FRAGILE X: What It Is and How to Help a Child With This Condition

FRAGILE X

FRAGILE X: What It Is and How to Help a Child With This Condition

What is fragile X syndrome

Fragile X Syndrome is the most common form of inherited intellectual disability. If you are not sure what this means, it’s a genetic disorder that can cause mild to moderate learning disabilities and behavioral problems, often including autism. It also causes physical features like large ears and long fingers. Girls who have fragile x syndrome may be at risk for premature ovarian failure (POF).

Do you know someone who has a child with fragile X syndrome? If so, this blog post is for you. In it, we will discuss what fragile X is and how to help a child with this condition.

Signs of fragile X

signs and Symptoms of fragile x include:

  •   Behavior problems that begin before age six. This includes learning disabilities, cognitive impairment and autism spectrum disorders.
  •   “play” or repetitive behaviors such as hand flapping often start between ages two to four years old when a child already has language skills. These types of behavior are not seen in children with other developmental conditions at this age.
  •   Delays in motor skills such as walking and running.
  •   ”grunting ” when breathing or grunting during sleep, especially if these behaviors are ongoing for several months starting around preschool age. This may be the only sign of fragile x syndrome at this time. 
  •   Inability to control body movements like head nodding, body rocking, arm flapping or other unusual movements (tics), starting around the preschool years.
  •   problems with fine and gross motor skills such as holding a pencil or using utensils to eat. These may be signs of fragile x syndrome in children over age five who do not meet criteria for autism spectrum disorders by this time.
  •   frequent falls during childhood.
  •   “staring into space” or “spacing out.” This may be the only sign of fragile x syndrome at this time, especially if it begins in late childhood after age five years old. 

Fragile X Syndrome can begin before birth but not all children with Fragile X show signs of the condition at birth.

Treatments and how to help a child with this condition

There is no cure for fragile X syndrome. However, there are many treatments and services to help children with this condition: 

  1.   Early intervention programs such as speech therapy and physical therapy can improve some behaviors associated with autism spectrum disorders or other developmental disabilities that often coexist with Fragile X Syndrome including cognitive impairment.
  2.   “behavioral approaches” such as Applied Behavioral Analysis can help reduce behavior problems in children with Fragile X Syndrome.
  3.   “medications” such as antipsychotic medications, ADHD medications or other anxiety/mood modifying medications may improve some behaviors associated with fragile x syndrome and should be prescribed by a child’s doctor. These types of medication are generally considered safe for use in children with this Syndrome.
  4.   In some cases, “behavioral treatments” or medications can make living easier for the child and family. And many people with this condition live into adulthood, so they may also need supportive services as adults to help them work and function in society. 
  5.   “social stories” can help children with fragile x syndrome learn to better understand social situations and how to behave appropriately in these types of settings.
  6.   -“parent coaching” can help parents better cope with the demands of caring for a child with Fragile X Syndrome, especially if they have other small children at home or may be dealing with stress from extended family members who do not understand fragile x syndrome.
  7.   “peer support groups” can help parents and other family members learn from each other how to cope with their child’s condition and provide emotional support, in addition to learning more about the disorder itself through these types of gatherings. 
  8.   Career counseling or career exploration services for children who grow into adulthood may be helpful to help them make decisions about their future career goals.
  9.   “training” (cognitive training) programs for adults with fragile x syndrome may be helpful in some cases where the person is working or looking for work and needs additional tools to understand how they think, learn new problem solving strategies and improve memory functions. 

A diagnosis of Fragile X syndrome does not mean a child should be excluded from school.

Is Fragile X inherited from mother or father?

Fragile X syndrome is a genetic disorder. This means it’s passed from parent to child through genes, which are pieces of body cells that contain information about who we are and what we look like.

Visualize this: Genes can be thought of as puzzle pieces made up of four parts or bases called nucleotides—adenine cytosine, guanine and thymine. Each parent contributes one half of the puzzle pieces to their child at conception (birth).

If there’s a change in just one piece out of the four on any one side—either from an extra base or missing part—it can cause fragile x syndrome. This usually happens on the X chromosome, the female sex chromosome.

People with fragile X syndrome have one normal X chromosome and an additional “fragile”X which is passed down from their mother or father (who has the same trait). The extra piece of genetic information causes some parts of body cells to not work properly or at all.

Child With This Condition

This usually happens on the X chromosome, the female sex chromosome.

People with fragile X syndrome have one normal X chromosome and an additional “fragile”X which is passed down from their mother or father (who has the same trait). The extra piece of genetic information causes some parts of body cells to not work properly or at all.

A mother who has Fragile X has a 50 percent chance of passing the mutant gene to each of her offspring.

If a woman who has the Fragile X gene is pregnant, her health care provider may suggest that she have an amniocentesis or chorionic villus sampling (CVS), both of which are tests to diagnose genetic conditions in a developing baby.

“Prenatal testing” can help parents prepare for their child’s birth and, in some cases, help parents learn about treatment options that may improve their child’s condition.

Is Fragile X mental retardation?

The Fragile X (FRAXA) syndrome is the most common form of hereditary mental retardation found in people.

Fragile X

  •   “mental retardation” is the term doctors use to describe people with below-average intelligence. It’s not caused by mental illness, injury or anything that happens during childhood development.
  •   “intellectual disability” (or “developmental delay”) refers to low IQ in which there are differences when compared to other members of society at an average age of 18 years.

Why is it important to know about this disorder and how you can help someone who has it or may be at risk for it in the future?

It’s important to know about fragile x syndrome because it’s the most common inherited cause of autism-like features, with an incidence rate at birth around one in 2000.  If you think someone may be suffering from this disorder or are on the autistic spectrum due to other conditions like Asperger’s Syndrome, please contact your doctor for further testing and diagnosis. There are many treatments available that can help improve their quality of life while also providing them with a brighter future.

Leave a Reply

Your email address will not be published. Required fields are marked *