Showing posts with label mothers. Show all posts
Showing posts with label mothers. Show all posts

Wednesday, February 6, 2013

Feeding Tubes for Nutrition and Medication

Feeding Tubes for Nutrition and Medication

By John Lehman
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:


Join Our Family

Sign up for our free e-newsletter for more blogs, articles and news about CP kids and their families.

Thursday, December 27, 2012

Doctors Using Cord Blood to Treat Cerebral Palsy

Have you considered storing cord blood for later use? Many children with cerebral palsy have benefited from this procedure. Read more about cord blood storage and the benefits in our latest "In the News" article.
http://www.cpfamilynetwork.org/in-the-news/doctors-using-cord-blood-to-treat-cerebral-palsy

Wednesday, December 26, 2012

Advice to Expecting Parents about Assisted Delivery Using Vacuum Extraction

When a mother is unable to deliver a child on her own, assistive equipment may be used to help speed the birthing process. Because the need for vacuum extraction (VE) is always a possibility during childbirth, parents need to be aware of what it entails and what questions to ask of their doctor.

http://www.cpfamilynetwork.org/blogs/advice-to-expecting-parents-about-assisted-delivery-using-vacuum-extraction?utm_campaign=CPFN+Eblast+-+Dec+26.+2012&utm_medium=email&utm_source=newsletter&utm_content=Vacuum-Assisted+Delivery

Wednesday, September 12, 2012

Cerebral Palsy: Developmental Milestones Birth to 12 Months

Cerebral Palsy: Developmental Milestones Birth to 12 Months

By Lee Vander LoopCP 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 enables 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/

Monday, August 6, 2012

10 Alternatives to Restraining a Child with Special Needs

Special needs caregivers often report that they are reluctant or upset if they have to physically restrain their children in certain situations.

The purpose of restraining is to keep something from continuing to take place, and is often a last resort. People wonder if there are ways to prevent the need for it at all.

Here are 10 different strategies that parents and caregivers can try to minimize and avoid physical restraining their children.

http://www.cpfamilynetwork.org/in-the-news/10-alternatives-to-restraining-a-child-with-special-needs

Wednesday, August 1, 2012

How I Got Medicaid to Pay for Disposable Diapers

How I Got Medicaid to Pay for Disposable Diapers

By Xiomara Montes
My daughter, Xaymara, is four years old. She has spastic quadriplegic cerebral palsy, as well as  epilepsy, seizure disorder and cortical blindness. We are a military family. When Xaymara was born premature at 29 weeks and we could see her development delays, we decided to move from Puerto Rico to the United States to provide her a better quality of life. We gave up everything we had in Puerto Rico to make the move, but her health and medical care were the most important things to us.
Xaymara receives Supplemental Security Income (SSI) and is also covered by Medicaid. As a military family, we also have military insurance. This insurance has paid for all the doctors, specialists and medical equipment that my daughter has needed. The one item we had trouble getting our military insurance to cover was disposable diapers. Here’s how we solved that problem:
First, we submitted the expense to the insurance company and received a denial. Then we called the company that supplies the diapers and told them we had been denied, but that we were covered by Medicaid. The company asked us to send them a “letter of necessity” from our doctor. We called the doctor and asked him to fax the information to the company. We also sent the company our Medicaid information. When the company received approval from Medicaid, they began sending us a monthly supply of diapers.
The lesson from this story is that even if you are denied by one agency, keep trying. Also, enlist the help of the company that sells the product or service you need.
Letters of necessity are super important when trying to get payment for equipment or supplies. For more information read Tips for Writing Letters of Medical Necessity.
CP Family Network offers more information on Medicaid and other government funding programs for children with cerebral palsy. Other helpful websites include: