Joint Contractures in Children with CP

By Drew Dillard

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Joint contracture is the abnormal and essentially permanent shortening of a muscle resulting in the loss of normal joint movement. It is an especially prevalent condition in patients suffering from spastic cerebral palsy. Learn how to recognize joint contracture in your child and what treatment and therapy options are available to help alleviate the condition.

Definition

Normal muscles work in pairs. When one contracts, the other relaxes. This allows for conventional movement in the desired direction. In children with spastic CP, because brain-to-muscle communication is compromised, muscles have a tendency to work against each other, thus inhibiting effective movement. Over time, the pathological result of this muscular conflict (hypertonic spasticity) is a tightening or shortening of the joint. When muscle fibers are shortened (dystonia), the nearby joint can remain fixed in one position.  This, in part, is what causes the abnormal gait and postures seen in some spastic CP patients.

Hands, wrists, elbows, shoulders hips, feet, the back and even the jaw can be affected. Sometimes it affects only one or two joints, but in more extreme cases it can affect nearly every joint in the body. Untreated, it can lead to extreme pain and frequent bone fractures. Although spastic CP is not thought to be a progressive disorder, as brain damage does not get worse over time, spasticity in muscles can increase over time.

Symptoms and Diagnosis

In children with spastic CP, the process of growth often acts against them, making contractures more problematic. Symptoms may include a loss of motion in one or more extremity, joint inflammation, abnormal movements, disrupted growth (especially longitudinal growth) or an inability to stretch.  Discomfort is another symptom, as pain can result even without voluntary joint movement.

A healthcare professional skilled in joint mobilization will be able to test your child for indications of restricted structures within the joint. They might use a goniometer to measure the motion capabilities of a particular joint or use X-rays to reveal visible decreases in joint space, which could be an indication of a tight, contracted joint.

Prevention

As with anything, early detection is key. The best way to increase and maintain joint elasticity and prevent joint contracture is through joint mobilization and stretching. This can best be done with the guidance of a qualified physical or occupational therapist. Your child’s treatment regimen will depend on the severity of the condition and the child’s prior physical development. The sooner physical therapy is introduced into the child’s routine the better, because once joint contracture has taken place, it cannot be stretched or exercised away.

All physical therapy for cerebral palsy patients should include activities and education aimed at improving flexibility, strength, mobility and function. Cerebral palsy patients suffer from increased muscle tone (in the correct use of the term, muscle tone is an unconscious, low-level muscle contraction while the body is supposedly at rest). Tight muscles are the enemy of CP patients.

A physical therapist can also work with a client on “positioning” (placing the body in a specific position to attain long stretches) or suggest or provide adaptive equipment. A good physical therapist will teach the care-giver how to continue exercising, stretching and positioning at home.

Newer techniques, such as aquatic-based rehabilitation, have achieved impressive results in recent years. In addition to its restorative and detoxifying properties, water provides buoyancy that makes aerobic and anaerobic exercises easier and, in many cases, safer. Some of the documented benefits include improved neuromuscular responses, better muscle synchrony and improved range of motion in joints.

Treatment

If joint contraction has taken place, physical therapy and therapeutic massage will remain major parts of the treatment. Anything that increases mobility, joint elasticity and muscle strength can prevent the contraction from worsening, prevent additional contractions and provide pain relief.

Other treatments that may get introduced include: casts or splints, medication, nerve blocks and electrical stimulation and/or surgery.

• Casts or Splints. Casts or splints can hold a body part in place in an effort to stretch the soft tissues surrounding an affected joint and keep it in a more functional position. They need to be examined and changed regularly to reassess joint position and avoid skin breakdown.
• Medications. Baclofen infusion, a relatively new procedure, involves inserting a pump into the abdomen that distributes baclofen (a muscle relaxant) to muscles, thus temporarily reducing spasticity. Another relatively new treatment involves botox (a muscle paralyzer) injections into overly tightened muscles. In successful cases, the botox was able to weaken the group of muscles and reduce spasticity for periods of up to 4 months.
• Nerve Blocks and Electrical Stimulation. Because the root problem in spasticity is muscles not working in tandem as they should, in some cases, opposing muscles can be alternately blocked (anesthetically numbed) while others are electrically stimulated. This treatment is usually combined with casting.
• Surgery. When a contracture is unresponsive to other treatments, it may become necessary for an orthopedic surgeon to surgically lengthen or release certain tendons or muscles to improve range of motion.

The treatment for spastic cerebral palsy can vary greatly depending on the condition and prior development of your child. Assembling and consulting with a treatment team, including physical therapist, pediatrician, physiatrist, neurologist and orthopedic surgeon will aid in the decision making process. Started early, a well-managed and determined therapy regimen can prevent joint contracture from ever occurring.

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Traditional vs. Special Education for Children with Cerebral Palsy

By John Lehman

Every parent wants their child to have a well-rounded education, and parents of children with cerebral palsy are no different. However, it can be difficult deciding what educational environment will best suit the needs of a child with CP. Some parents find that a special education program, with specially trained instructors, is the best environment for their child. Other children with cerebral palsy benefit more from attending a mainstream school. Of course, every child with cerebral palsy is different, and each option has its advantages and disadvantages.

Mainstream School

This type of school is best suited for children whose cerebral palsy is considered mild, and works best earlier in the child’s education rather than later. Some parents feel that a child with cerebral palsy learns social skills and grows emotionally in a mainstream educational environment. By interacting with non-disabled children, proponents of this option suggest that children with cerebral palsy will learn routine, everyday practices faster. Including children with cerebral palsy in a mainstream school can also be beneficial for non-disabled children, who can learn to develop empathy towards those who are different from them.

Usually, parents and teachers will develop an Individualized Education Program (IEP) to ensure that a child’s needs are attended to. During your child’s schooling years, they may receive physical therapy, speech therapy and special considerations during certain classes. For example, physical educational requirements will likely be different for your child than other children, depending on the severity of their cerebral palsy. These specialized programs can also be beneficial if your child has developed learning disabilities as a result of cerebral palsy.

Special Education

This kind of educational environment is great for children whose cerebral palsy is severe. Unlike mainstream school, a special education system will often have instructors specifically trained to teach a variety of children with disabilities, including those with cerebral palsy. In a special school program, the school’s curriculum is tailored directly to each child’s needs, eliminating the worry that a mainstream school might move too fast for your child.

That is not to say that a child with severe cerebral palsy cannot utilize classes offered by a mainstream program. In fact, many disabled children in a special education program will take art or musical classes at a mainstream school while receiving math, writing and other common classes at their special school program.  Depending on the severity of their condition, some children may receive special education for only specific subjects and use a mainstream school for the majority of their education.

When deciding which educational environment is appropriate for your child, it is important to know that you are not alone. Your child’s teachers, doctors and therapists are all available to assist you and your child as best they can. By working together, you can ensure that your child receives the educational support they need.

Resources:

Education & Society – Cerebral Palsy

Cerebral Palsy World – Education

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Therapy Options for Children with Tactile Sensitivity

By Lee Vander Loop
CP Family Network Editor

Many children with cerebral palsy experience some type of sensory impairment. A study by a Spanish university concluded that children with CP showed reduced sensitivity to non-painful stimuli but enhanced sensitivity to painful stimuli compared to healthy individuals. What’s behind these sensitivities and what can parents and caregivers do to help?

The Anatomy of Our Senses

The portion of the brain that responds to touch and other environmental stimulation is called the somatosensory cortex.  This system is responsible for multiple sensations including light touch, pain, pressure, and temperature. The somatosensory cortex also assesses the size, shape, and texture of objects based on their feel and helps judge body position using sensory input from the joints, muscle and skin.

Many times, cerebral palsy results in damage to this region of the brain, so it’s not surprising that many children with cerebral palsy experience sensory challenges and difficulties. Data suggest that altered somatosensory brain processing in people with cerebral palsy may cause overstimulation of the portion of the brain.  This can result in inappropriate responses to everyday experiences, such as physical affection, play, bathing and other activities.

Does Your Child Have Tactile Sensitivity?

Every child is sensitive from time to time, but frequent negative reactions to touch may indicate a problem. According to the Family Education Network, signs of tactile sensitivity in children include but are not limited to:

• Becoming upset about being dirty
• Difficulty feeling comfortable in clothing
• Anxiety about walking barefoot
• Avoiding touch
• Unusual sensitivity to pain
• Strong dislike of grooming activities such as nail clipping and hair washing

Children with sensitivities are often irritable and don’t adjust well to changes or new situations. They spend so much energy dealing with the many unpleasant perceptions and sensations they face on a daily basis, they don’t have much left to deal with anything else.

Helping Your Child Cope

If you suspect your child may be experiencing sensory processing difficulties, ask your pediatrician or therapist for an evaluation. If left untreated, tactile sensitivity can seriously interfere with a child’s quality of life.

Children suffering from environmental and tactile sensitivity often benefit from occupational therapy. An occupational therapist will work with a child in a sensory-rich environment to help them learn coping strategies that will allow them to behave in a functional manner in daily life.  Occupational therapy for children is designed to be fun but challenging, with the end goal that the child can eat, play with friends, attend school, and participate in other activities that were difficult before therapy.

At Home Activities

There are many activities you can do with your child at home to help them become more comfortable with “unpleasant” sensations. Your child’s occupational therapist will recommend activities appropriate for your child’s unique situation. A few of the most common at-home therapeutic activities are mentioned here.

The Wilbarger Brushing Protocol

This popular therapy relies on the application of firm and rapid pressure to the arms, hands, back, legs and feet with a specific plastic surgical scrub brush. This is followed by gentle joint compressions to the shoulders, elbows, wrists, hips, ankles and sometimes, fingers and feet. A knowledgeable therapist should tell you if this is an appropriate therapy for your child and show you how to conduct it properly.

Deep Pressure/Weighted Products

There are many wearable weighted products on the market designed to provide deep pressure to children suffering from tactile sensitivity. The deep pressure provides important sensory information to the joints and muscles that helps calm sensitive children. Weighted products should be used under the supervision of a pediatrician or therapist.

Messy Play

Many children with tactile sensitivity have an aversion to touching things of a certain texture or “messy” things. Therapists often encourage children to explore these items through play. Messy play can involve play dough, glue, finger paint, sand or other hands-on materials. Ease into messy play slowly. If your child is fearful of the materials, encourage play in a less threatening way. For example, therapists recommend you allow your child to use your hands to start touching the material. Allow him to put objects in and out of the messy materials. As your child becomes more comfortable with the material, slowly encourage him to explore it more. As with any therapy, you should consult your child’s doctor or therapist before beginning messy play at home.

Conclusion

Tactile sensitivity in children with cerebral palsy can have a huge impact on their quality of life. Supervised therapy should be started at an early age to help a child learn to overcome and cope with his negative reactions to daily activities. For more information about tactile sensitivity, talk to your child’s doctor and check out the additional resources listed below.

Additional Resources

Tactile Sensitivity in Children

Tactile Defensiveness… So THAT’S Why He Acts That Way!

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The Benefits of Personal Writing for Children with Cerebral Palsy

By Drew Dillard

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As so many have learned first-hand, writing is one of the greatest tools for healing and personal growth we have. From an early age, children of all abilities need to be shown different ways to process and express their feelings, fears, hopes and triumphs. Personal writing, whether done in a private journal, a public blog or some combination of both, provides a valuable outlet for children with cerebral palsy to grow, express and heal.

The Benefits of Personal Writing

From the moment we sense they might grasp the concept, we begin teaching young children to write because we understand what an important tool it is to functioning as a human being. We know what an important discipline it is to brain development and communication.

Journal writing, the process of recording one’s personal thoughts and feelings, can help your child process difficult feelings, develop coping skills and solve personal issues.  It helps a child purge negative feelings and emotions and gives them a much-needed tool they can use to process the unforeseen circumstances and inevitable confusions we all face.

Getting Started

As with anything, the most effective way to teach “journaling” to a young child is by interactive modeling. At a consistent time each day when you think your child might be most focused, spend a little time reviewing recent activities by talking about them, reviewing photographs and drawing pictures. Write at least some of it down (or type it) and read aloud as you write. Let your child participate and provide feedback about what he or she thought was important about that day. Save the results in a notebook or on a computer page so they begin to grasp the lineage and evolution of events. Encourage them to draw pictures of not only what they did (playing in the park, a visit to the doctor), but also how they felt about it. It may be as simple as a smiley face or a frowny face.

Stimulating the Mind

As they develop the ability to write on their own, keep this practice up. Have them add at least one written line to each daily entry. You may want to prompt them with topics or questions you feel pertinent to the experience. But if they prefer their own tangent, let them go with it. After all, it’s their mind we’re trying to unlock. You may have introduced journaling as a simple documentation of a day’s activities, but with a little direction a child can foster the ability to process thoughts and feelings, work through problems, develop intuition and gain insight. It’s a tool that will benefit them for the rest of their lives.

Once a child can write longer pieces, whether manually, electronically or with the help of adaptive equipment, suggest exercises aimed at broadening perspective such as writing “a letter to your future self,” or “writing dialogue by assuming the role of the other person.”

Blogging

Blogging started in the 1990’s with the advent of internet publishing tools, but really took off in the mid-2000’s with the popularity of MySpace. As of October 2012 there were around 77 million Tumblr and 56.6 million WordPress blogs. Today, Blogger, owned and operated by Google, is the world’s most popular blogging site.

People maintain blogs for many reasons, but mothers blogging about the trials and tribulations of raising children seems particularly prevalent. There’s a good reason for that. Blogging allows parents a space to vent and process feelings; to share and communicate with other parents, finding answers to tough questions and fostering a support network. If the parent of a special needs kid isn’t writing their own blog, chances are they are at least monitoring others to help gain insight and perspective on what is often a difficult journey.

If you are blogging about your special needs kid and you haven’t done so already, let them do the occasional guest spot. You don’t have to share every second of your blogging with them (and probably shouldn’t), but let them understand what it is you’re doing and why it’s important to you. If they seem interested, maybe start a separate co-blog with them.

As they get older they may want to maintain a blog of their own. There are many worthy blogs written by tweens and teens about their personal experiences with cerebral palsy. Recent studies have shown that adolescents blog to maintain friendships and engage in positive discussions of everyday teenage life. For young people whose physical limitations hinder their being out in the world as often as others, blogging is a great way for to them to feel less alone and more connected.

It should go without saying, but before your child is allowed to be on the internet, especially unsupervised, establish a firm set of rules and guidelines. Filters can be installed on computers that will block some, but never all, access to dangerous internet content. Subscribe to an ISP (Internet Service Provider) that offers parental controls, and use them. You can also install software that will filter what your teen can post online, obstructing personal information such as phone numbers.

Regarding content of your child’s blog, obviously there is no litmus test for what should be shared with the world and what should be kept to the confines of one’s personal journal.  As a parent and guardian of a young person, it is your responsibility to be the gatekeeper of what you believe acceptable for your child to “publish.”

Technology

My personal feeling is that pen to paper is the most effective way to connect with your inner self, but this does not always come easy to children with mobility issues who may benefit from electronic alternatives.

It seems that a day doesn’t go by without the announcement of some new piece of must-have digital technology. Children with cerebral palsy have not been left out of this revolution. Children with communication difficulties, whether purely physical or a combination of physical and intellectual, have so many more tools available to them than kids of even 10 years ago.  Specially designed laptops and tablets allow for computer access almost anywhere. From adaptive keyboards to voice-synthesizer software, a child who struggles to communicate clearly, or even speak at all, can be understood by others.

Through journaling, a child with cerebral palsy will discover an all-accepting, nonjudgmental friend and some of the best (and cheapest!) therapy they will ever get.

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Horseback Riding Can Treat Cerebral Palsy?

By John Lehman

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It may surprise you to learn that horseback riding is one of the many treatments available for children with cerebral palsy. The treatment is called hippotherapy and it has been used to treat disabled children and adults alike since the 1960’s. Research has shown that hippotherapy has a positive effect on both motor function and emotional well being in children with cerebral palsy.

What is the Procedure?

Hippotherapy is usually conducted by a team consisting of a physical therapist, a horse handler and, in some cases, a speech/language therapist. The therapy often takes place at a horse farm, though there are also facilities specifically built with hippotherapy in mind. During the procedure, the physical therapist will be monitoring your child’s reactions in terms of balance and control, while the horse trainer will ensure that all safety precautions are taken. It is the horse handler who will also train both you and your child on how to properly ride the horse.

What are the Benefits?

The act of riding a horse forces the rider to match the rhythms of the horse’s movement. In this way, the horse’s natural movement helps the child with cerebral palsy match its rhythm and, therefore, reduce abnormal walking patterns. Studies indicate that the pelvic movement of a horse is similar to that of a human. With consistent riding, children with cerebral palsy could see improved motor function, muscle tone and balance.

Working in conjunction with a horse handler can also help your child improve his or her speech and language skills, as they hear and respond to advice and commands from the handler. Finally, the act of riding a horse can be empowering for patients, improving their self-esteem and emotional well-being.

Is it the Right Choice for My Child?

Of course, hippotherapy is not the best treatment for every child and it may not apply to your child’s specific needs. Your child’s doctor or physical therapist will have the best idea as to whether hippotherapy is the best option, either on its own or as a complimentary therapy. It is also important to note that health insurance typically does not cover this type of therapy.

There are always some risks involved with working with an animal, and hippotherapy is no different. Make sure that your child is outfitted with proper safety equipment such as a helmet or padding around their body. Your child should also carefully follow the instructions of the horse handler to ensure all safety precautions are taken. With adherence to the rules and safety guidelines, it is likely that hippotherapy will be a rewarding experience for both you and your child.

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Resources:

Front Range Hippotherapy

American Hippotherapy Association

How to Deal with Bullying

Editor’s Note: The following is a transcript from Robyn Lambird’s video on bullying and how parents can help their children cope and remain confident in their abilities.

By Robyn Lambird

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My name is Robyn Lambird and today I’m going to be doing a video for the lovely followers and parents of the Cerebral Palsy Family Network. I’ve been asked to do a video tackling the issue of bullying. I know it’s quite a difficult subject to talk about. Obviously, it’s a very serious issue. But I’m going to try my best to explain to you guys my personal experience with bullying and how I dealt with it.

My Experience

I grew up in a not-so-posh area of England up until I was about the age of ten. For me, I think, experiencing bullying and getting bullied was sort of unavoidable because in this certain area of England where I came from, they didn’t like anyone that was different at school. Anyone that was different for whatever reason, whether it was their fashion choice or their mental ability or whatever, they were targeted to be picked on. But I don’t think it’s necessarily important for me to speak about how I got bullied. I think it’s important for me to speak about how I deal with it, because it’s not the bullying that counts. It’s how you deal with it and how you let it affect you as a person.

Obviously, bullying is a terrible thing and nobody should have to experience it in a perfect world. But I do think that some positives can come out of the experience. For instance, now I think I’m a stronger person. I’m more confident within myself and also I can deal with difficult situations and confrontations. I have a higher level of empathy than most kids my age, I think, because I’ve had these experiences.

How Parents Can Help

This blog, as I understand it, is mainly for parents of children with disabilities. I’m going to be talking about my parents and how they’ve really helped me get through it because without my parents, my primary school days would have been a nightmare. I got bullied by my so-called “friends.” The way I mainly got bullied was through isolation. These “friends” of mine would say mean things to me; not necessarily related to my disability because I do think even little children have a sense that it’s wrong to pick on someone because of their ability. They were picking on my because I was different, because I had a disability, but it wasn’t based around that. The main thing they would do was say mean things to me and they would isolate me. They would say, “No, you’re not allowed to sit with me.” Because it was only a small school, a small area of England, I really didn’t have that many friends. And the people I should have been friends with, I wasn’t interested in because every kid chases after being popular. So, I desperately wanted to be in with the cooler kids.

Basically, my parents just told me it’s not my fault. For whatever reason, they’re picking on me, it’s not my fault. It’s their problem. They’re not confident enough in themselves, so they have to put other people down to make themselves feel better. It was just constant reassurance that things would get better and it wasn’t my problem; I was doing the right thing and I could stay strong through it. Bullying is a thing that a lot of people experience. That constant reassurance really helped me.

It Does Get Better

I’ve since moved to Australia. I moved to Australia when I was ten-years old. The kids here are a lot more accepting. They know it’s completely wrong to pick on people because of their ability or to pick on people for any reason. I don’t really think, especially at the school I go to, that there’s that much of an issue with bullying. I certainly haven’t experienced it since I got here. A lot of people have been very accepting. I know a lot of you guys are in America, so I’m not quite sure what the situation there is like. I’ve heard on television and such that you’ve got quite a big issue with bullying. But, like I said, I do think it can make you a stronger person. Obviously, it’s not something I would wish upon everyone.

You’ve got to just keep telling your child that it’s not their fault and it will get better. Go in and speak to the teachers if necessary. I know that my parents have done that and it did help. The teachers would not mention me but bring up to the class how it’s not nice to bully and that kind of thing. Just reassure your child that it’s not their problem and make them feel good about themselves while they’re at home. Explain that kids might not understand why you’re like that because they’ve never experienced it so they don’t know how to cope with it. That’s the best advice I can give really. And, it does get better. I certainly think as you get older, people are more aware. People realize it’s not your fault. You should keep reminding your child that it’s not their fault. They can’t help the way they were born.

I’ve only got quite mild cerebral palsy, so I’m sort of able to stand up for myself, especially now that I’m older. I don’t think that bullying is as bad the more severe the disability gets. I could just be saying that. Obviously, I’ve never experienced it. But in my opinion, I think that if you’ve got a mediocre disability, it tends to be harder because you’re still enough like the other children that they can see your weaknesses.

I hope that was helpful and I look forward to doing more vlogs for you in the future, if it helps. Just remember, you can get through it and it can make you a stronger person. And if you do stand up for yourself, especially when you’re a bit older, just say, “It’s not right. I can’t help it.” Education is important as well. Especially with parents educating other parents so they can educate their children. I hope you enjoyed it. Thanks for giving me a chance to vlog for the Cerebral Palsy Family Network. Cheers!

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Feeding Tubes for Nutrition and Medication

By John Lehman

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Sometimes, depending on the severity of the disorder, children with cerebral palsy have difficulties feeding themselves. In these cases, a feeding tube may be necessary for your child to meet his or her dietary and nutritional requirements. Feeding tubes could also be used to allow your child an easier way to take their medications. Learn more about how feeding tubes can help children with cerebral palsy.

When is a Feeding Tube Necessary?

There are several factors your doctor will consider before recommending the use of a feeding tube, including calorie intake or prolonged lack of weight gain. If calorie intake is not the issue, your child’s medications could be the culprit, as some medications can lead to vitamin deficiencies. In any case, your child’s doctor will evaluate your child’s nutritional needs and determine whether a feeding tube is needed.

What Makes Up the Formula?

Once the use of a feeding tube has been deemed necessary, the next step is determining what sort of food will be used. Your child’s doctor will likely consult with a nutritionist to decide on your child’s diet. There are a variety of options available for you. Doctors or natural food retailers can provide commercially made formulas designed to target specific deficiencies in your child’s diet. You can also make your own formula using a blender and ingredients your child’s doctor has deemed appropriate for your child’s dietary needs.

What is the Procedure?

The process of installing a feeding tube is known as gastrostomy. Depending on how long the tube needs to be installed, the surgeon will either install it through the nose leading into the stomach or directly into the stomach wall. Patients are often put under anesthesia, so the procedure should be painless.

Is Using a Feeding Tube Safe?

Using a feeding tube on children is the subject of some debate. Some medical researchers suggest that their use can lead to complications, including choking, bacterial infections and accidental inhalation of the formula (aspiration). There is also the possibility of organ ruptures, depending on where the device was installed. Keep in mind that it will be necessary to regularly clean the point of entry and ensure your child does not disturb the tube. If the tube is damaged or dislodged, it will need to be surgically replaced.

Despite these risks, research has shown positive results from the use of a feeding tube for children with cerebral palsy. A study was conducted in 1999 to determine the survival rates of children with cerebral palsy who had surgically placed feeding tubes. Of the 61 children, 90% saw improvement in their quality of life. Although it can be hectic to keep up with the schedule of maintenance and nutrition monitoring, the work will pay off by providing your child with a long and healthy life.

Further Reading:

Feeding Tube – WebMD

Feeding Tubes – LiveStrong.com

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Visual Issues in Children with Cerebral Palsy

By John Lehman

Studies have indicated that as many as 75% of children suffering from cerebral palsy have vision impairments of some kind. Sense of sight is an important part of a child’s development, and for children affected by cerebral palsy, detecting vision issues early is critical. Any information you can arm yourself with brings you closer to providing your child with a happy, functional life as he or she grows older. Below, we have identified several vision disorders in children with cerebral palsy and options to treat them.

Types of Vision Disorders

There are many different vision disorders that can result from cerebral palsy, although many share similar forms of corrective treatment.

Cortical Visual Impairment (CVI)

Perhaps the most common condition associated with cerebral palsy. Also called Cerebral Visual Impairment. CVI is categorized as more of a brain dysfunction rather than a direct problem with the eyes. Those suffering from CVI may experience symptoms such as frequent visual fatigue, abnormal responses to light, unusual eye movement, as well asother issues.

Acuity Loss

Acuity loss generally refers to blurred vision. The most common types of acuity loss are nearsightedness and farsightedness, both of which are typically treated by prescribing glasses or contact lenses.

Field Loss

This refers to a group of dysfunctions in the eye’s field of vision. Types of field loss include:

• Central Loss – Visual impairment in the center of the field of vision.
• Hemianopia – Visual impairment on either the upper-lefthand, upper-righthand, lower-lefthand or lower-righthand side of the field of vision.
• Island of vision – Most vision is missing, save for some isolated spots in various places.
• Peripheral loss – The sides of a person’s vision are missing. This is similar to tunnel vision.
• Scotomas – A reversal of “island of vision.” Vision is mostly clear, save for some isolated spots in various places.

Amblyopia

This condition is common amongst children with or without cerebral palsy alike. This condition is also called “lazy eye.” The eyes have difficulty processing depth of field and one eye will have poorer vision than the other.

Detection of Vision Issues

It’s very important to detect visual impairment in your child as early in their development as possible. As a parent, it’s very likely you will notice the signs before your doctor diagnoses a vision disorder at a routine check up. Common signs include frequent rubbing of eyes, difficulty tracking objects, consistent red eyes and other eye problems. If you suspect your child is developing vision issues, consult your child’s doctor or an optometrist as soon as possible.

Treatment Options

Thankfully, most of the vision problems related to cerebral palsy are very treatable and the procedures are not much different than treating common vision issues. Prescriptions for glasses with corrective lenses or contact lenses are common treatments for many of the vision issues children with cerebral palsy will face.

Children with cerebral palsy who have also been diagnosed with CVI usually face a more involved and routine treatment plan. At an earlier age, some doctors recommend vision stimulation therapies to ensure the best possible development of your child’s visual skills. If your child’s visual skills have not advanced very far before they reach age 10, it may be necessary to begin training your child to use non-visual ways of communication, reading and writing. These could include using text-to-speech software or Braille. Your child’s doctor or optometrist should be able to recommend a program based on your child’s specific needs.

Further Reading

Cerebral Visual Impairment – SSC

Vision Problems – WebMD

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Psychotherapy for Children Diagnosed with 
Cerebral Palsy

By Drew Dillard

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The causes of cerebral palsy (CP) are both many and unknown, and no two people diagnosed with CP endure identical situations. However, at one point or another, nearly all people with cerebral palsy will face emotional and psychological challenges regarding the limitations CP has placed upon them. Let’s explore the types of psychotherapy available and how they might benefit your child.

Psychotherapy

Psychotherapy is a general term referring to therapeutic interaction or treatment contracted between a trained professional and a patient in an effort to improve that person’s sense of well-being, coping skills, communication skills and general disposition in the navigation of life’s challenges. It is different from therapeutic disciplines such as physical, speech & language, music & dance, occupational and play therapy, but is an important part of the overall care plan for your CP child.

Behavioral Therapy

Behavioral therapy uses psychological techniques that encourage the mastery of tasks. It is rooted in the belief that responses to emotional challenges and negative behaviors are learned and can therefore ne changed through therapy. Children do not yet possess the cognitive ability to process all that goes on with their thoughts and emotions, much less the ability to clearly communicate them. Psychotherapists are trained in identifying troubling situations, helping that child explore the thoughts, emotions and beliefs surrounding that situation, then helping the them acquire skills that will allow them to respond in a more effective and beneficial manner.

The activities used in behavioral therapy vary greatly depending on the abilities of the child and the problem behavior being addressed. Activities can be designed to teach completing tasks, managing emotions, resolving conflicts, delaying gratification and any number of other basic life skills. Behavioral therapy can help alleviate depression, mood swings, sadness, loss, anger and frustration by allowing previous negative outcomes to be replaced with a more positive perspective.

Counseling or Talk Therapy

As they get older, children with cerebral palsy will likely feel ostracized by peers, isolated from friendships, embarrassed by body image and/or frustrated with treatment goals. This may be a good time to introduce them to “counseling” or “talk therapy,” where they can talk about the things that are bothering them and learn to put them in perspective. It differs from behavioral therapy in that the goals are more along the lines of learning to accept and embrace one’s individuality rather than of raw behavior modification.

Even the most “normal” young person faces daily psychological and emotional challenges. Your hopes for your child at this age won’t differ much from that of any other parent. You want your child to cultivate a healthy attitude toward his or her challenges and to acquire the basic tools that will carry them into adulthood.  Many adolescents and teens see therapists to help process these complicated years. The right therapist can work wonders.

Social and Group Therapy

Individuals with physical or cognitive limitations often face real, and sometimes self-imposed, challenges in building relationships. Difficulties in communicating, fitting in or feeling accepted can lead to delays in social, emotional and even physical development.

Social therapy, introduced in the late 1970’s, helps children learn and embrace strategies that will help them develop friendships as they grow older by participating in group therapeutic settings. This decreases their sense of loneliness, isolation and stress. Social therapy focuses on the health and welfare of the individual as an integral part of a group dynamic. This relational approach helps children integrate into society and understand their role within.

Children with Mild Cerebral Palsy

Mild forms of cerebral palsy are often more difficult to detect and diagnose. Sometimes this leads to missed opportunities to introduce early-intervention corrective treatments, including those of a psychological nature. Undiagnosed abnormalities are often more emotionally troubling than diagnosed ones. If a child’s family and doctors don’t know what’s going on, it can be frustrating and confusing for the child.

A child that only exhibits minor physical impediments, such as issues of balance and coordination, may be completely normal in every other way. This can easily affect the child’s self-esteem. Also, children with minor physical or intellectual limitations are actually more likely to be teased and bullied for it than a child with an overt disability. Likewise, recent studies have shown that children with even minor learning disabilities benefit as much from treating the emotional component of the condition as with remediation of the learning disability itself.

It Takes a Village

It is important that parents and caregivers remain fully involved in the child’s therapies, especially with pre-teens. Caregivers need to understand and practice the positive behavior modifications learned in therapy to be able to recognize attention disorders, identify stressors, prevent meltdowns and minimize triggers all in an effort to reinforce a child’s progress.

Parents, caregivers and children with CP can all benefit from the positive interactions achieved with psychotherapy to compassionately, respectfully and appropriately interact with each other in a stable, secure and happy environment.

Resources

4therapy.com

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Are Home Births Safe?

By Giles Manley, MD, JD
Medical Director for the Cerebral Palsy Family Network

View similar stories.

I was surprised to read recent statistics from the Centers for Disease Control and Prevention that home births are growing in popularity. I would have thought the opposite, given that most hospitals go to great lengths to provide comfortable and nurturing environments for laboring mothers and are the best equipped to deal with emergencies. Also, most insurance companies will not cover a home delivery.

According to the people who examine such trends, the primary reason seems to be women – mostly the older, more affluent, and those who already have had children – are looking for a more “intimate experience.” They may also have concerns that hospital-based births tend to be accompanied by more interventions, such as C-sections.

As a board-certified practicing obstetrician for more than 20 years, I can only speak to what I know. In my opinion, I would not recommend home births.

Yes, 90-95% of home births are going to be fine, assuming the mother is healthy with no known health risks, has experienced uncomplicated pregnancy and delivery before, and that a certified midwife is in attendance. But why would a mother take even a five percent chance that, should something go wrong, she wouldn’t be where she and her baby could get the best care? When a baby inside the womb gets into trouble, even minutes can make a critical difference. The same holds true for women with bleeding complications. Will the baby experience permanent brain injury, or will mom bleed out, while being transported to a nearby hospital?

Recommendations for a Safer Home Birth

Still, sometimes I still get asked about home births and what I would recommend to make them as safe as possible. Here’s what I say:

• First, consult with an obstetrician and be checked for any pregnancy health risks, such as smoking, diabetes, heart disease, RH factor, previous C-section, or if you are over 35 and this is your first child.
• Make sure your midwife is certified.
• Make sure your midwife has a back-up physician at the nearest hospital.
• Know exactly which ambulance company serves the hospital nearest you.
• Make sure the midwife has resuscitation equipment, such as an AMBU bag, along with oxygen, in case it’s needed.
• A better option than a home delivery would be a birthing center. These are usually affiliated with a hospital and have on-site ambulance service.

A number of inquiries involving botched home births have come across my desk as a birth injury attorney. Unfortunately, since the midwives involved in these home births did not carry malpractice insurance, we had no way of helping these families recover any money to help care for their injured children. It’s just one more consideration when thinking about a home birth. Although the chance of something going wrong with an otherwise healthy patient and pregnancy is slim, an unforeseen complication could prove disastrous. Why take the chance?

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