Category Archives: Child Development

Cerebral Palsy and Childhood Osteoporosis

By: John Hartford

Although osteoporosis is often associated with aging, it is a common complication of cerebral palsy beginning in childhood.

Osteoporosis is a disorder characterized by lack of bone density or bone mass. Children with these “thin bones” can sustain bone fractures from very little trauma, seriously impacting all areas of their lives. Although some progress has been made in treating osteoporosis in the elderly, there is no cure. Thus, preventing or reducing the effects of osteoporosis and maximizing bone development during critical stages of growth can minimize the lifelong risks of fractures in children with cerebral palsy.

 

Diagnosing Osteoporosis in Children

A bone scan using an x-ray machine is used to determine bone health. The procedure, called a densitometry, measures Bone Mineral Density (BMD). The test is painless and is usually done in a hospital or clinic radiology department. Measurements are most commonly taken of the lower spine and the upper part of the hip. The forearm is scanned if either the hip or the lumbar spine can’t be.

The test is usually sufficient to diagnose osteoporosis in adults, but not children. In 2008, the International Society of Clinical Densitometry released a position statement defining the parameters for the diagnosis of osteoporosis in children. Unlike adult osteoporosis, a diagnosis of osteoporosis in children not only requires a low BMD score, but also a significant history of bone fracture.

 

Causes of Osteoporosis in Children with Cerebral Palsy

Bone development begins the third week of gestation and peaks in adolescence. As described in Bone Density in Cerebral Palsy by Christine Murray Houlihan, MD and Richard D. Stevenson, MD, it involves a complicated mechanical and metabolic process. But basic to bone growth is the relationship between weight, or stress, on the bone, and the mineralization, or strength, of the bone. Cerebral palsy compromises children’s bone growth in a variety of ways:

  • A child with compromised movement will not adequately stress growing bones to prompt mineralization necessary for strong bones.

  • A child who uses a wheelchair or who is bedridden may have limited exposure to the outdoors and the sunlight that helps the body create vitamin D, which is necessary to the absorption of calcium.

  • A child who has difficulty eating may also have nutritional issues that prevent healthy bone growth.

  • Chronic malnutrition from feeding issues may stunt growth, thus impacting the hormones that play a role in bone development.

  • Certain medications, especially those known to control seizures, can impact the absorption of calcium and deter bone growth.

Prevention or Treatment of Osteoporosis

Physical therapy—Regular physical therapy starting from a very young age can help put stress on bones, encouraging bone mineralization.

Nutritional therapy—About one-third of children with cerebral palsy are estimated to suffer from chronic malnutrition as the result of eating problems such as gastroesophageal reflux (GERD), chronic respiratory infections, and pressure ulcers. A nutritionist should assess whether a child is getting enough food and a balanced diet to ensure healthy growth.  Infants require immediate intervention if they have trouble sucking or swallowing.

Vitamin D Supplements—Vitamin D has been shown to increase the body’s absorption of calcium, which is central to bone health. However, a doctor should always be consulted about adding a vitamin supplement to a child’s diet. Vitamin D is NOT recommended if a child is on certain seizure medications, such as Tegretol.

Medications—A variety of medications are available to combat osteoporosis in the elderly, but have not been extensively tested in children. A 2008 study involving children reports positive outcomes in using a combination of vitamin D and Actonel.

 

Surgery Considerations

Children with cerebral palsy should be evaluated for vitamin D deficiency prior to bone surgery, according to a study published in the April-May 2011 issue of the Journal of Pediatric Orthopedics. The study of 70 patients between the ages of 2 and 19 showed that 90% who had been admitted to the hospital for surgeries requiring bone healing were at risk of poor bone healing due to insufficient vitamin D levels.

 

Cerebral Palsy: Developmental Milestones Birth to 12 Months

By Lee Vander Loop
CP Family Network Editor

Many children with cerebral palsy are diagnosed shortly after birth. Others, however, may go months or even years with no diagnosis. Without a diagnosis, valuable early therapies and treatments are delayed.

How is a parent struggling with the question “is my child developing normally?” supposed to tell? If you are concerned, you should not hesitate to talk to your doctor. Trust your hunches. According to research, parental concerns detect 70% – 80% of all disabilities in children. So if your gut is telling you something is not right, chances are, it’s not.

Meanwhile, there are guidelines known as “developmental milestones” to help parents determine whether or not their child is keeping up with his or her peers. These milestones are a set of functional skills or age-specific tasks that most children can do at a certain age range. For children who have suffered a brain injury at birth, however, these guidelines often don’t apply. Depending on the severity and location of the brain injury, some children experiencing developmental delays may be able to achieve milestones only through a variety of therapy and interventions. Others with severe brain injuries may never achieve some developmental milestones.

 

Signs of Cerebral Palsy in Infants Up to 12 Months

The signs of cerebral palsy vary greatly because there are many different types and levels of disability, but an early indication is a delay in controlling movement of the head or arms and legs. This list of cerebral palsy symptoms, divided by age range, is not comprehensive but serves as a good starting point to determine if your child may have developmental delays. If you see any of these signs, call your child’s doctor or nurse.

2 months and older:

  • Have difficulty controlling his head when picked up
  • Have stiff or shaky arms or legs
  • Have stiff legs that cross or “scissor” when picked up
  • Have oral motor difficulties and problems sucking and feeding

6 months and older:

  • Continue to exhibit poor head control when picked up
  • May reach with only one hand while keeping the other in a fist
  • Have problems eating and drinking
  • May not roll over without assistance
  • May not be able to push up with their hands when laying on their stomach

10 months and older:

  • Crawl by pushing off with one hand and leg while dragging the opposite hand and leg
  • Not be able to sit by himself or herself

12 months and older:

  • Not yet crawl or attempt to pull themselves up
  • Not be able to stand with support

Basic Developmental Skills

Cerebral palsy is caused by a problem in the brain that affects a child’s ability to control his or her muscles. Problems in different parts of the brain cause problems in different parts of the body. There are many possible causes of problems, such as genetic conditions, problems with the blood supply to the brain before birth, infections, bleeding in the brain, lack of oxygen, severe jaundice, and head injury. A child who lacks basic motor skills will have difficulty reaching subsequent milestones without help.

The Interdisciplinary Council on Developmental and Learning Disorders Outlines the six basic developmental skills which lay the foundation for all learning and development. Although all children develop at their own rate, growth can be defined in the following areas:

  • Gross Motor – Gross motor skills enable your baby to achieve major milestones such as head control, sitting, crawling, maybe even starting to walk. Children exhibiting a delay in gross motor skills need to be evaluated as early as possible so they can start getting physical therapy to help them strengthen their muscles.
  • Fine Motor – These skills allow a child to hold a spoon, or pick up a piece of cereal between thumb and finger. Children exhibiting delays in these skills will have difficulty holding a spoon, manipulating small objects or grasping items between their thumb and fingers.
  • Sensory – Sensory skills include seeing, hearing, tasting, touching and smelling. A child with a brain injury may have trouble processing information from these senses, a condition known as Sensory Processing Disorder. Normally diagnosed by developmental pediatricians, pediatric neurologists and child psychologists, children experiencing difficulties with sensory processing may exhibit either a “hyper” (over) or “hypo” (under) sensitivity to stimulation of the senses.
  • An infant with hypersensitivity may:

    • Dislike being touched or dressed
    • Seem intolerant of normal lighting in a room
    • Startle easily at small sounds

    An infant with hyposensitivity, may:

    • Seem restless and seek stimulation
    • Not startle or respond to loud noises
  • Language – A child with cerebral palsy may lack the muscle strength in the mouth and tongue to control sounds or may have trouble hearing or processing sound, all of which will delay language. An infant developing normally from birth to 5 months will react to loud sounds, turn her head toward a sound source, watch your face when you speak, make pleasure and displeasure sounds (laugh, giggle, cry, or fuss), and make noise when talked to. Other milestones are listed by the National Institute on Deafness and other Communication Disorders.
  • Social and Emotional– Social and emotional milestones are often harder to pinpoint than signs of physical development. A child from birth to 12 months who has trouble processing sensory input or who has poor control of movement because of a brain injury may be delayed in:
    • Crying to express distress or to attract attention
    • Fixating on faces
    • Smiling purposefully at certain people (mom, for example)
    • Cooing or laughing to attract attention
    • Playing “peek-a-book” or other game
    • Responding to their own names
    • Developing stranger anxiety

    A full list of both social and emotional milestones is listed here.

    An Important Note about Developmental Milestones

    Developmental milestones are only guidelines. No two babies are alike and no two develop the same, though most reach certain milestones at similar ages. Every child develops at their own rate. If your child was born prematurely, you will need to look at the guidelines a little differently. Also, all human development depends on environmental stimulation. A child deprived of a loving, nurturing and stimulating environment will experience developmental delays.

    Your baby’s physician will evaluate your child’s development at each well-baby visit. Don’t be surprised if the pediatrician tells you not to worry, to be patient, to give your child more time to develop. Often, that’s what parents hear, especially in the early stages of investigating their child’s apparent delays. And it’s often true. Children develop at different rates; the pediatrician is well aware that many children show sudden bursts in development rather than slow, steady growth.

    On the other hand, your pediatrician may recommend that a developmental screening be conducted. Its purpose is to see if your child is experiencing a developmental delay. The screening is a quick, general measure of your child’s skills and development. It’s not detailed enough to make a diagnosis, but it will show whether a child should be referred for a more in-depth developmental evaluation.

    Resources

    You can find a wonderful interactive Milestone Checklist at the CDC, provided by the National Center on Birth Defects and Developmental Disabilities. It details specific developmental accomplishments and allows sharing of forms with other caregivers for their input. http://www.cdc.gov/ncbddd/actearly/milestones/index.html

    The American Academy of Pediatrics offers a Parenting website, healthychildren.org: Ages & Stages:

    http://www.healthychildren.org/English/ages-stages/baby/pages/Developmental-Milestones-1-Month.aspx

    National Library of Medicine, National Institute of Health, Medline Plus, Infant and Newborn development

    http://www.nlm.nih.gov/medlineplus/infantandnewborndevelopment.html

    March of Dimes, Your Growing Baby

    http://www.marchofdimes.com/baby/growing_indepth.html

    Center for Disease Control and Prevention, CDC, Child Development

    http://www.cdc.gov/ncbddd/child/

    Further Reading

     
    Cerebral Palsy: Developmental Milestones 12 Months

    Cerebral Palsy: Developmental Milestones 18 Months

    Cerebral Palsy Developmental Milestones Two Years

    Cerebral Palsy: Developmental Milestones Three Years

    Cerebral Palsy: Developmental Milestones Four Years

    Cerebral Palsy: Developmental Milestones Five Years

Is Summer Camp in Your Child’s Future?

By Casey Daniel

Summer is almost here and if you’re a parent of a child of a certain age, you start hearing chatter about summer camps, day camps and all fun activities typical children enjoy. But what about your child who uses a wheelchair, or has difficulty speaking or eating? Is this in his or her future?

Definitely! There are camps in many states and across the nation that serve children with special needs. At least 32 camps specifically serve children with cerebral palsy, according to Needymeds.org, an organization that helps find affordable medications for those who can’t afford them.

But how do you choose the right camp? And, more importantly, how do you know whether your child is ready for a camp experience?

Summer camp can do wonders for a youngster’s self-confidence and social skills, not to mention new skills learned from camp activities. Sure, it can be hard letting go, especially if your child has a severe disability. But keep in mind that even though they miss you, they’re probably going to have a ball!

Choosing a Camp

The American Camp Association provides a wealth of information about types of camps and helpful tips for choosing one. Best of all, it offers a searchable database of U.S. camps. Just plug in your requirements, such as camps that serve children with mental or physical disabilities, and appropriate camp choices appear. You can even plug in cost parameters.

Another option is to call local chapters of major disability organizations about camps in your area. Many organizations publish lists of camps and can connect you with camp directors and former campers.

Paying for a Camp

Of course, part of your research will involve figuring out what you can afford. The cost of camps varies widely, with some high-end special-needs camps costing thousands of dollars for multiple-week sessions.

You can help fund your child’s camp experience by applying for scholarships. Experts say to do so from December through March, because the money is gone by April or May. If you have missed the boat this year, you can start thinking of next year. The early bird gets the worm in terms of scholarship funding.

Still other sources of funding include charitable organizations and fraternal organizations such as the Lions, Kiwanis, and Rotary Clubs, all of which sponsor special-needs camps. And depending on your child’s specific special need, he or she may be eligible for financial aid from your state. Other sources of scholarships include religious or ethnic charities.

One thing to know: You usually first need to find a camp that can take your child — most of these organizations send the scholarship money to the camp in the child’s name, not to the parents directly.

Questions to Ask of a Specific Camp

After you’ve narrowed your choices, what do you do next? Handing over your child to complete strangers for a few days or longer requires lots of trust. Don’t be embarrassed to ask a lot of questions and repeat them until you understand the answers clearly. It is important that you feel as comfortable as possible about the camp and what it offers.

I would pay close attention to how camp staff responds to what you believe your child will need for a good camp experience. Do they listen? Do they treat your concerns with respect? Are they willing to work with you? Although camp staff has their own expertise and experience to offer, you know your child and what it takes to keep them safe and comfortable.

Moving on, according to a great article on camps and children with disabilities on Disaboom.com, basic information and questions to ask include:

  • Cost Is it free (many are), is it on a sliding scale according to the parent’s income, or can the state help pay the camp’s fees? Look at all of your options. Special-needs camps try their best to make sure their camping experience is an option for any family, regardless of their income.
  • Do they have a specific camping session tailored to cerebral palsy? Many camps have a wide variety of “specialized” weeks all summer, covering all the disability bases. It’s going to be a much better camping experience for your child if the session he or she attends has staff members well prepared to handle their specific disability.
  • What age groups do they cluster together, and what session is your child eligible for according to his or her age? Most special-needs summer camps split up the sessions as follows: 6- to 13-year-olds, and then 14- to17-year-olds. The smaller the gap in ages clustered together, the more finely tuned your child’s camping xperience will be.
  • What’s the on-site medical care and caregiver situation like? Most camps have dozens of caregivers and five or six (depending on how many campers are in each cabin) are then assigned to each cabin. Most of these caregivers are college students who are studying for some sort of medical degree and can be a lot of fun for the kids. And lastly, make sure they have either an RN or MD on-site 24/7. Many of the special-needs summer camps are miles away from hospitals or clinics.
  • What about transportation? Many camps even go as far as providing round-trip accessible transportation for your child (the pick-up point usually being at a nearby disability rehab center). This service makes it easier on the parents, and also gives your child an additional opportunity to connect with the other kids attending camp.

Is Your Child Ready?

Every child matures at a different rate. This is no different for a special needs child. Pushing an unwilling child to go to camp is never a good idea. Ask yourself these questions to determine whether or not your child is ready for camp:

  • Has he/she been away from you before and how has that gone? Day camps offer a good “training experience” for overnight camp.
  • Can he/she be soothed or comforted by people other than family members?
  • In what ways does my child need to be prepared for the camp experience, for example, sleeping in a different type of bed?

Last but not least, if you are feeling anxious about the whole camp thing, try not to communicate that to your child. Children are sponges when it comes to soaking up signs of stress from their parents, so stay calm and confident. Going away to camp – even if it’s just across town – could be the best thing that ever happened to your child.

The Cerebral Palsy Family Network provides more information about cerebral palsy and interaction among parents of children with cerebral palsy on its Facebook page.

 

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