Child Health & Safety News 10/9: Sextortion -Parents Need To Know

twitter thumbIn this week’s Child Health News: How ‘Sesame Street’ is helping kids learn to cope with trauma abcn.ws/2fYmZ0x

Welcome to Pediatric Safety’s weekly “Child Health & Safety News Roundup”- a recap of the past week’s child health and safety news headlines from around the world. Each day we use social media to communicate relevant and timely health and safety information to the parents, medical professionals and caregivers who follow us. Occasionally we overlook something, but overall we think we’re doing a pretty good job of keeping you informed. Still, quite a bit happens every day – so to make sure you don’t miss anything, we offer you a recap of this week’s top 15 events & stories.

  • Daan Utsav: Bringing Quality Healthcare To Underprivileged Children bit.ly/2hXQkJ0 2017-10-08
  • Does a Parent’s Age Have an Effect on Child Development? bit.ly/2yvh8ax 2017-10-08
  • 85% of Parents Are Giving Time-Outs Wrong bit.ly/2xoaoLH 2017-10-08
  • A growing backlash among young people disillusioned with the negative side of tech, such as online abuse & fake news bit.ly/2xkEYWg 2017-10-07
  • 3 ways to boost your child’s health through their gut bit.ly/2g0Tpr7 promoting healthy gut bacteria that can last a lifetime 2017-10-06
  • For Children With Severe Anxiety, Drugs Plus Therapy Help Best n.pr/2xdDVHJ 2017-10-06

PedSafe Child Health & Safety News Headline of the Week:
Why Every Parent Needs to Know About Sextortion thebea.st/2y1e2YW
it’s the fastest growing crime against kids on the internet!

  • West VA senators back reauthorizing the 20 yr old CHIP (childrens health insur plan) which expired this month bit.ly/2yI0cdd 2017-10-06
  • Did You Know..Every 2 weeks a child dies from a “tipover”? – Thurs Time Capsule 09/11 bit.ly/2x1Lkqe 2017-10-05
  • 9 million kids get health insurance under CHIP. Congress just let it expire. wapo.st/2xQBacw 2017-10-04
  • Quarter of young people admit to bullying someone online bit.ly/2xf2e3h 2017-10-04
  • Rett Syndrome: The Little Girl’s Disease Nobody Knows zpr.io/n6Y2H 2017-10-04
  • Page Turners for Grade Schoolers bit.ly/2xOQbLZ ..books that are “safe” for young readers not quite ready for mature content 2017-10-03
  • Women’s Choice Award® Announces Best Children’s Hospitals for 2018Awards to recognize excellence in pediatric care read.bi/2xUqUl8 2017-10-03
  • Feds push flu shots; 105 US children died from the flu last year detne.ws/2xEjlQ3 2017-10-02
  • An ADHD Dog Trainer Shows Special Kids How To Use Calm Energy zpr.io/n6P5E 2017-10-02

Sensory Friendly Screening: Blade Runner 2049 Tomorrow at AMC

AMC Entertainment (AMC) has expanded their Sensory Friendly Films program in partnership with the Autism Society. This Tuesday evening, families affected by autism or other special needs have the opportunity to view a sensory friendly screening of Blade Runner 2049, a film that may appeal to older audiences on the autism spectrum.

As always, the movie auditoriums will have their lights turned up and the sound turned down. Families will be able to bring in snacks to match their child’s dietary needs (i.e. gluten-free, casein-free, etc.), there are no advertisements or previews before the movie and it’s totally acceptable to get up and dance, walk, shout, talk to each other…and even sing – in other words, AMC’s “Silence is Golden®” policy will not be enforced during movie screenings unless the safety of the audience is questioned.

Does it make a difference? Absolutely! Imagine …no need to shhhhh your child. No angry stares from other movie goers. Many parents think twice before bringing a child to a movie theater. Add to that your child’s special needs and it can easily become cause for parental panic. But on this one day a month, for this one screening, everyone is there to relax and have a good time, everyone expects to be surrounded by kids – with and without special needs – and the movie theater policy becomes “Tolerance is Golden“.

AMC and the Autism Society will be showing Blade Runner 2049, sensory friendly tomorrow, Tuesday, October 10th at 7pm (local time). Tickets are $4 to $6 depending on the location. To find a theatre near you, here is a list of AMC theatres nationwide participating in this fabulous program (note: to access full list, please scroll to the bottom of the page).

Coming in October: My Little Pony: The Movie (Sat 10/14); Geostorm (Tues 10/24); My Little Pony: The Movie (Sat 10/28)

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Editor’s note: Although Blade Runner 2049 has been chosen by AMC and the Autism Society for a Tuesday Sensory Friendly screening, we do want parents to know that it is rated R by the Motion Picture Association of America for violence, some sexuality, nudity and language. As always, please check the IMDB Parents Guide for a more detailed description of this film to determine if it is right for you and your family.

Rett Syndrome: The Little Girl’s Disease Nobody Knows

Rett syndrome is a rare genetic disorder that affects brain development, resulting in severe mental and physical disability.

It is estimated to affect about 1 in 12,000 girls born each year and is only rarely seen in males.

This page covers:

Signs and symptoms

Some children with Rett syndrome are affected more severely than others. Also, the age at which symptoms first appear varies from child to child.

A child with Rett syndrome may not have every symptom listed below, and their symptoms can change as they get older.

Rett syndrome is described in four stages, although symptoms will often overlap between each stage. The main features of each stage are described below.

Stage One: Early Signs

At first, the child will appear to develop and grow normally for at least six months, although (especially with hindsight) there may be subtle signs of Rett syndrome before the child is recognized as having a problem.

Stage one is sometimes described as ‘stagnation’ because the child’s development slows down or stops altogether. Symptoms include:

  • low muscle tone (hypotonia)
  • difficulty feeding
  • unusual, repetitive hand movements or jerky limb movements
  • delay with development of speech
  • mobility problems, such as problems sitting, crawling and walking
  • lack of interest in toys

These symptoms typically begin during the period from six to 18 months of life and often last for several months, although they can persist for a year or more.

Stage one can often go unnoticed by the child’s parents and by healthcare professionals because the changes occur gradually and may be subtle.

Stage Two: Regression

During stage two, known as ‘regression’ or the ‘rapid destructive stage’, the child starts to lose some of their abilities. This stage usually begins between the ages of one and four and may last for any time from two months to more than two years.

The child will gradually or suddenly start to develop severe problems with communication and language, memory, hand use, mobility, co-ordination and other brain functions. Some of the characteristics and behaviours are similar to those of autism spectrum disorder.

Signs at this stage include:

  • loss of the ability to use the hands purposefully – repetitive hand movements are often difficult to control and include wringing, washing, clapping or tapping
  • periods of distress, irritability and sometimes screaming for no obvious reason
  • social withdrawal – a loss of interest in people and avoidance of eye contact
  • unsteadiness and awkwardness when walking
  • problems sleeping
  • slowing of head growth
  • difficulty eating, chewing or swallowing, and sometimes constipation that may cause tummy aches

Later on during regression, the child may experience periods of rapid breathing (hyperventilation) or slow breathing, including breath-holding. They may also swallow air which can lead to abdominal bloating.

Stage Three: Plateau

Stage three of Rett syndrome can begin as early as two years of age or as late as 10 years of age. It often lasts for many years, with many girls remaining in this stage for most of their lives.

During stage three, some of the problems that occurred at stage two may get better – for example, there may be improvements in behaviour, with less irritability and crying.

The child may become more interested in people and their surroundings, and there may be improvements in alertness, attention span and communication. Their walking ability may also improve (or they may learn to walk, if they were previously unable to do so).

On the downside, problems that can arise during stage three include:

  • seizures, which become more common
  • irregular breathing patterns may get worse – for example, shallow breathing followed by rapid, deep breathing, or breath holding
  • teeth grinding
  • some children may develop heart rhythm abnormalities (arrhythmias)

Gaining and maintaining weight can also be difficult to achieve.

Stage Four: Deterioration In Movement

Stage four can last for years or even decades. The main symptoms at this stage are:

  • development of a spinal curve (the spine bending to the left or right side), known as scoliosis
  • muscle weakness and spasticity (abnormal stiffness, particularly in the legs)
  • losing the ability to walk

Communication, language skills and brain function don’t tend to get any worse during stage four. The repetitive hand movements may decrease and eye gaze usually improves.

Seizures also usually become less of a problem during adolescence and early adult life, although they will often be a lifelong problem to manage.

What causes Rett syndrome?

Almost all cases of Rett syndrome are caused by a mutation (a change in the DNA) in the MECP2 gene, which is found on the X chromosome (one of the sex chromosomes).

The MECP2 gene contains instructions for producing a particular protein (MeCP2), which is needed for brain development. The gene abnormality prevents nerve cells in the brain from working properly.

There’s usually no family history of Rett syndrome, which means it isn’t passed on from one generation to the next. Almost all cases (over 99%) are spontaneous, with the mutation occurring randomly. This is known as a ‘de novo’ mutation.

Diagnosing Rett syndrome

Rett syndrome is usually diagnosed based on your child’s symptoms, and by ruling out other more common disorders.

A diagnosis of Rett syndrome may not be made for a number of years because the syndrome is so rare and symptoms don’t tend to appear until a child is between six and 18 months old.

A genetic blood test can be used to identify the genetic mutation responsible for Rett syndrome (although it isn’t found in every child with the syndrome). If a change is found in the MECP2 gene, it can help confirm the diagnosis, but failing to find it doesn’t necessarily rule out the syndrome.

Read more about genetic testing.

Managing Rett syndrome

There’s no cure for Rett syndrome, so treatment focuses on managing the symptoms.

As a parent caring for a child with the syndrome, it’s likely you’ll need help and support from a wide range of healthcare professionals.

Your child may benefit from some of the following treatments and aids:

  • speech and language therapy, picture boards, eye gaze technology and other visual aids to help with communication
  • medication for breathing and mobility problems, and anti-epileptic medicine to control seizures
  • physiotherapy, attention to mobility, careful attention to your child’s sitting posture (to minimize the chances of scoliosis developing), and frequent changes in posture
  • if scoliosis does become established, a back brace and sometimes spinal surgery may be used to prevent the spine curving further (read more about treating scoliosis)
  • a high-calorie diet to help maintain sufficient weight, with the use of a feeding tube and other feeding aids if necessary
  • occupational therapy to help develop the skills needed for dressing, feeding and other daily activities
  • an ankle-foot orthosis (lower leg brace) to help them walk independently
  • a hand splint to help control hand movements, if these are severe (they’re mainly used for limited periods to prevent self-injury or to encourage activities with the other hand)
  • beta-blocker medication or a pacemaker to control their heart rhythm

Therapeutic horse riding, swimming, hydrotherapy and music therapy have also been reported to be beneficial. Ask your healthcare team where you can access these therapies.

Read more about caring for a disabled child and care equipment, aids and adaptations.

Outlook

Although some people with Rett syndrome may retain a degree of hand control, walking ability and communication skills, most will be dependent on 24-hour care throughout their lives.

Many people with Rett syndrome reach adulthood, and those who are less severely affected can live into old age. However, some people die at a fairly young age as a result of complications, such as heart rhythm abnormalities, pneumonia and epilepsy.

Advice for carers (*caregivers)

Caring for a child with Rett syndrome is mentally and physically challenging. Most carers will need social and psychological support.

Your guide to care and support** (for our UK readers) provides lots of information and advice about how you can take time to look after yourself, including:

You may also find it useful to contact a support group, such as Rett UK** for information and advice about looking after a child with the syndrome.

National Congenital Anomaly and Rare Diseases Registration Service

If your child has Rett syndrome, your clinical team will pass information about him or her on to the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS).**

This helps scientists look for better ways to treat and prevent the syndrome. You can opt out of the register at any time.

Editor’s Note: *clarification provided for our US readers.

OCTOBER IS RETT SYNDROME AWARENESS MONTH!

** Resources in the United States

For more information and to donate to Rett Syndrome research:

Meet Miss Maddie! Madelyne Rae was diagnosed with Rett Syndrome on January 17, 2017. She was 27 months old at that time. Since her diagnosis Maddie has had several hospital stays for seizures, metabolic acidosis and for feeding tube placement. Maddie recently celebrated her third birthday! She’s learning to communicate using an eye-gaze, speech-generating device called a Tobii Dynavox. She stays active with her adaptive bicycle and goes to school full-time.

 

NHS Choices logo


From www.nhs.uk





Child Health & Safety News 10/2: Whole30 during Pregnancy?

twitter thumbIn this week’s Child Health News: Photo Of Mom’s Horrific Car Accident Goes Viral For Important Message: This is why you buckle in safely EVERY time oxygen.tv/2fBchZV

Welcome to Pediatric Safety’s weekly “Child Health & Safety News Roundup”- a recap of the past week’s child health and safety news headlines from around the world. Each day we use social media to communicate relevant and timely health and safety information to the parents, medical professionals and caregivers who follow us. Occasionally we overlook something, but overall we think we’re doing a pretty good job of keeping you informed. Still, quite a bit happens every day – so to make sure you don’t miss anything, we offer you a recap of this week’s top 15 events & stories.

  • What Is the Tango App and Is It Safe? bit.ly/2yBnlO9 2017-10-01
  • Some preventative tips during National SIDS Awareness Month bit.ly/2fBtlPp 2017-10-01
  • WHO recommends large-scale treatment for intestinal worms to improve children’s health and nutrition bit.ly/2fzDAnB 2017-10-01
  • Increased asthma in kids w/ families struggling financially sparks push to improve military kids’ health care on.mgmadv.com/2fAvHOE 2017-09-30

PedSafe Child Health & Safety News Headline of the Week:
Is it Safe to Whole30 During my Pregnancy? bit.ly/2fIAoqh
Note: Always check with your doctor

  • 14 Year old recognized for saving young child from drowning bit.ly/2xENA9K 2017-09-30
  • Pediatric Safety – Kids Who Care – Issue #1 bit.ly/2xLV631 2017-09-29
  • Keeping Your Family Safe from MRSA -Thurs Time Capsule 09/11 bit.ly/2f7U35C 2017-09-28
  • How to Raise Healthy Vegetarian and Vegan Children zpr.io/nnm3e 2017-09-27
  • Millions of kids in developing countries aren’t properly developing cognitive learning skills nyp.st/2fHQ4K5 2017-09-26
  • Concerns about ADHD – introduction and overview bit.ly/2xnWS9M2017-09-19
  • NY Times Opinion | California’s Sexual Assault Law Will Hurt Black Kids nyti.ms/2hp0fmY 2017-09-25
  • Kingsman: The Golden Circle is Sensory Friendly Tomorrow at AMC zpr.io/nnGQm 2017-09-25
  • 2017 Parent Empathy Pledge: Focus on the “Other” Report Card zpr.io/nnG5W 2017-09-25