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Frequently Asked Questions

What is Arthrogryposis Multiplex Congenita (commonly called AMC)?

Arthrogryposis Multiplex Congenita is a condition that causes many joints to be stiff and crooked at birth. A newborn with Arthrogryposis lacks the normal range of motion in one or more joints. A joint that lacks normal range of motion is called a joint contracture. These joint contractures develop before birth (prenatally) and are evident at birth (congenitally). Arthro means joint, Gryposis means crooked, multiplex means multiple and congenita means existing at birth or present at birth. Arthrogryposis Multiplex Congenita is an umbrella and descriptive diagnosis. This means Arthrogryposis can be caused by an underlying condition or syndrome. This underlying condition is usually the type of Arthrogryposis.

Which joints are affected by AMC?.

Joints that can be affected by AMC include the hands, feet, hips, knees, elbows, shoulders, wrists, fingers, toes, the jaw and the spine. Any and all joints can be affected but it is possible for some joints to be unaffected. No two people are affected exactly the same way.

How does AMC affect the joints?

The range of motion in the joints of the arms and legs is usually limited or fixed. This lack of joint mobility is often accompanied by overgrowth (proliferation) of tissue. This is called Fibrous Ankylosis.

How does AMC develop?

At about the 5th to 6th week of pregnancy, the baby (called an embryo at this point) begins to develop joints. The joint spaces develop by 7 weeks, and the limbs can be seen moving by 8 weeks of pregnancy. This motion of joints is clearly important, as it allows the joints and structures around the joints (skin and ligaments, for example) to develop.  If the joints do not move for any reason when the baby is a fetus (after 8 weeks of pregnancy) the baby will be born with joint contractures.  The lack of joint motion when the baby is a fetus is known a fetal akinesia.  

What causes limitation of joint motion before birth?

Fetal Akinesia (lack of joint motion during prenatal development) can be caused by many things such as problems with the muscles, problems with the nerves going to the muscles, a problem with the signals coming from the spinal cord or a problem with the brain.

The most common type of Arthrogryposis is called Amyoplasia. Amyoplasia is thought to be caused by a single unexplained event that interrupts normal development of muscle. If the muscle doesn’t develop normally the joint cannot move and develop thus leading to fetal akinesia and Arthrogryposis present at birth. This unexplained event is not caused by anything the pregnant mother does or does not do.

Are there different types of AMC?

AMC is a sign of many specific conditions and syndromes. This means that AMC is caused by or can co-exist with other congenital problems that are part of an underlying diagnosis. This underlying diagnosis (a condition or a syndrome) is the type of AMC. There are approximately 400 types of AMC or 400 conditions and syndromes that have congenital joint contractures (Arthrogryposis) as part of it.  There are four basic groups that babies born with AMC can be divided into: Those with only limbs affected, those with limbs and trunk involvement, those with limb, head/face and organ involvement, and those with limb involvement and severe central nervous dysfunction.

What is a Geneticist?

A Geneticist is usually the doctor who determines the type of AMC. A geneticist is a doctor who has special training in genetics. Geneticists are specially trained to look at all aspects of the body and understand what is considered typical. Things they may look at are ear shape, closeness of the eyes, and the length of the limbs.  They will also closely examine the joint contractures. By knowing what is typical in a newborn they can easily see the little abnormalities present in a child born with issues as well as the most apparent issues. These little issues may help determine the type of AMC.

Proper diagnosis of the type of AMC is important because if there are more serious underlying issues this may affect long-term prognosis and treatment.

A genetic counselor may also work with a geneticist. A genetic counselor is a health care professional that holds a masters degree and is trained to help families understand genetic conditions.

It is recommended that you seek out a geneticist who has an interest in Arthrogryposis.


How is the type of AMC determined?

The type of AMC is usually determined by how the contractures present at birth, what joints are affected at birth, if there are issues with other body areas and systems such as the head/ face and the organs.

Other than a physical examination there are several non-invasive and invasive tests that can be done (but are not always necessary) to help determine the type of AMC. These tests can include: An MRI of the brain and the spine to determine if these organs are affected. A muscle Biopsy can be done to look at the fibers of the muscles to determine if they are normal or abnormal. And blood can be taken to look at the chromosomes to determine if there is a problem with them.

If the type of AMC cannot be determined upon first evaluation don’t be discouraged. Some aspects of AMC become more obvious over time. It’s recommended that your child is seen yearly by a geneticist.


What is the long-term outlook for a child born with AMC?


The great majority of people affected with AMC enjoy a normal lifespan. However, it is important to determine if there are problems with the spine, chest wall or brain, and if they are involved close monitoring is necessary to avoid and manage possible life-threatening problems. About 50% of infants that have central nervous system dysfunction along with the joint contractures do not make it through their first year.

Infants born with AMC should have their respiratory status evaluated closely if they encounter an upper respiratory infection, the underdeveloped chest/abdomen muscles and/or spinal deformities can compromise an infant’s ability to manage the congestion involved with an upper respiratory infection.


Does AMC get better?

People with AMC look their worst at birth. AMC is considered non-progressive, so with proper medical treatment, things can improve. The joint contractures that are present will not get worse than they are at the time of birth. There is no way to completely resolve or cure AMC. But with proper treatment, most children make significant improvements in their range of motion and ability to move their limbs which enables them to do activities of daily life, and live relatively normal lives. With therapy, the contractures frequently improve dramatically! Therapeutic interventions that are cornerstone in the treatment of AMC include: stretching and range of motion exercises, physical, occupational, and speech therapy, splinting and serial casting. Surgical intervention may also improve joint mobility and function.

How do you treat AMC?

Treatment for AMC often includes: stretching, range of motion exercises, splinting, serial casting, physical therapy, occupational therapy, and bracing. Clubfoot is a very common deformity of the feet in babies with Arthrogryposis. A method of serial casting called the Ponseti Method is a common approach to correcting the clubfeet. This method can eliminate the need for major clubfoot surgery in infancy. Serial casting is when a joint is stretched and held in that stretch by a cast. Each week the cast is removed and the joint is stretched again and casted. This is repeated weekly until the joint is at its ideal position or a specific amount of range of motion is achieved.

Orthopedic surgery can be done for the joint contractures that are resistant to therapy, stretching and casting. Surgical intervention may include osteotomies (bone cuts) and tendon/ muscle lengthening.

Once gains have been made in joint position and range of motion it is important to use custom-made splints and braces to maintain joint position and motion.

Joint contractures can be difficult to manage and you may, at times, experience regression of gains that have been made with therapies, casting or surgery. Regression is a common occurrence and can happen despite bracing and splinting. It happens because as the child with AMC grows the connective tissues may not be able to lengthen at the same rate as the child’s growth causing joint contractures to recur.


Are there any non-joint related problems?

The caregivers of a child with AMC should be aware that there can be problems associated with the administration of anesthesia during surgical procedures. Anesthesia is the combination of drugs administered to put the child to sleep during the procedure. If the child has facial or spinal issues or a limited jaw opening intubation can be difficult or impossible.

Individuals with AMC may also be more susceptible to the respiratory depressant effects of anesthesia because of their muscle weakness, underdevelopment of the lungs or spinal deformities. It is important to inform the Anesthesiologist of your child’s diagnosis, even if the surgery has nothing to do with AMC. The Anesthesiologist is the doctor who administered the Anesthesia.

Undescended testes can also be an unseen issue in children with AMC.

Children with AMC often have eating difficulties that come from a limited jaw opening or poor muscle strength/ coordination when swallowing. Some children will require a tube placed directly in the stomach to be fed. This is called a G-tube.

A limited jaw opening and the poor muscle strength/ coordination in the throat and face can also cause breathing difficulties. Some children with AMC may require a tracheotomy to breath. A tracheotomy is an opening in the neck that allows breathing without using the nose or mouth.

The overall development of a child with AMC should be followed by a medical professional. Developmental skills such as fine motor skills, gross motor skills, oral and speech development and social development should be followed closely.

So what can and can’t people with AMC do?

Most individuals with AMC have normal intelligence. So the limitations a person with AMC may have are usually only physical. How physically limited a person with AMC is or is not will depend on how they are affected. Some individuals with AMC are very mildly affected and they have very few physical limitations. Others are much more affected and may require assistance from a personal aide to perform daily activities. Some people with AMC walk independently; some may need a wheelchair for mobility. Adults living with AMC are doctors, lawyers, architects, authors, artists, teachers, parents, social workers among other things!


I’m pregnant, and at the ultrasound the doctors told me my baby might have AMC, or something worse. I don’t know what happens next.

If you have a possible prenatal diagnosis of AMC, you have several options at this time. You may want to seek a second opinion of the ultrasound results. You may want to speak to a clinical geneticist. You may want to consider an amniocentesis to rule out chromosomal abnormalities like Trisomy 18. It is important for you to understand all of the options you have and all of the results of tests you have done. If possible bring a friend or family member with you to your appointments, they can provide support and remember the things you may forget during the appointment, (4 ears are always better than 2)

If you are pregnant, and Arthrogryposis is diagnosed through ultrasound findings, Dr. Hall recommends the following to help the baby move (in-utero therapy)


Drink Coffee or Tea 3x a day
Take 10 deep breaths 3x a day
Keep Moving. Exercise 
10 minute fast walks 


It is also recommend, if the baby is healthy enough (lungs are developed), to deliver early (2-3 weeks) so that the contractures will not be as severe

You may also want to discuss with your doctor about delivering by c-section to reduce the risk of fractures. Limbs affected by AMC are more prone to fractures in the newborn period.

I found out my baby has AMC when she was born. How do I take care of her?

Your baby may appear fragile to you, in most cases of AMC they are not. You will still love them and care for them as any other baby.

Dressing or diapering maybe more difficult because of the lack of joint motion. If your baby gets casts or splints before leaving the hospital make sure you have instructions on how to care for the casts and how often the splints need to be worn.

It is usually most beneficial to begin stretching and range of motion exercises immediately, while still in the hospital if possible. If your doctor does not recommend immediate stretching, make sure you understand and agree to the reasons they give you. As always, don’t be afraid to seek a second opinion.

Is assistance available for my child with AMC?

Your child will most likely qualify for early intervention services. Early intervention services include access to physical and occupational therapists and help in keeping your baby progressing in developmental milestones. Most states provide early interventions services free of charge.

Your child may also qualify for financial medical assistance through state level waivers or medicaid. Talk to a hospital social worker, they can direct you to the appropriate programs. If you are out of the hospital, call your local Department of Health, and they should be able to direct you.

Programs vary widely from one state to another. It is to your benefit to educate yourself on the programs and assistance that is available to you and your child in your area.


Can people with AMC have kids?

Woman and men with Arthrogryposis have had children. It is recommended that an adult with AMC whom is planning to have a child seek advice from a medical professional.


We encourage new parents to join our support group forums. There are answers to these questions above and many more from caregivers of children with AMC that have been where a new parent is. http://www.amcsupport.org/forum/


ALL ABOUT UPPER EXTREMITIES  

Common Upper Extremity Deformities
Internal Rotation of the Shoulder
Extension of Flexion Contractures of the Elbow
Flexion Contractures of the Wrists
Thumb in Palm
Extension or Flexion Contractures of Individual Fingers

Courses of Treatment

Therapy

O/T should begin as soon as possible to increase passive range of motion. This can be done through a clinic or at home with your local Early Intervention. Either way you should be taught stretches to do at home with your child. Here are some common stretches to try. Always speak to your O/T or Child’s Doctor before starting any kind of new routine.

Stretches

Thumb- This is hard when your baby is very tiny. Put your thumb in the palm of your child’s hand and push outward on the thumb at the base of the hand. Be very careful not to just push on the thumb itself because you can dislocate the thumb at the joint that connects it to the hand.
Fingers- If in flexion, straighten out each finger and hold. If in extension, gently curl finger. Be very careful and do not go beyond your child’s limits. Do not force anything or you can break their little bones.
Wrists- This is also a very hard stretch on very tiny babies that are very stiff. Place your thumb under the center of you child’s wrist and push upward while bracing the top of their wrist with your middle finger straight across.
Elbows- Be sure you find the elbow joint and are bending in the correct direction. This may sometimes require rotating the arm externally a little bit. Bend the elbow very slowly and gently. As with any other stretch be very aware of how your child is feeling. You know the difference between the annoyed whimper and the cringe of pain. Don’t go any further than your child will tolerate.
Shoulders- This can vary a lot depending on the actual quality and condition of your child’s shoulder joint. I would consult an O/T before doing any kind of shoulder stretches.

Stretches no matter what kind are very important and should be done at least 6 to 8 times a day. A lot of parents do stretches at every diaper change. It makes 1 less thing to remember!

Splinting

Splinting for wrists should be started as early as possible to take advantage of the infant’s  flexibility. In remote areas splinting  is used less often than therapy but  the sustained stretch at night and ¾ of the day  up to about age 2 will gain the best results . Some doctors believe splints can restrict movement and sometimes become more cumbersome than helpful. Though not always effective, splints provide a sustained stretch. They are most often prescribed for over-night wear. Most often they are wrist splints used to slowly stretch the wrists out of flexion. There are many types:

Benik- Soft neoprene splints with a metal bar that can be manipulated to give different amounts of stretch
Custom Made Splints- These are fabricated by an O/T or Orthotist. They are usually made with the same material as AFO’s and can be custom made to your child’s hands. They are secured most often with velcro straps.

Elbow splints are prescribed less often. There are not  any commercially manufactured wrist splints that are small enough for children. Often an O/T or Orthotist can fabricate these using the  thermoplastic splinting material for wrist splints (similar to that used in AFO’s). They then attach velcro and a rubber band that connects to a wrist splint and they provide a sustained stretch while child is relaxed. When the child wants to they can extend their arms it just takes work for them to do so. The other down side to this is that it actually strengthens the muscle that extends the arms, by giving the child the option to extend their arms if they push out. Though this does not usually outweigh the benefits. A static elbow trough-like splint for night and nap use may gain better results than the dynamic one described.


Surgery
Often with children who have little passive elbow flexion, surgery is recommended. Doctors often recommend an elbow release (tricepsplasty) surgery between 8 months and a year but may be delayed to assure that the child is up and walking before changing the power of straight elbows. This is a surgery done by releasing the tight fibrous structures in the elbow that constrict movement. After that if is child still does not develop any active flexion or enough functional passive flexion doctors may recommend a muscle transfer to give elbow flexion (bending). This depends on the quality of the donor muscles as well. Common muscles used are the pecs (pectoralis major)  and a muscle from the back, Latissimus dorsi.  Most doctors will not perform this surgery on children under 4 or 5, because the child needs to participate in the therapy following the surgery to re-train the muscle motion, wear splints to protect the transfer, etc. Every doctor is different in how aggressively they treat upper extremity problems. Some doctors do not believe this surgery is effective at all and may not  offer this as an option to their patients. There are also several hand surgeries that can be performed. For children with a serious flexion contracture in their wrists a small triangular wedge of bone (wedge osteotomy) can be removed to bring the wrist to a more neutral resting position. There are also surgeries for thumb-in-palm, if extremely severe, and various finger surgeries.


ALL ABOUT LOWER EXTREMITIES (coming soon)


EARLY INTERVENTION

Early intervention services help young children with disabilities achieve their goals in cognitive, social/emotional, communicative, adaptive, and physical development. Services may include occupational therapy (OT) to work on upper extremities/fine motor, physical therapy (PT) to work on Lower Extremities/gross motor skills, or speech therapy (ST)  to help a child learn to eat, speak, and improve oral motor skills.  Service Coordination through a local agency (ex: Department of Mental Health, MRDD, and Department of Education) is provided as well. Some states also offer developmental therapy (DT) provided by an Education Specialist or Developmental Therapists who track general developmental progress and work on pre-academic skills.  Most early intervention services take place in the child’s Natural Environment; this could be the child’s home, daycare facility, or babysitter.  Parks and other community facilities are also considered a part of the child’s natural environment.  

Early Intervention services are crucial to the healthy development of children with disabilities.  Through the years, early intervention services have proven to be vital to the healthy development of infants and toddlers with disabilities, minimizing their potential for developmental delay. With early intervention, the child will decrease the range of delay when compared to their peers.  Early intervention helps to reduce the need for special education and related services once the children reach school age.  This lowers the educational cost to local schools.

If a child is determined through a Multi Factored Evaluation* (MFE) to have a developmental delay, the EI program works with the family to develop an Individualized Family Services Plan (IFSP).   *(A MFE assesses a child’s development in all or some of the following areas: fine and gross motor, speech, cognitive abilities, adaptive skills, and social skills).

The IFSP is a written document developed by a team of individuals including the child's parents and representatives from the state's early intervention program (OT, PT, ST, DT, service coordinators etc.). The IFSP includes statements about:

  • The infant/toddler's presenting levels of performance based on objective criteria;

  • The family's resources, priorities and concerns regarding the development of the child;

  • Measurable goals the child is expected to achieve as a result of receiving services; how these goals will be measured, timelines for achievement and methods to modify goals as needed;

  • The specific services needed to meet the individual child and family’s needs clearly stating: frequency, minutes per week/month and delivery method;    

  • The natural environment where services will be provided, or the reasons why services will not be provided in a natural environment;

  • The dates for start of services and the length of services;

  • The service coordinator that will be responsible for implementation of the IFSP and coordination with other agencies and persons; and

  • Steps necessary to support the child’s transition to preschool or other appropriate services when appropriate

Congress created the Early Intervention Program for Infants and Toddlers with Disabilities to help families whose children have special needs.  This program is under the umbrella of IDEA and is Titled:  Part C. If you feel that your child has a developmental delay, ask your pediatrician about your state’s EI services. Some pediatricians want to wait until children are six months old before referral, if this occurs, you may need to initiate the process yourself.   Each state runs their program a little differently, so calling the state coordinator’s office would be a good place to start.    The National Early Childhood Technical Assistance Center offers links to each state’s Part C Coordinators.  Each state’s office should be able to direct you to your local coordinator.  http://www.nectac.org/contact/ptccoord.asp  click on PartC and then select your state. 


TYPES OF THERAPY 

Aqua Therapy

Why AQUA-THERAPY?
Aquatic Rehabilitation is fast becoming a leading therapeutic exercise alternative. Water is an ideal treatment medium for patients with painful joints and weak muscles, allowing for earlier intervention. The buoyancy of water dramatically decreases stress on weight bearing joints, bones and muscles. In addition, water promotes general muscular relaxation and provides consistent resistance throughout a range of motion while also offering support for injured or otherwise weak areas, greater tolerance of activity, and easier gains in range of motion with less pain.

Patient populations benefiting from this form of therapy include those with:
conditions including: multiple sclerosis & arthritis
Joint Disorders/Replacements
Orthopedic Injuries including
Shoulder
Hip
Knee
Ankle
Back
Chronic Pain
Post Surgical Debilitation
Loss of Motion
Muscle Weakness
Fibromyalgia

The benefits of AQUA-THERAPY are:
Decreased pain
Increased mobility
Increased strength
Improved coordination
Increased muscular endurance
Increased relaxation
Increased flexibility
Improved posture
Improved cardiovascular status

The physical properties of water and their effect on the human body help to explain the benefits of aquatic therapy (hydrotherapy.) Water's buoyancy virtually eliminates the effects of gravity - supporting 90 percent of the body's weight for reduced impact and greater flexibility. For example, a 140-pound woman weighs only 14 pounds in water. Water acts as a cushion for the body's weight-bearing joints, reducing stress on muscles, tendons and ligaments. As a result, aquatic workouts are low impact and can greatly reduce the injury and strain common to most land based exercises.

Due to viscosity, drag forces and frontal resistance, water provides a resistance which is proportional to the effort exerted against it. Resistance in water ranges between 4 and 42 times greater than in air, depending on the speed of movement. This makes water a natural and instantly adjustable weight training machine. Unlike most land based exercise, water provides resistance to the movement in all directions which allows all of these directions be used in the strengthening process. Water's resistance can be increased with speed and/or surface area and the resistance is proportional to the effort required to move against it.

The unique properties of water enable your heart to work more efficiently. The hydrostatic pressure of water pushes equally on all body surfaces and helps the heart circulate blood by aiding venous return - blood flow back to the heart. This assistance to the heart accounts for lower blood pressure and heart rates during deep water exercise versus similar exertions on land.

Movement and resistance properties allow patients a great deal of control...the patient is in charge! The greater the speed of movement, the greater the resistance and vice-versa.

http://www.stpta.com/aqua_therapy.htm
http://www.indialife.com/Health/aqua_therapy.htm
http://www.rehaboutlet.com/1004_1.htm


HippoTherapy 

What is Hippotherapy?

Hippotherapy is a treatment that uses the multidimensional movement if the horse; from the Greek word "hippos" which means horse.  Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction.  Historically, the therapeutic benefits of the horse were recognized as early as 460 BC.  The use of the horse as therapy evolved throughout Europe, the United States, and Canada.

 

Hippotherapy uses activities on the horse that are meaningful to the client.  Treatment takes place in a controlled environment where graded sensory input can elicit appropriate adaptive responses from the client.  Specific riding skills are not taught (as in therapeutic riding), but rather a foundation is established to improve neurological function and sensory processing.  This foundation can then be generalized to a wide range of daily activities. 

 

Why the Horse?

The horse's walk provides sensory input movement which is variable, rhythmic, and repetitive.  The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking.  The variability of the horse's gait enables the therapist to grade the degree of sensory input to the client, then use this movement in combination with other clinical treatments to achieve desired results.  Clients respond enthusiastically to this enjoyable learning experience in a natural setting.

 

Physically, hippotherapy can improve balance, posture, mobility, and function,  Hippotherapy may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. 

 

General Indications for Hippotherapy

 

Impairments that may be modified with hippotherapy are:

  • Abnormal tone

  • Impaired balance responses

  • Impaired coordination

  • Impaired communication

  • Impaired sensorimotor function

  • Postural asymmetry

  • Poor postural control

  • Decreased mobility

  • Limbic system function related to arousal, motivation, and attention

Functional limitations relating to the following general areas may be improved with hippotherapy:

  • Gross motor skills such as sitting, standing, walking

  • Speech and language abilities

  • Behavioral and cognitive abilities

Medical Conditions:

 

Clients who may benefit from hippotherapy can have a variety of diagnoses. Some examples of these primary medical conditions, which may manifest some or all of the above problems and may be indications for hippotherapy are listed below.  However, hippotherapy is not for every client.  Each potential client must be evaluated on an individual basis by specially trained health professional. 

  •  Cerebral Palsy

  • Cerebral Vascular Accident (stroke) 

  • Developmental Delay

  • Down Syndrome

  • Functional Spinal Curvature

  • Learning or Language Disabilities

  • Multiple Sclerosis

  • Sensory Integrative Dysfunction

  • Traumatic Brain Injury

  • Autism 

Hippotherapy or Therapeutic Riding: What is the difference and how do I know which one is the most appropriate for my child?

     1). Consider your child's specific needs:

  • Does your child require constant positioning to maintain sitting balance?

  • Does your child need frequent assistance to maintain attention or alertness levels?

  • Is your child under the age= of 5?

  • Does your child have special medical needs that may require the additional knowledge and training from a licensed professional therapist?

  • Does your child have sensory integration dysfunction or frequent behavioral outburst to sensory stimulus?

  • Does your child have specific neuro-motor goals to work on?

  • Would your child benefit most from the horse's movements in private 1:1 sessions?

If you answered "yes" to any of the questions above, then hippotherapy may be the avenue most appropriate for your child at this time. 

     2). Next, look at the availability of programs within an hour drive of your area.  Often there are many riding programs available but few therapists offering hippotherapy.  In addition, therapeutic riding lessons may be offered seasonally and/or programs may have waiting lists.  These are important factors in your final decision.

  • To find a center near you, see the directory at NARHA, the North American Riding for the Handicapped Association

   3).  And finally, consider the costs involved.  Riding lessons typically cost less than professional treatment, however, therapy fees may be covered under your health insurance policy.  You will need to consult the programs and professional in your area for more information related to your particular situation. 

More about the American Hippotherapy Association

Formed in 1993, the American Hippotherapy Association's mission is to promote research, education, and communication among physical and occupational therapists and others using the horse in a treatment approach based on principles of classic hippotherapy.  Registered therapists in hippotherapy are located throughout the United States and Canada.

Sites used to provide this information:

http://americanequestrian.com/hippotherapy.htm

http://americanhippotherapyassociation.org/aha_hpot.htm

http://rightsteptherapy.com/hippo.htm

http://narha.org


Physical Therapy 

Physical therapy also begins very early. A lot of doctors prefer aggressive physical therapy prior to any splinting or surgery. They want to see how much motion can actually be gained without the big ordeal of surgery. Most parents are taught physical therapy to begin immediately with their child. These stretches are very important and are done many times a day in the first few months. Many children are also referred to a physical therapist through EI or their hospital. Physical therapists will also start working on stretches with your child as well as other activities to help them stay on track developmentally. They will try to help you figure out ways that your child can do things, how ever they need to be modified. They will focus on gross motor skills first such as rolling, sitting, getting to a sitting position, crawling, standing, walking, and walking up and down stairs. They will also help your child get use to using any assistive devices your child needs such as crutches, a gait trainer, or walker. Later on in your child’s life they can also assist with the transition to school by helping your child practice skills they will use in school- sitting in a desk, walking down the hallways, playing outside. This is just a very general outline of physical therapy. Each therapist will tailor your child’s course of treatment based on your child’s abilities and what they need to work on as well.


Occupational Therapy
 

Occupation Therapy? Sounds pretty funny for a child, huh? Your child’s occupation is performing activities of daily living at age appropriate levels. These are the things he or she does to “occupy” his or her time. A lot of time upper extremities take the focus in occupational therapy as much time can be focused on self feeding (when age appropriate), dressing skills (also age appropriate), and fine motor skills. Occupational therapists are also trained to work on “stretching” or increasing range of motion (active or passive) in your child’s joints. They may also be the one who will assist you with arm & upper extremity splints. Later in your child’s life your occupational therapist may also help your child with writing and other fine motor skills needed for school and other activities of daily living. Occupational therapists may also assist in ordering adaptive devices for all of these activities such as special feeders or writing equipment. Finally, occupational therapy done early on is definitely believed to help children gain the greatest amount of function possible to perform activities of daily living.


Speech Therapy 

Not all children with Arthrogryposis require speech therapy, though it often begins a very young age in these children. Some children with Arthrogryposis have physical reasons such as a small palate, small esophagus, and generally weak muscles including those used for chewing. Other children with require speech therapy because of oral sensitivity issues such as textures. Yet, others will require speech therapy due to a delay in actual speech. At a young age they can begin to work with children on allowing different textures such as rubber teethers and small vibrations in and around their mouths. At older ages they can work with children and textures of food. They also can work with children on many aspects of speech such as understanding (receptive speech) and vocalizing (expressive speech). They can also help with breath control and some other weakness related issues that affect speech. Speech therapists vary the techniques they use very much and sometimes even the most normal activity can constitute a therapy session. Often times speech therapists will read to a child or sing to a child and try to get them to sing along as well.



Cranialsacral Therapy
Coming Soon!


TYPES OF AMC (coming soon!)

AMYOPLASIA
DISTAL
NEUROGENIC
TrismusPsuedocamptodactyly Syndrome


GENETICS (coming soon!)