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Month: December 2022

Osteogenesis Imperfecta (OI): What it Means for Children and Their Families

By‎: TELETONUSA /

Osteogenesis Imperfecta (OI) is a genetic disorder that impacts thousands of families across the world. Also known as brittle bone disease, OI is characterized by bones that do not form normally or easily fracture, even with impact as minor as a sneeze.

OI is a lifelong disease, and a diagnosis of OI can be life-altering, both for the patient and their loved ones. Let’s take a look at what OI is, what it looks like to live with OI, and how OI impacts families.

What is OI and how is it caused?

OI is a genetic disorder that results in soft bones. Most children with OI have a defect in one of the genes passed from their parents. The mutations that cause OI are related to the genes that create and manage collagen.

Collagen, also known as the body’s building block, is an essential protein that the body uses to strengthen bones and build connective tissues such as tendons, ligaments, and the whites of the eyes. In patients with OI, the body either creates collagen that doesn’t function properly or too little collagen, leading to brittle bones.

How common is OI?

Approximately 1 out of every 20,000 people are diagnosed with OI. However, there are 15 different types, ranging from mild to severe.

The most common type of OI is Type I, which accounts for about half of all OI cases. Patients with Type I have the mildest symptoms of OI and typically experience less than several dozen fractures in their lifetime.

Type II OI is the most severe form of OI and occurs in approximately 10% of all OI cases. For patients with Type II OI, it is rare to live more than a few weeks after birth. Type III occurs in about 30% of all OI cases and is severe, but it is possible for the patient to have an average lifespan. All other types of OI occur extremely rarely and vary in severity.

In the United States alone, between 25,000 and 50,000 people are estimated to have OI. It occurs equally across racial groups and genders.

What are the symptoms of OI?

Symptoms of OI (and their severity) depend on the type of OI the patient has. Some of the most common symptoms include:

  • Bones that break or fracture easily
  • Blue or gray tint to the whites of the eyes (also known as sclera)
  • Brittle teeth
  • Skin that bruises easily
  • Hearing loss over time
  • Spinal curvature

What is it like to live with OI?

Although there is no cure for OI, there are various forms of treatment available to manage symptoms, including frequent exercise, water therapy, medicine to improve bone strength, and implementing a healthy diet.

With consistent treatment, therapy, and good nutrition, many people with OI live long, productive and healthy lives. However, people with OI are likely to experience hundreds of bone fractures in their lifetime. Leg, arm, ankle and wrist braces may be needed to support weak bones. Extra dental work will likely be required, as many patients with OI have brittle teeth.

How does OI impact families? 

OI impacts thousands of families across the United States, and for most families, having a child with OI involves major changes to their way of life. This often includes frequent clinical visits and therapy appointments, learning how to become proper caregivers, and altering family recreation to activities that are safe for the child with OI.

As it may be difficult to find safe options for daycare, many parents choose to become full-time caregivers. Families often choose to relocate to homes that are safe for their child with OI, such as one level houses or homes that have low light switches.

Learning how to properly support and care for a child with OI can be challenging, but it is more than possible. At CRIT, we’re here to support you and your family every step of the way.

References

Pediatric Traumatic Brain Injuries: Frequency, Causes, and Side Effects

By‎: TELETONUSA /

Traumatic brain injuries, also known as TBI, are a leading cause of death and disability among children. Side effects of TBI can include lifelong cognitive challenges in school, relationships, and social settings. Understanding the leading causes and treatment of TBI is important for preventing accidents and knowing how to respond if they happen.

What is a traumatic brain injury?

TBI is a form of brain injury caused by a sudden impact on the brain that results in permanent, lasting damage. Damage caused by TBI can either be localized or spread throughout the brain. In children, TBI is considered a chronic condition. As the child’s brain is still developing, both the side effects and the injury’s extent will manifest over time.

How common are pediatric traumatic brain injuries?

Traumatic brain injuries are more prevalent than any other disease and occur across all races and genders. According to the CDC, the leading cause of death and disability in children ages 0-4 and 15-19 is a traumatic brain injury. Studies show an estimated incidence of pediatric TBI of 691 per 100,000 children.

Types of TBI

TBI can be classified into three types: mild, moderate, and severe. The type of TBI a patient is diagnosed with is based on three factors:

  • How long (and if) the child experienced a loss of consciousness
  • Whether the child experienced post-traumatic amnesia and for how long
  • How confused the child was following the injury

TBI can be caused by either a primary or secondary injury. Primary injuries occur at the time of impact and include fractures, blows to the head, concussions, and brain bleeds. Secondary injuries, however, occur as complications of the initial insult. Secondary injury includes lack of sufficient oxygen or blood flow, brain swelling, and blood pressure change leading to brain damage. 

What causes traumatic brain injuries in children?

There are various causes of TBI, the frequency of which vary by age.

  • Falling: According to the CDC, falling accounts for 50.2% of TBI in children between 0 and 14. Falls among children often occur on stairs, off a bed, or in the bath.
  • Near-drowning: Children can also experience TBI from near-drowning. An estimated 5,000 children are hospitalized yearly from near-drowning, with 15% experiencing severe, lifelong loss of brain function, damaging their ability to think and remember.
  • Choking: Choking is another cause of pediatric TBI. For children aged three and under, choking is a leading cause of death and injury and can lead to brain damage. A child whose brain is deprived of oxygen for longer than 4-6 minutes can sustain lifelong cognitive disabilities.

Side effects of TBI

Children diagnosed with TBI may experience a range of outcomes and symptoms. Here are a few of the most common side effects:

  • Decreased awareness or responsiveness: Children with severe TBI may enter a coma or vegetative state, have decreased self-awareness, or experience brain death (an irreversible condition characterized by no detectable brain activity).
  • Headaches: Chronic headaches lasting several months are common among patients with pediatric TBI.
  • Infections: If the tissue around the brain has been damaged, patients may experience infections such as meningitis.
  • Fluid buildup: Fluid buildup can cause swelling and pressure in the brain.
  • Nerve damage: Nerve damage can result in facial paralysis, hearing loss, vision problems, and dizziness.

Treatment of Pediatric TBI

Unfortunately, the initial trauma a patient experiences from a traumatic brain injury is usually irreversible. However, prompt medical care can help prevent further damage from occurring. For this reason, it’s vital to bring a patient with TBI to the hospital as quickly as possible.

Medical providers will monitor the patient’s blood flow and help ensure the patient receives enough oxygen and maintains healthy blood pressure.

Children who have experienced neurological disabilities from TBI can also benefit from rehabilitation (rehab), such as physical and occupational therapy and psychiatric care. Rehab care can help children who have experienced TBI adapt to physical changes in their bodies and improve function at home and in social settings.

References

From Your CRIT Counselor: Be Yourself

By‎: TELETONUSA /

“Be yourself because an original is worth more than a copy.“

Be yourself. Be authentic. We hear that a lot nowadays. However, it is hard to be yourself when you do not know who you are. We know what we are. We are sons/daughters, husbands/wives/partners, employees, employers, co-workers, parents, siblings, aunts, uncles, grandparents, friends, caregivers, and so on. 

We spend so much time trying to impress others. We change our appearance, behaviors, thoughts, and feelings for others. We want to fit in and feel accepted. What is most important is that we accept ourselves. The longest relationship you will ever have is with yourself. I encourage you to work on that relationship. Find out who you are that includes your likes and dislikes, qualities, and areas of improvement. I have seen how other relationships and situations improve when we are comfortable, accepting, and loving of ourselves.

The original is worth more because it is unique. It is the first of its kind. You are unique, and there is no one like you. No one has seen or experienced what you have. Be comfortable being yourself.

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