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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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.

Let’s Talk About Cerebral Palsy Myths

In acknowledgement of National Cerebral Palsy Awareness Day on March 25, I wanted to talk about some common CP myths: children with cerebral palsy are mentally disabled, will never walk or talk, can never live independent lives, and developed cerebral palsy from an unknowable and unpreventable neonatal condition.

The thing about myths is that they originate in a grain of truth. Although cerebral palsy, by definition, is a disorder that affects motor function, some children with CP also experience damage to the part of the brain that controls thinking. They suffer from lifelong cognitive disabilities. Others, because of the extent of damage to the area of the brain that governs movement, will need a walker or wheelchair to get around, and may need technical aids to help with speech.  And yes, the reason why some children develop CP is never determined.

But, the bigger truth about cerebral palsy is that it is a disorder characterized by a range of function, from mild to severe. Many children with CP are very bright. I read a story recently about Mike Berkson, a college student with CP who compares himself to a blind man: his lack of one sense has given him heightened capabilities in other areas; in his case, diminished motor capacity has led to heightened mental acuity. Berkson, while confined to a wheelchair, has made headlines with his insights into friendship and living as a person with disabilities.

By far the most common challenge faced by a child with CP is learning to walk, and then to walk with a steady gait. But many do, to the extent that you wouldn’t know they were ever impaired. This goes for talking, too. Just Google “famous people with cerebral palsy” and you’ll find a long list of actors, authors, artists and comedians.

The last great myth about cerebral palsy is that it is never the result of doctor, nurse or hospital error.  According to the medical community, the origin of cerebral palsy is mostly a mystery, but never anyone’s fault. This argument becomes full-throated when it comes to evidence that labor and delivery staff misinterpreted tracings from an Electric Fetal Monitor (EFM) showing the fetus was in trouble and failed to take the required action.

I regularly disprove this myth and others in court. (You can read more about this issue in my article “How Electronic Fetal Monitoring Can Prevent Cerebral Palsy” that first appeared in CP Magazine.) I present evidence that shows if a doctor or nurse had followed approved medical procedure, a lack of oxygen to the fetus and brain injury would not have occurred and the child would not have cerebral palsy. A winning verdict or settlement provides the family with the money they need to care for a brain-injured child the rest of his or her life, which is the fair and just outcome.

Join me in cerebral palsy “myth busting” this week. Wear a green ribbon to show your support of the cerebral palsy community.

Howard Janet has been representing plaintiffs in complex civil litigation for more than 30 years in the areas of medical malpractice, birth injuries, “whistleblower” lawsuits, and environmental litigation. Best Lawyers in America® honored him as the 2012 Lawyer of the Year–Personal Injury, Baltimore, MD. READ FULL BIO

Cerebral Palsy Forum Launch!

We are so excited to launch our new cerebral palsy forum, specifically designed to give the community a place to ask and answer questions about CP. Please take some time to sign up and share this important resource. Thank you all so much for being the community you are. Now go out there and keep spreading that positive vibe and amazing information!

http://www.cpfamilynetwork.org/cerebral-palsy-forum

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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Are Home Births Safe?

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

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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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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.

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Reconnecting with My Mother: A CP Child’s Story

Reconnecting with My Mother: A CP Child’s Story
By Jennifer Resetar
Writing for CP Family Network

This blog is based purely on my experience as someone who has grown up with cerebral palsy and has endured hardships and overcome them. I hope my story can help parents of disabled children learn how to love and accept them and encourage them to pursue their dreams.

My Story
I grew up as the only person in my family with a disability. I don’t want to use the word severe, as my cerebral palsy is not as severe as some cases. Due to my disability, my adoptive mother (who was 23 years old when she adopted me) was always stressed out. I was never very close to her until after I got married. She even ‘bullied’ me to an extent.

When I visited her in 2009, she said something I will never forget. I confronted her about why we were never close and she said, “I gave my all physically, but I could not give my heart.” This didn’t hurt me as I thought it would. Instead, it answered my question of “Why?” Why was I never close to her? Why did I always feel put down by her?

As a result of my childhood experience, I want to encourage other families with children with disabilities to be accepting. Don’t baby them so much when they are older, but encourage them, push them to do their best to achieve their goals in life. One thing my mother always did was push me. I did not see this as a positive thing until recently, but I am glad she did. It is also good to let your child know that it is not his/her fault for having the disability. Patience is another good tool to have; be patient with your child. And lastly, if your child has siblings that do not have disabilities, teach them how to be accepting of their brother or sister with a disability. If they attend the same school, teach that sibling to stick up for their brother or sister when they are being bullied or picked on by other kids.

I am proud to say that today, my mother and I are now close and she is one of my biggest supporters in my many endeavors. I hope this blog helps parents, both new and seasoned, to understand that if your child has a disability whether physical or mental, they can still achieve their goals, whatever those goals may be. Please, support and encourage them as much as you can. I promise you, your child will thrive with support and encouragement!

About the Author
Jennifer R. Resetar lives in Orlando, Florida. She is pursuing her dream of becoming an author and has one book published. She enjoys standing up for and helping others with disabilities.

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Tips for Writing Letters of Medical Necessity

Letters of medical necessity are critical to getting reimbursed for any equipment or service. These are letters from your doctor or therapist. Such a letter must include certain, specific information or it will automatically be denied.

Many doctors and therapists are familiar with what needs to be in a letter of medical necessity. But if they don’t send the right information, it just means a longer delay and headache for you. Don’t take that chance.

You can help by writing down the answers to as many of the questions below as you can and giving it to your doctor or therapist. This will save them time and hopefully speed the process along.

1. Patient name, diagnosis, and the date the doctor prescribed the service or equipment needed.

2.  Patient’s diagnosis and how it relates to the service or equipment needed.

3.  Why the patient needs the service or equipment.

4. Patient’s overall therapeutic goals and how the service or equipment will help him meet those goals.

5.  A description of the product or service in as much detail as possible. This can come from the therapist or from the company that supplies a product. (You may be able to get this online).

6. The doctor or therapist’s phone number and email address, in case the insurance company has any questions.

Make a note of the date the letter was mailed. If you haven’t heard anything after 2-3 weeks, call the insurance company or funding agency and ask about the status of the claim. Make sure you write down the name of the person you talk to and get their permission to call them with any follow-up questions. Ask when a decision might be expected on payment.

If that date comes and goes, call again. Let them know you are tracking the request with dates and people’s names. But stay as pleasant as possible. You want their cooperation. If the agency or insurance company is unresponsive, get the doctor or therapist to help.

This good example of a letter of medical necessity is from Dr. Freeman Miller’s book Cerebral Palsy: A Complete Guide to Caregiving.

You can find more information about cerebral palsy and resources for parents and children with cerebral palsy at www.cpfamilynetwork.org.