting movement
- Surgery for scoliosis, clubfoot or hip dislocation
Prognosis: Most children with this special need have a normal life span and can lead independent lives. However, some children with more serious cases need lifelong help with daily activities.
Love Without Boundaries[1]
Links for this Special Need:
http://www.adoptspecialneeds.org/special-needs/orthopedic-conditions/#javelin_faq92_84
http://www.rainbowkids.com/special-needs/orthopedic-conditions/arthrogryposis
http://www.nohandsbutours.com/types/orthopedic/
http://www.childrenshospital.org/health-topics/conditions/arthrogryposis
https://groups.yahoo.com/neo/groups/Avenues/info
https://www.youtube.com/watch?v=WoZ2BgPVtA0
https://www.facebook.com/AMCSUPPORT
https://www.facebook.com/groups/133454450005482/
Stories or Blogs from Families who have Parented a Child with Arthrogryposis:
http://peaches-and-pandas.blogspot.com/
http://www.breezyacresblog.com/
http://feet2ourfaith.blogspot.com/
http://www.nohandsbutours.com/category/arthrogryposis/
[1] Love Without Boundaries – http://www.adoptspecialneeds.org/
