Fragile X Syndrome (FXS) is a condition that affects a child’s development, appearance, behavior, and general health. If you have a child with FXS, it’s important to increase your awareness about their condition to create a supportive environment for their individual needs. Thankfully, there are several therapies available to help ease symptoms and help them gain a range of skills. In this article, we’ll discuss what FXS is, common signs and symptoms, and available treatment options. Let’s dive in!
What Is ‘Fragile X Syndrome’?
Fragile X syndrome (FXS), also known as Martin-Bell Syndrome, is an inherited genetic disorder passed down from parents to children. It causes a range of intellectual and developmental disabilities, learning and behavioral challenges, physical characteristics, and co-occurring conditions. Comparatively, it affects more males than females, with around 1 in 7,000 males and about 1 and 11,000 females. Symptoms are also milder in females compared to males. It is also a chronic or lifelong condition.
What Causes Fragile X Syndrome?
The number one cause of FXS is hereditary. It is passed down from the parents to children through a defect in the “FMR1” gene. This gene produces a mutation on the X chromosome, which prevents it from producing a protein needed for the proper functioning of the nervous system. While it’s not entirely understood, the disruption of this protein causes FXS. However, not everyone with the mutated gene will have FXS symptoms. For example, females are less likely to have FXS because they have two copies of the X chromosome, whereas males have one X and one Y chromosome.
28 Fragile X Syndrome Signs and Symptoms
While each child with FXS is unique, here is a list of common signs and symptoms organized into four categories, cognitive, behavioral, physical, and associating conditions;
- Difficulties with fine motor skills
- Challenges with gross motor skills
- Language delay
- Difficulty making eye contact
- Problems with sensory stimulation
- Poor impulse control
- Obsessive-compulsive behaviors
- Difficulties understanding social cues
- Hand flapping
- Low muscle tone
- Long and narrow face
- Soft skin
- A pronounced forehead and chin
- Flat feet
- Double-jointed fingers
- A large jaw
- A high-arched roof in their mouth
- Prominent ears
- Crossed eyes
- Attention/deficit hyperactivity disorder
- Sleep, hearing, vision, and heart problems
While there is no single treatment for FXS, there are several therapies that doctors recommend.
7 Treatment Options for Fragile X Syndrome
1. Early intervention
Early intervention in children with fragile X syndrome is very important. It provides them the best start to developing a full range of skills because their brain is still forming. Therefore, meet with your doctor and discuss a treatment plan that best fits your child’s needs. The quicker they get treatment, the faster they will gain more opportunities for learning and acquiring skills.
3. Special education
Tailored school programs help children with FXS receive the most from their learning time. But since each child is different and displays unique symptoms, the education plan needs to be tailored to their specific needs and abilities. For example, some children have difficulties with abstracting skills and measuring and counting skills, whereas others may need help improving their visual memory. Overall, each child will benefit from a quieter and distraction-free environment. Indeed, many children with FXS become overwhelmed by large crowds, noises, and overstimulation.
4. Behavior therapy
Behavior therapy, like cognitive behavior therapy, helps children with FXS manage their feelings and other challenges, including generalized anxiety, ADHD, self-injury, social interaction difficulties, and aggression. For example, it’s common for children to experience aggression in response to impulsivity and overstimulated environments. But cognitive behavior therapy, helps the child understand their triggers, acknowledge how they’re feeling in response to them, and develop healthier coping mechanisms to manage their emotions.
5. Occupational therapy
Occupational therapy is another therapy that aims to help children with FXS acquire skills and experience fewer challenges. For example, through various skill-building tasks, children gain greater independence, learn how to carry out their routines and improve their oral and fine motor movement. Other examples include learning to provide sensory alterations to their environments, self-care skills like brushing their teeth and getting dressed and strengthening their writing abilities.
6. Improve their school life
Since students work best in distraction-free environments, teachers can improve their well-being by accommodating their student’s needs. For example, they can decrease overstimulation by making time for extra breaks, allowing them to wear noise-reduction headphones, dimming lights, and providing quiet areas. Students will also benefit from visual cues during instruction and learning the value of self-calming strategies like mindfulness, breathing techniques for anxiety and mediation to aid behavioral difficulties. Overrall, each change you make will help your students with FXS gain the most from their school experiences.
7. Improve their home life
As a parent, it can be incredibly challenging to learn how to care for your child. But like any child, it’s critical to understand their individual needs and make accommodations to improve their wellbeing. For example, keep their routine consistent – children with FXS struggle to adapt to continuous change. Secondly, attend their therapy sessions, ask questions, and be present. These sessions are opportunities to gain techniques that will help them cognitively, behaviorally, and emotionally. Lastly, depending on their unique needs, use simple language when providing instruction, use visual cues when possible, and create an environment beneficial for their sensory needs; headphones, dimmed lights, sound reduction, etc.
Above all, patience is key. You will experience several challenges, but every day is an opportunity for growth. Therefore, as each day progresses, you will become more equipped to care for your child with fragile X syndrome. And most importantly, shower them with continued love, compassion, and kindness. Every ounce of love you provide aids their well-being in countless ways.
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