Summer Heat Safety Tips

By Lee Vander Loop
CP Family Network Editor

Summer is nearly here! Kids are anxiously awaiting the end of the school year and families are beginning to plan summer outings, vacations and outdoor adventures. It’s a time of sports, outdoor play, family gatherings, and warmer weather.

With the additional sun exposure, we as parents have the responsibility of keeping our kids safe during the long, hot days of summer. We’ll highlight some of the risks the summer heat poses and what you can do to protect your children and family for an enjoyable, healthy and safe summer.

Protecting Kids from Sun Exposure

Many of us are all too familiar with the pain of sunburns. For parents of children with special needs, extra vigilance is needed. A non-verbal child cannot communicate to you when they are thirsty or feeling the effects of excessive sun exposure. Kids don’t have to be at the pool, beach, or on vacation to get too much sun. Their skin needs protection from the sun’s harmful ultraviolet (UV) rays whenever they’re outdoors. The American Academy of Dermatology estimates that kids get 80 percent of total sun damage by the age of 18. Sunburn also affects your body’s ability to cool itself and causes a loss of body fluids. Follow these tips to keep your family safe this summer.

Timing is Everything

• Seek shade. UV rays are strongest and most harmful during midday, so it’s best to avoid outdoor activities during this time. If this is not possible, seek shade under a tree, an umbrella, or a pop-up tent. Remember, it’s important to take precautions before a sunburn occurs, not once the damage is done.

• Cool and cloudy? Children still need protection. UV rays, not the temperature, do the damage. Clouds do not block UV rays, they filter them—and sometimes only slightly. Make sure to take proper precautions even when the sun isn’t shining.

Cover Up

• Protective clothing. Clothing that covers your child’s skin helps protect against UV rays. A T-shirt, long shorts, or a beach cover-up are good choices—but it’s wise to double up on protection by applying sunscreen or keeping your child in the shade when possible.

• Get a hat. Hats that shade the face, scalp, ears, and neck offer the best protection. Baseball caps, although popular among kids, don’t protect their ears and neck. If your child chooses a cap, be sure to protect exposed areas with sunscreen.
• Wear sunglasses. Sunglasses protect your child’s eyes from UV rays, which can lead to cataracts later in life. Look for sunglasses that wrap around and block as close to 100% of both UVA and UVB rays as possible.

Sunscreen

• Apply early and often. The CDC recommends the use of sunscreen with at least SPF 15 and UVA and UVB protection every time your child goes outside. For the best protection, apply sunscreen generously 30 minutes before going outdoors. Since no sunscreen is truly waterproof, reapply again after they’ve come from the pool or other water sports activities. Don’t forget to protect ears, noses, lips, and the tops of feet. Keep in mind, sunscreen is not meant to allow your kids to spend more time in the sun than normal, it’s meant to reduce damage from UV radiation.  It doesn’t eliminate the threat.

• Protecting infants. Although babies younger than 6 months should be kept out of direct and indirect sunlight because of their increased risk of heat stroke, The American Academy of Pediatrics now advises that sunscreen use on babies less than 6 months old is not harmful on small areas of a baby’s skin, such as the face and back of the hands. Your baby’s best defense against sunburn is avoiding the sun and staying in the shade.

Precautions for Special Needs Children

• Medication precautions. Children on a variety of prescription medications are especially vulnerable to heat related illness.  Check your child’s prescriptions for warnings in relation to sun exposure. The risk for heat-related illness and death may increase among children using certain medications such as drugs: (1) which affect psychic function or behavior; (2) medications for movement disorders or seizures, because some medications can inhibit perspiration; and (3) diuretic medications or “water pills” that affect fluid balance in the body.

• Wheelchair users. For children who are non-ambulatory and stroller or wheelchair dependent, extra caution is needed. Seek shade for your wheelchair dependent child and take all other necessary precautions listed here.  Wheelchairs make heat even more unbearable. The cushions heat up and the plastic covers may cause excessive sweating, which can lead to dehydration and skin breakdown. Also be mindful that the metal portions of a wheelchair or stroller can become extremely hot in a very short period of time when exposed to direct sun. Protect your child from contact burns by covering any accessible arm rests and metal frame portions of the chair that your child may come into contact with. Wheelchair umbrellas are one way to provide added protection.
• Be prepared. If you plan on an extended outing, be sure to pack a cooler of ice and cold drinks. If you have a child who is tube fed and will need to be fed during the course of your outing, packing formula in a cooler with ice is a safe way to prevent spoilage. You’ll also want to keep small bottles of water in a cool place for any needed tube flushes, before or after feeds.

Conclusion

Avoiding sunburn and heat related illness is relatively straightforward if you follow these basic precautions. Being prepared, paying attention to weather conditions, and monitoring your child’s reactions to the heat and sun can help ensure your special needs child can enjoy outdoor activities this summer.

Additional Information

CDC Protecting your Child in the Sun

American Academy of Pediatrics, Baby Sunburn Protection

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CP Daughter Inspires Mom’s Passion for Photography

By Sara Sprague

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Being very career focused in my 20′s, I obtained my RN rather young. I went on to spend more than a decade dedicating my life to caring for and healing critically ill children in the Pediatric Intensive Care Unit, all the while dreaming of the day I might have my own child. After marrying my Prince Charming in 2008, it wasn’t long before we were expecting a precious baby girl.

Perfect Pregnancy Ends in a Heartbreaking Birth

In June of 2009, I had succeeded at a very healthy full-term pregnancy. Thirty-two hours after I was admitted to the hospital for labor, I knew something didn’t feel right. With each passing contraction I could feel that I could not advance the fetal head. After pushing for an additional one and a half hours, my caretakers realized that our daughter was not in a position for birth. She presented ear-first instead of crown of head-first. Much more concerning than her position was the discovery that her umbilical cord was completely prolapsed, cutting off her circulation and oxygen supply. I watched helplessly as her heart rate fell from 60 to 30 to 20 to reading nothing at all. I was whisked to the operating room with the OB riding in the bed to hold the fetal head off of the umbilical cord. Just before I was put under general anesthesia, I remember thinking I needed to prep myself for the possibility of waking to the news of a stillborn.

When I woke and was taken off the respirator, I was told that “Lyric,” named for her father’s musicianship, had survived.

When I was well enough to see her for the first time, I was still in a fog, but I noted abnormal newborn posturing right away. After having her evaluated by a Pediatric Neurologist, my fears were confirmed and Lyric was diagnosed with mild cerebral palsy and double left hemiparesis. In her infancy, she was not able to use her left arm/hand much at all and kept it tucked tight to her body.

Exhausting Schedule of Treatments and Therapies

All of Lyric’s developmental milestones were delayed and as she came into her toddler years, she required extremity braces, physical, occupational, and speech therapies five to six days a week.

This schedule grew exhausting fast and I felt like we had little life outside of the intensive therapies and focusing on what Lyric couldn’t do or should be doing at her age.

I decided we needed an OUTLET. An outlet that allowed me time with Lyric, that could perhaps CELEBRATE Lyric, and help me to see some positives instead of living in the perpetual state of what she “could not do.”
 

Channeling My Creative Energy through Photography

I had always dabbled in photography and found great joy in dolling Lyric up, experimenting with lenses, lighting, adding silly props and setting scenes. I took a few photos and submitted customer appreciation photos to the various children’s clothing designers from whom I had purchased. Before I knew it, I was getting requests from more and more designers for photographs.

By the time Lyric was 12 months old, I figured it was time to get some photography education under me and some professional equipment along the way. I took various classes/mentoring, began networking with area photographers, and taught myself Photo Shop – THE MOST UN-USER FRIENDLY program on Earth! As Lyric grew, so did the demand for my photography. By the time she was 18 months old, I launched a Facebook fan page to reach a larger audience. Soon after, I was requested by area mommies to photograph their little sweet peas and as it turns out, I had a bit of a knack for I, a talent I NEVER would have realized if it weren’t for the birth of my special needs darling.

Appreciating the Irony of Life’s Little Surprises

I realize my multitude of blessings now… to be a mother to a child who has come so far in her short life to become what you see today…to be married to the most incredible father and partner I could have chosen in this journey, to be a photographer on a full time basis and an RN only part time, and to be networked with literally hundreds of like-mamas who have taught themselves to sew, build websites, and pursue numerous other entrepreneurial endeavors to help them stay at home and available for their special needs children while still supporting their families.

It’s so very ironic how life unfolds with little surprises along the way. Lyric is now 3 years old and is more inspiring and amazing to me by the day. As her parent, the fear of the uncertain future can be overwhelming but I’ve had gentle hands to guide me along this path and take one day at a time… and a photo to cherish every day.

About the Author

Sara Sprague is a Registered Nurse of 10 years dedicated to Pediatric Intensive Care & Neonatal Intensive Care. After the birth of her own special needs baby, she decided to pursue her passion for photography on a professional level so that she could be more available at home. She now runs SAS Photography, a boutique baby photography company.

Cerebral Palsy Diagnosis

Many parents of children diagnosed with cerebral palsy are given little explanation of the cause, severity or future implications of the disorder. Surprisingly, many children may not receive a cerebral palsy diagnosis until they are school age, even though there may have been circumstances at birth that indicated risk of cerebral palsy. Many pediatricians take a “wait and see” attitude when parents present issues of delayed development.

Most cerebral palsy conditions are caused by lesions on the brain. These lesions may be caused by:

• Injuries that occurred during pregnancy or birth (congenital cerebral palsy)
• Injuries sustained in the months or years following birth (acquired cerebral palsy)

While symptoms range from mild to severe, the condition does not get worse as your child gets older. Depending on the level of severity however, a child may be at risk for complications related to cerebral palsy such as developmental delays, failure to thrive, joint contractures, scoliosis or seizures.

Cerebral Palsy Diagnosis

Spastic Cerebral Palsy

Known as the most common form of cerebral palsy, spastic cerebral palsy causes tightness in the muscles. Patients have stiff and jerky movements and will often have difficulty letting go of something in their hand. Many children with spastic cerebral palsy rely on medications, therapies or surgical interventions to manage their spasticity and prevent secondary complications.

Athetoid Cerebral Palsy

Athetoid cerebral palsy (fluctuating tone) is a neurological disorder resulting in a variety of movement disorders that result in involuntary and uncontrolled movements. A child may be shaky and unsteady and may make frequent, abrupt movements. Due to the mixed muscle tone involved in athetoid cerebral palsy, a child may experience difficulty with fine motor skills and maintaining torso control.

Ataxic Cerebral Palsy

A less common form of cerebral palsy is ataxic cerebral palsy. Ataxic CP disturbs a child’s sense of balance and depth perception, resulting in jerky, uncoordinated movements. A child with ataxic cerebral palsy may exhibit mixed tone and experience challenges with controlled movements.

Healthcare Concerns

Depending on the level of severity, cerebral palsy may result in a variety of healthcare concerns including inadequate oral motor skills and compromised ability to consume adequate fluids and nutrients. Untreated, severe oral motor dysfunction can result in dehydration and failure to thrive. Other healthcare concerns may include childhood osteoporosis, movement disorders, gastro- esophageal reflux disease (GERD), contractures of the extremities, and scoliosis.

Neuromuscular Issues

These affect the nerves that control voluntary muscles. “Neuro” indicates the origin of the disorder is at a neurological (brain) level. Left untreated, neuromuscular issues can severely impact a child’s quality of life and future development.

Seizures

Not all children with cerebral palsy suffer from seizures, just as not all children who experience seizures have cerebral palsy. Seizures result from abnormal and excessive discharges of nerve impulses originating from certain brain cells. Some of this excessive activity reaches the skeletal muscle fibers and triggers the violent contractions typical of many seizures. Seizures differ depending on the portion of the brain involved. Seizures that occur in only one hemisphere or part of the brain are known as “focal seizures.” Seizures that occur in both hemispheres are referred to as “generalized seizures.”

Range of Motion Issues

Range of motion (ROM) is the measurement used to describe the degree of flexion (how far it can bend) and extension (how far it can stretch or extend) in a joint. ROM is usually measured by degrees. Many children, especially those with spastic cerebral palsy, experience limited range of motion. Children with hemiplegia may experience limited range of motion involving the extremities on one side of their body. Children with quadrapalegia may experience range of motion issues with all extremities including the trunk, putting them at risk for spinal scoliosis.

Early Intervention

Receiving a cerebral palsy diagnosis allows parents to move forward and begin to pursue treatment and therapy options for their child. Early intervention is key to providing children with cerebral palsy the highest quality of life possible. For information about managing your child’s cerebral palsy, visit our Cerebral Palsy Treatments and Therapies page.

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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My Child With Cerebral Palsy Can’t Sleep

By Lee Vander Loop

I saw a cartoon in the newspaper the other day that featured a conversation between a sleep-deprived mom and dad arguing over who should get up for the 3 a.m. feeding. It was a reminder that sleeplessness is an inevitable part of parenting a newborn that most, at least when they’re past it, can take lightly, since it usually lasts a few months.
But what if it doesn’t? What if after six or seven months a child doesn’t show signs of ever being able to sleep more than a few hours? What does a parent do then?  Parents with children who suffer from a neurological birth injury soon learn how that injury has impacted their child’s ability to sleep. For many, their child’s sleeplessness may be one of the first issues they discuss with the pediatrician.

Underlying Medical Issues

First and foremost, determine whether your child’s sleeplessness is being caused by other factors such as sleep apnea, reflux or seizures. Discuss these possibilities with your child’s pediatrician. Many children may experience sleeplessness as a result of environmental, auditory or dietary factors in their lives.
Your child should be seen for evaluation, testing and treatment by a child neurologist, or neurodevelopmental specialist and possibly a behavioral psychologist experienced in sleep disorders. Many large teaching hospitals and specialty hospitals have Sleep Disorder Clinics with trained medical and psychological staff that can assess and help in the treatment and management of a child’s sleep disorder. Some of the more common tests are:

• Polysomnograms (PSG) –  The PSG monitors many body functions including brain (EEG), eye movements (EOG), muscle activity or skeletal muscle activation (EMG),  heart rhythm (ECG), breathing functions and peripheral pulse oximetry. It is usually conducted in a sleep lab at night, although it is possible to also do it in the home setting. It involves attaching electrodes to the patient and monitoring for several hours over several days.

• Multiple Sleep Latency Test (MSLT) -  This is a daytime study usually conducted the day after a formal night time sleep study has been conducted. The study measures how long it takes for a child to enter a sleep state after he or she begins napping. The test usually is conducted in a sleep lab.

• Actigraphy –  An “actigraph” is a small, wristwatch-sized device that records movement and is often attached to the wrist or ankle. The actigraph records an “actigraphy” report, which is usually taken over a period of weeks to establish the pattern of sleep and wakefulness. Often used in conjunction with a sleep diary, actigraphy in children can provide additional information about their sleep.

• Overnight EEG with video monitoring – This test is used to determine if a child may be suffering from epileptic or other seizures at night. Because children with disabilities often have difficulty adapting to new environments, strangers and difficulty with touching, attaching electrodes is challenging. A 2010 study reported that children with disabilities can be helped through a sleep study with the aide of conditioning techniques .

Environmental Factors

After any underlying medical problem have been diagnosed and treated, parents can turn to other healthy sleep techniques. These include:

• Establishing a “bedtime routine” such as a warm bath, rocking, calming music, or a story.

• Ensuring quiet. Many children with neurological disorders and sleep disorders are light sleepers and awaken at the slightest stimulation.

• For infants, swaddling, or tightly wrapping in a blanket, may be calming.

• Not intervening too quickly if the child wakes up crying. Children may be able to learn self-soothing techniques if allowed to do so. If your child is simply cooing or talking and entertaining themselves, don’t interfere.

• Use a baby monitor so you know what’s happening but you don’t stimulate your baby with your presence.

Medications

Medications can also influence sleep, so be sure to explore this with your physician. Pharmacists are also wonderful resources for information about drug side effects. If your doctor prescribes a medication, be sure to ask about side effects and alternatives should one not work. Also be aware that some medicines will only work for a short period of time before your child develops a tolerance for it and so dosages may change. Other medications may carry a risk of dependence.
In my research I’ve read of parents using a variety of medications, some with more success than others. An example of some of the medication options mentioned are:

• Klonopin – Klonopin is the trade name for clonazepam, which works by calming brain waves and nerves. However, some studies have discouraged use of this class of medications in those with traumatic brain injury. See  PubMed Abstract of 2010 study by the Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Chicago Illinois

• Clonodine –  PubMed Abstract of a 2005 study conducted in the UK reports improvements in the sleep patterns of children with neurological and developmental disorders following the use of Clonidine. While many studies have been conducted in relation to Clonodine for sleep disorders in children with ADHD, few can be found dealing with children with moderate to severe neurological and developmental disabilities.

• Melatonin: According to MedlinePlus, melatonin is a hormone produced by the pineal gland in the brain that regulates our sleep-wake cycle. Clinical data suggests that melatonin is a commonly prescribed drug for disturbed sleep in children with neurodevelopmental disabilities. Melatonin used as medicine is usually made synthetically in a laboratory. It is most commonly available in pill form, but melatonin is also available in forms that can be placed in the cheek or under the tongue. This allows the melatonin to be absorbed directly into the body. People use melatonin to adjust the body’s internal clock. It is used for jet lag, for adjusting sleep-wake cycles in people whose daily work schedule changes (shift-work disorder), and for helping blind people establish a day and night cycle. The Natural Medicines Comprehensive Database that rates effectiveness based on scientific evidence rated melatonin as likely effective for “sleeping problems in children with autism and mental retardation.” Also, see  “Melatonin for Treatment of Sleep Disorders at the Department of Health & Human Services, Agency for Healthcare Research and Quality.

• Acupuncture – Some parents have tried alternative medications such as acupuncture which seemed to provide immediate, short term influence but nothing long lasting that had any impact on chronic night time sleeplessness.

More About Sleep

Sleep disorders are a common problem in children with cerebral palsy as well as Alzheimer’s disease, stroke, cancer, and head injury. These sleeping problems may arise from changes in the brain regions and neurotransmitters that control sleep, or from the medications used to control symptoms of other disorders.
Many parts of the brain play an important role in the process of sleep. Damage to cerebral pathways, the mid brain or cerebral cortex can all impact a child’s ability to sleep. My own daughter with severe global brain injury has never established a routine sleep-wake pattern.
A deeper understanding of sleep disorders in general can be found in Brain Basics: Understanding Sleep by the National Institute of Neurological Disorders and Stroke.
According to a study conducted in Ireland, among children with cerebral palsy, sleep disorders are more prevalent in children with spastic quadriplegia, those with dyskinetic CP, and those with severe visual impairment. Both medical and environmental factors seem to contribute to the increased frequency of chronic sleep disorders in children with CP, according to the study.

Why Sleep is Important

We all know sleep is important. People become quickly disoriented for lack of sleep. We simply don’t function without sleep. Why? Here’s what the experts believe:

• Sleep gives neurons used while we are awake a chance to shut down and repair themselves. Without sleep, neurons may become so depleted in energy or so polluted with byproducts of normal cellular activity that they begin to malfunction.

• Sleep allows the brain a chance to exercise important neuronal connections that might otherwise deteriorate from lack of activity.

• Deep sleep coincides with the release of growth hormone in children and young adults. Many of the body’s cells also show increased production and reduced breakdown of proteins during deep sleep. Since proteins are the building blocks needed for cell growth and for repair of damage from factors like stress and ultraviolet rays, deep sleep may truly be “beauty sleep.”

• Activity in parts of the brain that control emotions, decision-making and social interactions is drastically reduced during deep sleep, suggesting that this type of sleep may help people maintain peak emotional and social functioning while they are awake.

• A study involving rats showed that certain nerve-signaling patterns that the rats generated during the day were repeated during deep sleep. This pattern repetition may help encode memories and improve learning.

The Importance of REM Sleep

Only after 1953, when researchers first described REM in sleeping infants did scientists begin to carefully study sleep and dreaming. In their studies scientist discovered that we typically spend more than two hours each night dreaming, and soon realized that the strange, illogical experiences we call dreams almost always occur during REM sleep. While most mammals and birds show signs of REM sleep, reptiles and other cold-blooded animals do not.
REM sleep begins with signals from an area at the base of the brain called the pons (illustration). These signals travel to a brain region called the thalamus, which relays them to the cerebral cortex – the outer layer of the brain that is responsible for learning, thinking, and organizing information. The pons also sends signals that shut off neurons in the spinal cord, causing temporary paralysis of the limb muscles. If something interferes with this paralysis, people will begin to physically “act out” their dreams – a rare, dangerous problem called REM sleep behavior disorder.

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

Toilet Training Children with Cerebral Palsy

By Lee Vanderloop

Perhaps nothing is more important to a child as he or she grows older as the ability to control their bowels and bladder. With successful “potty training” comes freedom to move into the wider world, such as school or day care. It is a major developmental milestone for any child. For a child with cerebral palsy, it can be monumental.

Children with cerebral palsy frequently suffer from  urinary incontinence and constipation, which can result in bowel leakage. Both of these functions are controlled by muscles, so the degree of muscle tone or strength in a child with cerebral palsy will in large part dictate how able they are to control their toilet functions.

Toilet training is expected to be obtained by the chronological age of five in non-disabled children, and by the cognitive age of five for a child with a developmental disability. Children with moderate to no level of learning disability or mobility issue were able to achieve a level of continence at age three, according to a 2006 hospital study. The study recommended that regular toilet training for these children should start around then.

In children with more severe developmental and mobility challenges, the study determined that the probability of continence is extremely diminished after the age of eight. For these children, incontinence products and  external collection devices are available. Also, some studies have shown that intermittent catheterization combined with medication may also be a good option for some older children.

Types of Incontinence

• Stress Incontinence – Occurs during activities such as coughing, sneezing, or exercise.
• Urge incontinence – Involves strong, sudden urges to urinate flowed by bladder contraction and involuntary loss of urine.
• Fecal/Bowel incontinence – The inability to control the passage of stool.
• Overflow incontinence – Occurs when the bladder cannot empty completely.
• Mixed incontinence – Involves multiple types of incontinence.

Bladder Function

The inability to control the release of urine is called bladder incontinence, or neurogenic bladder. The bladder and sphincter work in harmony to control urine storage and release. The sphincter is a group of circular muscles around the opening of the bladder and must be able to squeeze to prevent urine leakage. The bladder wall muscle (detrusor) must stay relaxed so the bladder can expand. In many children with cerebral palsy this group of muscles may be weak.

Incontinence can take the form of bed-wetting, uncontrolled urination during physical activities, or slow leaking of urine throughout the day.

Evaluation

The first step is to get a full evaluation from a urologist, which is a doctor who specializes in urinary issues. The doctor will want details about your child’s incontinence, so it’s a good idea to keep a three-day diary of out-puts, including amount, time of day, stressors, activities, meals, foods, liquid intake and anything else you think might be helpful.

Common Tests for Bladder Incontinence Include:

• Uroflowmetry to look at lower urinary tract functions.
• EMG to look at the pelvic floor.
• Cystometry – a moderately invasive test and dependent on a cooperative child, cystometry in children evaluates the bladder muscle called the detrusor that contracts to squeeze out urine and then relaxes.
• Urine test – the doctor will also test the urine for signs of a urinary tract infection, which can also cause bladder incontinence. Repeated infections can lead to a conditionvesicoureteral reflux, where urine travels backward into the kidneys. Another source of infection occurs when the bladder doesn’t empty completely, leaving a small amount of  urine in the bladder that can collect bacteria. A 1993 London study suggests that children with cerebral palsy have increased incident of lower urinary tract symptoms.

Treatments:

Medical treatments for incontinence may include special exercises, biofeedback, prescription drugs, surgery, or surgically implanted devices to replace or aid muscles.

Basic to all these other strategies, however, is proper toilet posture. The child needs to be able to sit securely on the toilet or the potty chair. Buttock support, foot support and comfortable hip abduction are necessary to enable a sitting posture that keeps the child relaxed and prevents activation of abdominal muscles and the simultaneous co-activation of pelvic floor muscles. A therapist trained in muscle re-education can help a child learn this posture and other techniques necessary for relaxed voiding to completion.

After physical issues such as anatomical abnormalities or pelvic floor dysfunction have been ruled out, most children can be successfully treated with urotherapy and muscle training.

Standard Urotherapy

Urotherapy in this context is not to be confused with the “urotherapy” that claims to treat disorders by drinking urine. Standard, or conventional, urotherapy for children with voiding problems originated in Scandinavia in the 1980s. It describes a non-surgical and non-drug approach to treating lower urinary tract dysfunction and is defined as a bladder re-habilitation program with the goal of correcting filling and voiding problems. It usually involves education of the child and family, routine hydration, and regular voiding regimens and bowel programs. It may also include pelvic floor muscle awareness activities and biofeedback training

It’s recommended that initial steps in urotherapy should always involve education of the child and family regarding bladder and bowel dysfunction, timed voiding, adequate fluid intake, aggressive management of constipation and hygiene issues (changing of wet clothing, containment products, skin care and correct wiping technique after toileting), as well as treatment expectations and a timeline.

Toilet Training Methods

The Diagnostic Center, Southern California has developed an approach toward toilet training a child with developmental delays that it calls “habit training.” In this approach, a mental picture, signal or visual cue of a toilet becomes linked in the child’s mind with a need to void. The Center has a six-page hand-out that takes you through the steps and provides other good suggestions.

Another study, this one published in 2010 in the Journal of Urology concluded that wearing a programmable wrist watch was successful at helping many children manage daytime bladder control problems. The study also suggested that timed bathroom trips are a crucial part of urotherapy for daytime incontinence.

Drug Treatments

Drugs used to treat bladder or bowel incontinence target the muscles used in these functions. All have side effects. As of 2009, there were no approved drug therapies known to the International Children’s Continence Society. The ICCS recommends that alpha blockers and Botox may be considered alternatives only when other treatments, such as behavioral therapy, have failed, and then only with appropriate parental counseling.

Surgical Options

There are a number of surgical interventions that treat incontinence caused by an underlying physical abnormality or disorder. The Mayo Clinic offers a comprehensive listing and descriptions of them.

Of note is a study conducted by the Women’s Specialty Center of Central Maine Medical Center that showed a procedure known as sacral neuromodulation which has the potential as a valuable tool in treating incontinence associated with CP.

Bowel Function

The ability of a child to learn to control bowel function, like urinary function, depends on degree of muscle control and mental awareness of feelings to void. The age at which this happens will depend on the developmental age of the child and muscle tone.

Bowel function is controlled by muscles of the anus and sphincter. An inability to squeeze the sphincter tightly enough can lead to leakage. Chronic constipation,  in which stool blocks the rectal passageway, can lead to damage to the muscle walls, worsening the ability to close tightly. So again, a child with muscle tone issues will likely have some bowel control issues.

The first step, of course, is a full medical evaluation by a specialist in bowel issues. These specialists are called gastroenterologists. They will rule out physical anomalies such as blockages, and make treatment decisions about surgeries and medications that might help.

Constipation affects many children with cerebral palsy. Laxatives are not recommended. Instead, dietary changes and  making sure your child gets plenty of liquid is the first approach. A dietitian or your pediatrician can recommend other approaches to constipation.

Bowel retraining, consisting of exercises and biofeedback, can help a child strengthen those muscles and to become aware of the urge to defecate.

In some cases, the use of special fecal collection devices to contain the stool and protect skin from breakdown might be recommended. These devices consist of a drainable pouch attached to an adhesive wafer. The wafer has a hole cut through the center, which fits over the opening to the anus.

Additional Resources

International Children’s Continence Society
http://www.i-c-c-s.org/ provides in-depth information on “The Management of Dysfunctional Voiding in Children” – A Report from the Standardization Committee of the International Children’s Continence Society. The society’s discussions resulted in guidelines on the assessment, non-pharmacological and pharmacological management of dysfunctional voiding. The final includes relevant research when available as well as expert opinion on the current understanding of dysfunctional voiding in children.

European Urology, Editorials, Twenty Years of Urotherapy in Children: Have We Learned?

Piet Hoebeke, Publ. online 4 January 2006 pgs 426-428

http://www.europeanurology.com/article/S0302-2838(05)00854-7/fulltext

The Agency for Healthcare Research and Quality under the U.S. Department of Health & Human Services lists guidelines in the Management of neurogenic bladder in children. In: Guidelines on pediatric urology.

http://www.guideline.gov/content.aspx?id=14433

It’s the opinion of the International Children’s Continence Society that the most comprehensive programs incorporate continued elimination education, continued voiding diaries and exercises between possible biofeedback sessions

http://i-c-c-s.org/index.php?option=com_content&task=view&id=39&Itemid=55

Secondary Conditions and Disability, Margaret A. Turk, The National Academies Press NAP

http://www.nap.edu/openbook.php?record_id=11579&page=185

http://kidney.niddk.nih.gov/statistics/uda/Urinary_Incontinence_in_Children-Chapter12.pdf

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

Fighting Back Against Abuse in Care Facilities

By Stacey Bucklin

Back in June, we shared the story of Cerebral Palsy Family Network mother Dana DeRuvo. In “Making the Decision to Place a Child in a Residential Center,” she discussed the huge leap of faith she took to give her disabled child a better life than she could provide him. Their story had a happy ending and her son is now thriving in his residential facility.

Although there are many well-run facilities throughout the United States, others are less reputable. Disabled residents of long-term care facilities are vulnerable to abuse and neglect by their caregivers. Fortunately, disability advocates are raising the profile of abuse and neglect in residential care centers and are making strides toward ending the cycle of abuse.

Tara’s Law

In New Jersey, a new law has been proposed that would put strict rules on community care residences. The law, called “Tara’s Law” in memory of 28-year-old Tara O’Leary, a developmentally disabled woman who died due to abuse and neglect, would provide oversight for community care residences. The new law would require yearly evaluations of community care licensees, continuing education programs for staff, and better injury reporting at all levels.

One of the law’s proponents, New Jersey Assemblyman Craig Coughlin, said, “Developmentally disabled individuals rely on their caregivers to be their communications link with the rest of the world. When that link breaks, fails or is ignored, tragedies like the one Tara’s family experienced occur. By creating multiple ways to test those links, we can help prevent future miscommunications from becoming tragedies.” To learn about the specifics of the proposal, read more about Tara’s Law.

It Can Happen to Anyone

Mr. Weisenberg is not only father to a grown son with cerebral palsy, he is also a state assemblyman for New York and the Legislature’s most prominent advocate for people with disabilities. When Assemblyman Weisenberg discovered his son, Ricky, had beenabused by his caregivers and that the abuser was hired at another care facility after being fired, he decided to take action. He filed a lawsuit to raise the profile of his son’s case and bring light to the issue.

 “If it can happen to us, it can happen to anybody,” his wife said. “I just think it’s something necessary that we have to do and bring it to light. We’re not suing for any money; we’re suing to have it be known and have something be done about it.”

The Weisenbergs say they would donate any money received from the case to organizations that serve people with developmental disabilities.

We Can All Make a Difference

The vast majority of care facilities are safe, nurturing places for the disabled residents they house. However, we can’t ignore the facilities that endanger the health and well being of the disabled. It is all of our responsibilities to protect the vulnerable members of our communities and to expose abuse and neglect when we see it. If you suspect abuse, contact your state’s Department of Human Services.

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