Archive for the ‘American Academy of Pediatrics’ Category

Autism and Wandering – a constant struggle

Wednesday, August 3rd, 2011

I have written before in this space about special needs children, including children with autism. This week I want to turn my attention to one aspect of autism – wandering – and some of the ways parents and schools are trying to keep kids safe. Wandering is something I really had not heard of before, but I’ve since learned that it is a serious danger to children with autism or other cognitive deficits. It is also a major source of stress to parents who are constantly worried about their child wandering off.

All children have a tendency to wander away from their parents at times. When my daughter was two, I lost her at Sports Authority. I thought she was standing right next to me while I was looking at something, then I looked down and she was gone. After a few frantic minutes – and with the quick help of the store employees – we found her all the way on the opposite side of the store looking at balls. She was perfectly fine, but it was terrifying for me.

For reasons that are not well understood, children with Autism Spectrum Disorder (ASD) tend to wander more than non-autistic children. As reported by the Child Mind Institute and others, a recent study by the Interactive Autism Network has finally tried to quantify what has traditionally been more anecdotal evidence about wandering.

According to the responses from more than 800 parents, roughly 50 percent of children between the ages of 4 and 10 with an ASD wander at some point, four times more than their unaffected siblings. The behavior peaks at 4, almost four times higher than their unaffected siblings, but almost 30 percent of kids with an ASD between the ages of 7 and 10 are still eloping, eight times more than their unaffected brothers and sisters.

Autistic children seem to wander for two basic reasons. One is to find something they like, such as their favorite pond or playground; and one is to get away from something they don’t like such as a stressful school environment. It’s not really running away, at least as that term is usually used to describe a child who decides to leave home because of some real or perceived injustice at home. A majority of parents in the study described their child as happy and focused when they wandered off. It is usually a matter of the child being drawn to something that he or she likes. One child referenced in the Child Mind story had a fascination with exit signs. One day at school, the boy wandered off through the woods toward the highway to find his favorite exit sign. Thankfully, a good Samaritan picked-up the boy and returned him to where he belonged.

The danger for children is very real. While concrete statistics are difficult to come by, drowning seems to be the biggest danger (there are some who believe that autistic children are drawn to water). Children can also wander into traffic. Of course, when any small child wanders alone there is the risk of getting lost or being abducted. To further complicate matters, thirty-five percent of families in the study reported that their child is never or rarely able to communicate basic identifying information such as name, address and phone number. This obviously makes it harder for a wandering child to get back home. Even older or more high-functioning children may – due to their social anxiety – be reluctant to seek out help or cooperate with someone who is trying to intervene.

Wandering represents a challenge to schools because it can be very difficult to monitor a child all day long, especially during class changes and recess. The problem, however, also occurs at home. Wandering occurs not just during the day; night-time wandering is an especially big fear for parents of autistic children. Some children have been known to get up in the middle of the night, undo the deadbolt on the front door, and walk-off into the night. The terror of finding your child gone in the middle of the night is unimaginable. Some parents have installed deadbolts higher up on the doors, some have installed alarms that go off if the door is opened. Some parents have gone so far as to have their children wear tracking devices that send out a signal that can be pin-pointed. While all of these techniques can help, there are no sure-fire methods of preventing wandering. It is a constant worry for parents.

The autism community has taken action by getting the Center for Disease Control’s safety subcommittee to assign a specific medical code for wandering, which will be in conjunction with the diagnosis of ASD. By doing this, it is hoped that doctors will more readily recognize wandering as a legitimate diagnosis that they can address with the parents or other caregivers (the new code applies to adults with ASD as well). The American Academy of Pediatrics is also preparing a fact sheet to educate doctors on the topic so that they can better work with parents to try to reduce the incidence of wandering. The new code may also make it easier for parents to seek reimbursement from their insurance companies for alarms and tracking devices, and it may make it easier for parents to argue to their schools that a one-on-one monitor is needed as part of the child’s Individualized Education Plan (IEP). The new code takes effect in October 2011.

Lori McIlwain, Chairwoman of the National Autism Association, recently discussed how to deal with wandering:

The best overall strategy is a multi-tiered approach, which includes educating the child about safety and dangers using whatever means of communication works, including social stories, language and/or visual prompts. It’s also important that caregivers—and schools—work to understand what is causing, or contributing to, the wandering or bolting behaviors so that any triggers may be addressed or eliminated.

Have any of our readers had any experience with wandering? I’d like to hear your stories as to how you deal with it and how it affects your life.

Related Nash and Associates Links:

Dogs a Huge Help to Special Needs Kids

The Daily Struggle of Raising a Disabled Child

Many Parents Still Believe Vaccines Cause Autism

 

 

Photo courtesy of: Issueswithautism.com

New First-Of-Its-Kind Study: 70,000 Children Injured Annually by Medical Devices

Thursday, July 29th, 2010

A new first-time study of injuries suffered by children as a result of medical devices has produced some startling statistics. “More than 70,000 children and teens go to the emergency room each year for injuries and complications from medical devices,” according to an article in The Washington Post, which highlights a study just published by the American Academy of Pediatrics.

Although the study points out that only 6% of all of these injuries required hospitalization, the fact remains that there is still a very large number of children that suffer injuries due to medical devices.  Some injuries are due to malfunction and misuse, while others are from very dangerous events, such as “puncture wounds from hypodermic needles breaking off in the skin while injecting medicine or illegal drugs”. According to the The Washington Post article:

The most serious problems involved implanted devices such as brain shunts for kids with hydrocephalus (water on the brain); chest catheters for cancer patients receiving chemotherapy at home; and insulin pumps for diabetics. Infections and overdoses are among problems associated with these devices.

In addition, the article touches on a recent trend that has come with medical advances: home health care, for such treatments and procedures which previously required longer and more extensive hospital stays:

Dr. Steven Krug, head of emergency medicine at Chicago’s Children’s Memorial Hospital, said the study highlights a trade-off linked with medical advances that have enabled chronically ill children to be treated at home and live more normal lives.

Home care can be challenging for families; Krug says he has seen children brought in because catheters were damaged or became infected.

“Health care providers need to be aware of these kids and their devices and how to recognize or diagnose” related problems, Krug said.

All of this being said, the article suggests that the Food and Drug Administration may soon become more involved, due to the nature and extent of these injuries to children:

The researchers are working to determine how and why the injuries occurred and also are examining the prevalence in adults. Those efforts might result in FDA device warnings, depending on what they find, said study co-author, Dr. Brock Hefflin.

Hefflin and lead author Dr. Cunlin Wang work in the FDA’s Center for Devices and Radiological Health. They note there has been recent concern about medical device safety in children, particularly since many devices intended for adults are used in children.

We leave you with this conclusion, as stated by the American Academy of Pediatrics:

This study provides national estimates of pediatric medical device-associated adverse events resulting in emergency department visits and highlights the need to develop interventions to prevent pediatric device-related injuries.

Is this an adequate response?  What do you think?

Study Warns of Many Parents “Undertreating” their Kids for Pain

Tuesday, July 20th, 2010

USATODAY has recently posted an article on-line, regarding how prevalent the undertreatment of children is when it comes to follow-up medical care after an injury or surgery.

As more and more hospitals send children home fairly quickly after surgery – many within hours after an outpatient procedure – it falls on parents to monitor and control their child’s pain.  This can be frightening for some parents, confusing to others, or a combination of both.  As a result, many parents just flat-out refuse to give pain medication to their kids.  What percentage of parents don’t give adequate pain relief through medication to their children?

In a study of 261 children, 24% of parents gave either no medication or a single dose, even though 86% of parents reported that their child was in “significant pain” on the first day after surgery, according to the study of children ages 2 to 12 published in October in Pediatrics. Doctors typically advise parents to give pain relievers every four hours as needed.

What makes the issue of pain involving children even more challenging is that it is not always easy to tell whether a child is in pain or to what extent.  What are some of the signals that a child is in pain? Here’s some insight:

Recognizing and treating pain in children can be a challenge. Unlike adults, kids may not cry or complain when in pain, says Lisa Humphrey, Medical Director of the Pediatric Palliative Care Program at Rainbow Babies & Children’s Hospital in Cleveland. Instead, kids may show these symptoms:

• Refusing to eat or drink.
• Becoming quiet, withdrawn.
• Having trouble sleeping.
• Becoming fussy.
• Showing other changes in mood or behavior.

It is also suggested that doctors do more than just write a post-procedure prescription and then hand it to the child’s caregiver. Pediatrician Zeev Kain, Chairman of Anesthesiology at the University of California-Irvine, encourages doctors to take an active role in advising and guiding parents in the aftercare of their little ones:

“[D]octors give parents relatively little information about how to care for these young patients,” Kain says. “It’s not enough to hand parents a prescription,” he says. “Doctors and nurses need to make sure parents will actually give the medication.”

“Without such guidance, parents who are afraid of medication side effects often intentionally withhold medication,” he says.

Once a caregiver is educated and knows what to do and how to do it, then there is the issue of having the child actually take the medicine. What if they are fussy, don’t like the taste, or simply will not listen?  Dr. Humphrey provides one answer:

Parents also can request that children try a dose of medication before leaving the hospital, to make sure they are willing to swallow it.

Dr. Mark Brown, an ear, nose and throat specialist in Austin, provides another:

If children don’t like the taste, parents can ask pharmacists to create alcohol-free versions, which are more palatable, says Mark Brown, an ear, nose and throat surgeon in Austin. Many pharmacies are now willing to add a child’s favorite flavor, such as orange or grape.

So, the next time the doctor hands you that prescription for your little one, and your mind starts to race with questions about dependency, side effects, or issues involving how to administer the medication, there is one thing you can do before the doctor turns to leave to see the next patient: ask for help and guidance!