Speech Therapy: Vital To Opening a Child’s World

By Lee Vander LoopCP Family Network Editor

Years ago, before the invention of augmentive communication devices, children who displayed an inability to communicate were assumed to suffer from severe developmental disabilities and treated as such.

Imagine the heartache and frustration of a child with sound cognitive abilities or mild to moderate learning disabilities trapped in their body as a result of their inability to communicate. Augmentive communication devices have opened doors and given new lives to many individuals, providing a means of speech communication for those who would otherwise have no means of expressing themselves and their needs. Thankfully, speech therapists and augmentive devices are common today and can help most any child communicate in some way with the world around him or her.

The Basics of Speech Therapy

Speech therapy is the treatment of communication disorders, regardless of the origin. Therapists that work in the field of communication disorders are known as speech therapists and speech-language pathologists. Therapy can consist of a series of exercises and drills to strengthen the muscles involved in speech, and improve oral motor skills needed for speech as well as swallowing. Speech therapy may also include sign language and the use of picture symbols or augmented and alternative communication devices.

Many children with cerebral palsy experience some level of challenge with speech. Their challenges could be due to cognitive delays as in the case of mental retardation and learning disorders, or may be the result of damage to the area of the brain that facilitates speech. The speech center of the brain is referred to as the Broca’s area and is located in the left side of the brain for right-handed and most left-handed people. Nerves from the Broca’s area lead to the neck and face and control movements of the tongue, lips, and jaw.

Children learn speech from parroting what they hear in their environment. Children with hearing disabilities also experience challenges with speech because they cannot clearly hear sounds they and those around them are making. Children with cerebral palsy and speech challenges also commonly suffer from feeding disorders. Therapy to strengthen speech muscles also greatly benefits eating and swallowing.

Issues Involving Specific Types of Diagnosis

With children diagnosed with spastic cerebral palsy, muscle tightness (hypertonia) may cause the tongue to constantly push up against the roof of the mouth, or palate, making speech all but impossible. Children diagnosed with hypotonia (low muscle tone) likewise would experience challenges with speech, since the muscles of the mouth and tongue work together to form sounds.

The tongue is the primary organ involved in speech. It is also the primary organ of taste, chewing and swallowing. In chewing, the tongue holds the food against the teeth; in swallowing, it moves the food back into the pharynx, and then into the esophagus when the pressure of the tongue closes the opening of the trachea, or windpipe. It also acts, together with the lips, teeth, and hard palate, to form word sounds. Early intervention in this area is vital to a child’s development.

What to Expect From Your Child’s Therapy/Therapist

Communication-Your child’s physical or speech therapist should be communicating openly with you as to what they are doing, what muscles they are working with and why they are taking the approach they have chosen. In the case of oral motor and swallowing skills, your child’s therapist should take every precaution to minimize the risk of choking and aspirating.

You should also expect the therapist to communicate with your child. Most young children are anxious and fearful with strangers. The therapist should be working and communicating with your child to win your child’s trust and confidence. Regardless of whether your child is capable of comprehension or capable of communication, the therapist should be treating your child with respect, patience and compassion. If you meet a therapist that treats your child like an OBJECT and not a human being, FIND ANOTHER THERAPIST!

Teaching-Your child’s therapist is not only working with your child, but should also be teaching you so that you can be consistent in your child’s care and contribute to help your child achieve and maintain goals.

Questions to Ask:

• Communication works both ways. You should be communicating any concerns and questions you have to the therapist. If necessary, keep a journal and note problems and challenges you see your child may be experiencing between therapy sessions.

• Ask the therapist what you can do between therapy sessions to help your child maintain their progress.

• Ask how often you should work with your child and the duration of each session.

• If your child has been prescribed adaptive or augmentive equipment, inquire as to how often you should use the equipment and the duration of each session.

Compassion and Patience-You have the right to expect compassion and patience from your child’s therapist. If you feel a therapist is being overly aggressive and seems to be traumatizing your child… STOP THEM. Effective therapy should not be traumatizing. This is contradictive and will result in your child relating therapy to pain.

Accountability-Your child’s therapist should have written goals. You should be provided with the results of the first assessment and goals the therapist hopes to achieve in addressing issues and challenges your child may be experiencing. The therapist should do periodic assessments and provide you with goals for improvement and notify you of progress or regression on a regular basis.

Coordination-You have the right to expect your child’s therapist to work with your child’s educators in developing your child’s Individual Education Program (IEP) and to be an active member of your child’s IEP team. In the case of a private physical therapist not associated with your child’s school, he or she should be communicating with your child’s teachers and involved in the IEP process to make sure everyone is working toward the same goals.

The therapist should also be coordinating and communicating with your primary care doctor about any needed adaptive equipment or communication devices, and should keep the doctor informed of your child’s progress or problems. If the therapist feels your child would benefit from a specific communication device or piece of adaptive equipment, it is their responsibility to communicate the need to the physician and to follow-up in obtaining the device.

Continuity of Care-You have the right to demand continuity of care for your child. This means that the same therapist works with and follows your child throughout the therapy process. Of course, this isn’t always possible, but it should be the goal of any agency you work for. If your therapist belongs to a group or agency and they are sending a different therapist with each session, find another agency. This is not acceptable.

Visit our website!

http://www.cpfamilynetwork.org

References

Scienceclarified.com

National Speech/Language Therapy Center

Health Science

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.

Join Our Family

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

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

Raising a Family with a Special Needs Child

By Lee Vander Loop
CP Family Network Editor

Raising a family with multiple children today can be challenging. Add to the mix a child with special needs, and parenting takes on a more daunting role. Coping with the many physical, emotional and social needs of the family unit demands a team effort. Here we’ll try to provide tips and guidance on how to “hold it all together” to raise a healthy family with multiple children and a special needs child.

In my 26 years of raising four children, the oldest of whom has severe spastic quadriplegia cerebral palsy, I’ve had countless people ask me “how did you do it?”  My children are very close in age and my husband’s job took him out of town frequently. In writing this paper I look back and analyze how I raised four well-adjusted children, met the many demands of caring for our special needs daughter, Danielle, and managed to keep my marriage and sanity in tact.

Spouse Support Critical

First and foremost I had the support of my spouse. I use the phrase “passing the baton” to describe how my husband and I would manage the constant demands of meeting Danielle’s needs and the emotional, social and academic needs of our other children. My husband and I entered our marriage with the understanding that we both would give 150% of ourselves to each other and to whatever we had to overcome. Although I was and am the primary care giver, my husband is actively involved in Danielle’s care. Decisions are made together in terms of medical management of Danielle’s cerebral palsy. We share responsibility for everything.

Stress, Parenting and Marriage

Raising a multi-child family can put a strain on any marriage. Having a special needs child included can test a marriage to its core. It’s been said that a special needs child can “break or make a marriage.” Fortunately, in our case, parenting a special needs child made us stronger as a couple and as individuals. Many studies have been conducted assessing the stress factors on marital relationships in relation to raising a child with a disability. A 2006 study by Boston College examined the contribution of the marital relationship to the well being of both mothers and fathers of children with developmental disabilities. The findings support the importance of the marital relationship to parental well-being and illustrate the value of including fathers in studies of children with developmental disabilities.

Another study looked at how the mother’s stress affected the child’s development of social skills and related behavioral issues. Not surprisingly, it found that the more stressed the mother, the worse the child’s social skills over time. The study concluded that intervening in mom’s stress early on could help children develop down the road.

Rules of the Marriage Road

My husband and I early on agreed to some marital ground rules for handling marital stress. These included:

• “Agree to disagree.” In any realistic relationship there are disagreements. Compromise if possible. If not, take turns in giving in graciously and move on.

• Confine Adult Conflict to Adults. If you have to argue, do it in private and not in front of the children or the home health aides.

• Date Night – Try to establish quality time with your spouse, even if it’s just one night a month. I was fortunate that our daughter’s school nurse was available to provide us that respite night out and her teenage daughter provided child care for our other children.

• Establish a Support Network – Don’t make your spouse your only support network. It puts too much stress on the relationship. Consciously make an effort to develop connections with the special needs community, your neighbors and your friends. A good place to start is with your local ARC chapter. I initially made contact with the local ARC in search of child care for my daughter and found a caregiver who was, herself, the mother of a special needs child. She not only helped me with Danielle, but my other children as well. More than 20 years later we’re still friends.

I developed lists of competent nursing help and scheduled nursing hours for after school hours so I could take the other children to softball, baseball, keyboard or other activities. This allowed me to connect with other parents.  I wasn’t shy about explaining to them what my situation was. As a result, they understood when I couldn’t provide transportation for a play date or sleep over, and were happy to step in to help. Making friends with neighbors assured that I always had someone to sit with Danielle if I had an emergency come up, like having to retrieve a sick child from school.

Bottom line: Let people know what your needs are. Let people help. Build your support network.

Set Routines are Essential

All families need a routine and continuity, children especially. Set a routine for your family that includes meal times, set bed times for the children and routine evening events such as reading  to the children before their bed time, and established times for homework and chores.

In our family a routine was essential. My husband’s job necessitated a routine dinner hour so he could eat, sleep and be up for work by midnight. Keeping three children busy and relatively quiet while dad was sleeping was challenging. Routine dinner times, bath times and bed times established a rhythm in our household that comforted and soothed. An 8 p.m. bedtime when the kids were preschoolers allowed me a short respite at the end of the day.

Spread the Work Around

Coordinating, planning and coping with the management of a household, possible employment, doctor and therapist appointments, and the physical, medical, academic and social demands of each family member requires a cooperative effort by everyone involved. Make sure you spread as much responsibility as you can to other family members.

Assign chores to everyone in the family, including your special needs child if they have the ability. If you’re feeling overwhelmed with very young children, consider hiring a teen neighbor at times to assist with some of the light housekeeping or laundry chores. The family unit is a team unit. Children should be taught to help around the house and contribute to the team effort of the family. Assigning simple chores to all the children provides them with the sense of pride in their accomplishments and contributions.

In our home the children were presented with a list of the daily chores that needed to be completed and they chose what would be their daily job. It didn’t change. Everyone knew who was responsible for taking out the garbage or the cleaning up after the pets. With young children a reward system helps. The reward can be as simple as a “milk and cookie treat” or a favorite activity after cleaning up toys or completing their assigned chore. We paid our children a small weekly allowance for completion of chores. Completion of their chore gave them a sense of pride in their efforts, accomplishments and family contribution and taught them the value of a job well done. The allowance served as a motivating monetary reward, along with a money management lesson learned when they decided to save or spend their wealth. There was always positive re-enforcement and “mom’s praises of gratitude” for their efforts and contribution.

In the case of assisting with their older special needs sibling, I didn’t put any of the responsibility of our daughter’s care on her siblings with the exception of turning off a feeding pump or pushing a wheel chair, a task they all took great pride in when they were young.

Foster Interaction

Our children learned early to interact with Danielle, to speak to her normally even though she can’t understand or communicate. We pasted their art work in Danielle’s room, which, from its location, was a busy thoroughfare in our home, encouraging constant contact. When they were very young, I explained to our children that Danielle was different because she had a “boo boo” in her head. They called her by the nick name “boo boo” for many years.

Create “Moments”

Life is a combination of moments. When raising a multi-child family and parenting a child with special needs, sometimes moments is all you have. Family at-home movie nights, pizza nights and nightly family dinners are wonderful examples of routines that bring everyone together for moments of quality time.

Scream When You Need To

No one is super human. Being an effective, supportive and loving parent often dictates we place our own needs, emotions and wellbeing secondary to our spouse and children’s needs. Raising a child with special needs can mean facing many moments of fear, frustration and despair. How you manage those times is important. We sometimes feel that we have to always be strong, invincible and in control. That’s not a realistic expectation of our selves. It’s unhealthy to keep strong emotions bottled up. When you feel things building up, find a moment for yourself to deal with these emotions. When I feel a “melt down” coming on, I call a friend or family member with whom I feel comfortable laughing and crying. I talk it out. I cry, scream, kick a garbage can, whatever helps me get through the moment.

Of course, looking back is always easier than when you’re in the middle of it. I learned to take parenting one day at a time, just as you are doing. It wasn’t easy. Still isn’t some days. But then some days are a joy. Talking to each other, sharing, allowing friends and family to ease the burden are all ways to help us get through the journey.

For more information please visit:

http://www.cpfamilynetwork.org/

Eating Problems Stressful but Treatable - Caring for a child with Cerebral Palsy

Eating Problems Stressful but Treatable

By Lee Vanderloop

When my first daughter was born, she exhibited a total absence of any type of oral motor skill and necessitated a feeding tube from birth. Her birth injuries occurred as a result of “cord complications of unknown origin.”

When our second child was born with cord complications, my husband had orders from me (even before the delivery) not to leave our new baby’s side until he could assure me that she was neurologically fine. My husband kept his word and remained inseparable from our daughter, even when the staff discouraged his presence as she was transferred to the pediatric ward and isolette. After he was able to do his own visual assessment, he reported back to me that as soon as she stuck her fist in her mouth and he heard that sucking sound, he felt confident that she was fine. That same child was recently awarded a Bachelor’s Degree in Biology. Not all incidents of birth trauma result in cerebral palsy, just as not all incidences of cerebral palsy result in feeding disorders.

There’s nothing worse than an infant or child with eating problems. It is constant, daily stress for both child and caregiver. Moreover, eating issues are serious and need immediate intervention and treatment. Fortunately, a lot is known about eating problems and treatments are available.

Causes and Symptoms

When cerebral palsy does result from birth injury, in the same way it may affect cognitive or gross and fine motor abilities, it can also impact oral motor function.  Muscles in the jaw, mouth, tongue, lips and cheeks are designed to work in harmony in the movement, breaking down and ingesting of foods and fluids. The same impulses that trigger “hypertonia” or “hypotonia” in the extremities can also impact oral muscles in the same way.

Damage to cerebral pathways or portions of the brain responsible for the impulses that facilitate oral skills can result in a variety of feeding disorders and oral motor dysfunction. Dysphagia is the term used to describe problems with swallowing.

• Following are signs and symptoms of feeding and swallowing problems in very young children:

• Arching or stiffening of the body during feeding

• Irritability or lack of alertness during feeding

• Refusing food or liquid

• Failure to accept different textures of food (e.g., only pureed foods or crunchy cereals)

• Long feeding times (e.g., more than 30 minutes)

• Difficulty chewing

• Difficulty breast feeding

• Coughing or gagging during meals

• Excessive drooling or food/liquid coming out of the mouth or nose

• Difficulty coordinating breathing with eating and drinking

• Increased stuffiness during meals

• Gurgly, hoarse, or breathy voice quality

• Frequent spitting up or vomiting

• Recurring pneumonia or respiratory infections

• Less than normal weight gain or growth

Sucking at Birth

Many children with cerebral palsy experience some degree of oral motor dysfunction. This may first become apparent in a diminished ability or total lack of ability to suck at birth. A study conducted by Children’s Hospital of Philadelphia assessing sucking behavior of preterm neonates as a predictor of developmental outcomes affirmed that sucking performance at 40 weeks Post Menstrual Age (PMA ) was significant in terms of predicting development mental status one year later.

Since PMA is not a well-known term, I’ll explain. Postmenstrual age is the time elapsed between the first day of the last menstrual period and birth (gestational age) plus the time elapsed after birth (chronological age). Postmenstrual age is usually described in number of weeks and is most frequently applied during the perinatal period beginning after the day of birth. Therefore, a preterm infant born at a gestational age of 33 weeks who is currently 10 weeks old (chronological age) would have a postmenstrual age of 43 week.

In other words, if your baby isn’t sucking normally by several weeks after birth, it’s important to talk to your doctor.

Feeding Tubes

A baby who can’t take in enough nutrients to stay well-nourished may need to be fed by way of a tube. The benefits of tube feeding, also called enteral feeding,  include better growth and nutrition, improved hydration, improved bowel function and consistent medication. It can also greatly free the family from anxiety and improve quality of life for both care givers and the child.

There are also disadvantages. If the child has gastroesophageal reflux, aggressive enteral feeding may increase his or her risk of aspiration or vomiting. Other physical disadvantages are diarrhea, skin breakdown or anatomic disruption. Mechanical disadvantages include a dislodged or plugged up feeding tube. Metabolic risks include blood sugar and bone density issues.

Tube feeding can be short-term or long-term, depending on many factors. Most children receiving enteral feedings can continue to receive oral feedings to fulfill the pleasurable and social aspects of eating. All infants and young children require oral-motor stimulation for developmental reasons.

Doctors will make a decision about whether a child needs to be tube fed based on the following factors:

• Inability to consume at least 80% of energy needs by mouth

• Total oral feeding time more than four hours per day

• Weight loss or no weight gain for a period of three months (less for younger children and infants)

• Weight for height (or length) less than 5th percentile for age and sex

• Triceps skinfold less than 5th percentile for age

• Serum albumin less than or equal to 3.0 g/dl

That said, my research on the topic uncovered a 2011 study of a systematic review of medical literature about tube feeding versus oral feeding in children with cerebral palsy. The study noted some risks and benefits of both, but concluded that there’s not much documented information in medical circles about whether one is better than the other and more clinical trials are needed. So, as in all cases involving medical decisions around cerebral palsy, parents need to do their homework and keep asking questions.

Here are some of them:

1. Are there reasons why tube feeding shouldn’t be done? (For example, the family lives too far from local hospitals in case of complications. The caregiver isn’t in a position to learn or carry out necessary procedures.)

2. Are there medical conditions that need to be addressed first? (Such as gastroesophageal reflux, risk of aspiration)

3. Where will the tube be inserted? (stomach, duodenum, or jejunum)

4. What is the plan for oral-motor stimulation after the tube is inserted?

Eating and swallowing problems may improve as the child grows, with time, and with treatment. Feeding with a tube and be discontinued with no ill effects. However, a decision to stop tube feedings requires the same careful planning that went into the decision to start it.

Therapy

Some children may experience some degree of difficulty but not serious enough to warrant a feeding tube. A child may exhibit sensitivity to different textures and consistencies, or the temperature of a food substance, i.e., cold vs. hot, but not experience swallowing or speech difficulties. A child may be able to swallow but have difficulty with speech, chewing or moving food around in their mouth. There may be drooling and exhibit an inability to manage oral secretions requiring suctioning or medication. With children diagnosed with spastic cerebral palsy, the tightness of the muscles (hypertonia) may cause the tongue to constantly push to the palate, making oral motor skills, swallowing and speech all but impossible.

Children with any of these problems benefit greatly from speech therapy and occupational therapy services, and the attention of a speech language pathologist.

Treatment

Depending on evaluation and testing, there are a number of treatments available for children with eating and swallowing problems. These range from total tube feeding to speech and nutritional therapy. The treatment plan should be decided jointly by the primary care physician, the caregiver, a speech-language pathologist and a nutritionist. Following are some of the treatment options:

• Medical intervention (e.g., medicine for reflux)

• Direct feeding by tube

• Nutritional changes (e.g., different foods, more high calorie food)

• Changes in posture or position to enhance feeding

Therapists can also work with your child on the following:

• Strengthening mouth muscles

• Strengthening tongue movement

• Improving chewing

• Accepting different foods and liquids

• Improving sucking and/or drinking ability

• Coordinating the suck-swallow-breath pattern (for infants)

• Altering food textures and liquid thickness to ensure safe swallowing

Resources

The Mayo Clinic

MedlinePlus

For more information please visit:

http://www.cpfamilynetwork.org/

Parent Chooses Hyperbaric Oxygen Treatment for Cerebral Palsy Daughter

By Lisa Viele

Lizzy Viele

(Editor’s note: hyperbaric oxygen therapy is a controversial treatment for cerebral palsy. This is one family’s story about their decision to try it)

I was surprised to hear that he said, “I love you.” From just one round of treatments? His mom was beaming and could barely contain herself. “He can also sit up for 20 minutes all himself,” she said grinning. Now I was even more curious about Hyperbaric Oxygen Therapy treatments.

I just stood there. Speechless, in the church where we both take our children to the special needs ministry. It is the only church in our area that has it. Each child has a person just for them. My daughter, Lizzy, is a healthy and happy 11-year-old with CP and microcephaly. She has numerous disabilities and delays. She has never spoken a word. So when this mother said that her non-verbal son spoke those words, I will admit, I was jealous.

I want the best for my Lizzy. I didn’t expect to be here. By here, I mean a life with a child with so many disabilities. I never thought that I would be that statistic. Surprisingly, the numbers are not what I expected. Cerebral palsy affects about 1 in 278 children. That number is alarming. We are that 1 in 278.

Raising a child with CP, or any disability, is difficult. Throw in a couple more children, like we have, and parenthood can be downright impossible. Lizzy is spoon fed, in diapers, legally blind, has a seizure disorder, walks with assistance, and is non-verbal. My husband and I learned very early on that we must be as persistent as possible with everything pertaining to Lizzy. From medicines to school Independent Education Programs (IEPs), to current treatments that will benefit her. Hyperbaric oxygen therapy was “the current treatment” where we hope and pray our persistence will pay off.

HBO Therapy

What is Hyperbaric Oxygen Therapy (HBOT)? As it was explained to me, HBOT is a medical treatment that enhances the body’s natural healing process by breathing in 100% oxygen while in a total body chamber. Oxygen delivered this way dissolves more easily in the damaged parts of the brain. The Federal Drug Administration has approved HBOT to treat decompression sickness, gangrene, brain abscess, and injuries in which tissues are not getting enough oxygen. But it has not yet approved HBOT to treat cerebral palsy.

However, proponents of HBOT say it has been shown useful in treating oxygen starvation of the brain, known as hypoxia. Since full blood circulation to specific areas of the brain may be impaired, increasing the rate at which oxygen diffuses into all of the body’s fluids increases the amount of oxygen carried to the hypoxic brain tissues. Saturating cerebrospinal fluid with oxygen holds the promise of repairing any recoverable brain tissue that is intact but not functioning normally.

The use of oxygen treatment in a chamber dates back to 1662, when an Englishman named Henshaw created the first chamber. Each hyperbaric oxygen treatment is called a “dive.” HBO treatments usually last from 60 to 90 minutes. Some children may have more than one session in a day. The total number of sessions will vary, but it’s common for treatment to start at 40 over the course of several weeks.

HBOT Studies

There have been many studies on HBOT and I was please to find that there are no known side effects other than ear discomfort from the rising pressure in the chamber during treatment.

Hyperbaric oxygen therapy improves the quality of life of the patient in many areas when standard medicine is not working, according to this 2007 study in the Journal of Physicians and Surgeons. Conditions such as head injuries and chronic fatigue have responded favorably to HBOT. In studies, as documented in The Lancet Journal, increased oxygen intake and tissue saturation has shown promising results for children with brain injuries:

• Improved breathing

• New blood vessel growth

• Decreased swelling and inflammation

• Deactivation of toxins

• Strengthened immune system

In January 2011, the Agency for Healthcare Research and Quality (AHRQ) released a review of HBOT studies that basically concluded that there needs to be more study done. At the same time, the review noted “Although none of the studies adequately measured caregiver burden, study participants often noted meaningful reductions in caregiver burden as an outcome of treatment.”

HBOT Chambers

There are basically two types of chambers: monoplace and multiplace.

Monoplace chambers hold a single person and the whole chamber is pressurized with 100% oxygen. Multiplace chambers are designed to hold several people at one time and oxygen is delivered through a mask or a hood. During hyperbaric oxygen therapy the patient sits or lies within a monoplace (single person) or multiplace (multiple person) chamber, as the pressure is slowly increased to between 1.4 and 3 times normal atmospheric pressure, depending on the condition being treated. Oxygen is pumped into the chamber and accumulates at higher concentrations due to the increased pressure. Both the pressurization and increased concentrations allow the oxygen to dissolve more readily in the blood, lymphatic fluid, and the cerebrospinal fluid, which nourish the brain and spinal cord.

Cost

Fees for hyperbaric oxygen therapy can range from $150 to $1,000 or more per treatment, depending on the type of treatment center, physician consultation fees, and other factors. When I called around, I found that you could receive between 25-40 treatments in a “cycle.”  A cycle can cost from $5,000.00-6,500.00.

Medicare, Medicaid, and private insurers generally reimburse for the treatment of Federal Drug Administration-cleared indications and occasionally reimburse for the treatment of off-label or alternative indications. HBOT is not considered an accepted treatment for CP, so it is off-label.Reimbursement rates and criteria may vary widely by insurance carrier and by state or region.

That said, however, an on-line organization called MUMS Parent-to-Parent Network has reported success at getting some states to reimburse for this therapy. The MUMS website contains information about language within Medicaid laws that will support this reimbursement. According to the site, the language is found within the Omnibus Budget Reconciliation Act of 1989 in the EPSDT statute. (EPSDT stands for Early, Periodic, Screening, Diagnostic, and Treatment services.) The most important part of this document states:

Other Necessary Health Care – States must provide other necessary health care, diagnosis services, treatment, and other measure described in section 1905(a) of the Act to correct or ameliorate defects, and physical and mental illnesses and conditions discovered by the screening services.

The group says this passage has been used to win HBOT reimbursement in Missouri, North Carolina, Virginia, and West Virginia. In addition, MUM said that “Once they’ve been reminded of Paragraph 5 of the EPSD…Arkansas, Arizona, California, Hawaii, Kansas, Maine, Maryland, Michigan, Minnesota, Nevada, New York, Wisconsin, and Wyoming have all indicated they could reimburse HBOT should a Medicaid recipient in their states request it.”

Finding a Clinic

When I started the initial process of finding clinics or hospitals that did this treatment, I used the Internet. I wrote down about seven places. Some were out of state, which meant that we would have a long car ride or a short flight. The places that were out of state were only one or two states away. However, Lizzy does not do very well on long car rides and we have yet to take her on a plane.

Another issue that we might encounter is that Lizzy might be claustrophobic. We have no idea of what this may mean for treatments until we get into the chamber. She also doesn’t like anything touching her head, so a hood or mask might be a problem. We may have to accept the fact, going into this, that she may not be able to handle the treatment.

Each place I called I asked the following questions:

• How long have you been doing these treatments?

• Do you treat children with CP?

• Is it safe?

• Are there any side effects?

• What type of chamber?

• Can I be in there with her?

• Can she listen to her music while she is in there?

• How long are the treatments?

• How many treatments are included?

• How many treatments in one day?

• Can we go home for the weekend then come back?

• How often can we come back for another round of treatments?

Our Journey Begins

I was told that she would need a prescription for her pediatrician stating that she could receive oxygen treatments. Our pediatrician is very understanding and encouraging when we request something for Lizzy. She said she was very interested and would do what she could for us.

Our funding will come from our daughter’s trust, which we received from a jury award after suing our doctor and hospital for medical error, which is a whole other story. At the time, we had no idea what we would be facing.

Lizzy will begin her treatments this summer. We are so excited about them and are optimistic that she will benefit from them. When I heard my friend at church describe her son’s improvements, I knew that this was what we had been waiting for. It was not what we had prayed for or dreamed of. It was the hope that we had wanted to feel again.

Other Resources for Information

There are numerous resources on the Internet for you to read about HBOT. There is also an interesting video that was recorded in 2004 after a young man named Curt Allen, Jr. was involved in a serious car accident that left him in a vegetative state confined to a wheelchair. This was the video that made us move forward with getting these treatments for our daughter.

http://www.youtube.com/watch?v=nbFs9NN__Mk

http://hyperbariclink.com/

http://www.hbot.com/

http://www.cerebralpalsy.org/treatments/oxygen-therapy/

http://www.patientsmedical.com/treatmentoptions/hyperbaricoxygentherapy/cerebralpalsy.aspx

http://www.abin-pa.org/presentations/Medicaid_law_for_children.pdf