Archive for the ‘children's health research’ 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

Asthma News: Parents Underestimate Children’s Symptoms, Placebos Effective in Improving Patient’s Subjective Improvement but Not Objective Health

Monday, July 25th, 2011

image from consumerreports.org

A couple of months ago, one of my colleagues, Jon Stefanuca, wrote a post for Eye Opener entitled Four Tips For Getting the Medical Care You Need When You Are Having An Asthma Problem. In that article, he explained the importance of patients proactively knowing and explaining their asthma symptoms to healthcare providers. He focused on some of the key features of asthma and the unique symptoms that each individual may experience. If you have not already read that article, I highly recommend it as a great way to become a better advocate for yourself or someone in your life that suffers from asthma.

Over the last few months, I have been thinking about Jon’s advice in relation to some work I have been doing. It makes good sense and hopefully will help people receive better care when they are having exacerbations of their asthma. However, I was disheartened to read a recent article from Reuters about how frequently parents underestimate their children’s asthma symptoms.

Parents Underestimate Their Children’s Asthma Symptoms

I am always a little leery of studies that are drugmaker-funded, particularly when the study suggests that perhaps more medications are needed to combat a problem. However, taken at face value, this is a pretty frightening idea given how many children now suffer from asthma and how serious a condition it can be for those children and families. The article points to a disconnect between the parents’ description of their child’s asthma and whether the asthma was actually being adequately treated:

While more than seven out of every 10 parents interviewed described their child’s asthma as “mild” or “intermittent,” the disease was adequately treated in only six in 10 kids.

A doctor who was not involved in the study explained it this way:

“Parents are only aware of asthma when the child is more severely ill,” Dr. Gordon Bloomberg…

“Physicians cannot just ask the parent ‘how is your child doing?’ The physician will get a global answer that doesn’t reflect the child’s quality of life,” said Bloomberg, of Washington University in St. Louis.

Poor treatment may influence asthmatic children’s quality of life, as well as that of their families.

In the survey, more than four in 10 parents reported missing work because of their child’s asthma, and similar numbers of parents regularly lost sleep for the same reason.

Children are Better Reporters Than Their Parents of Symptoms

Interestingly, “[t]he study also found children tended to be better than their parents at determining how well their asthma was being treated.” So, clearly, doctors must take the time to discuss the asthma symptoms and treatments not only with parents but also in a sensitive and appropriate way with the children patients themselves in order to receive a better indication of the disease status. The doctors interviewed for the Reuter’s article had different opinions on what this means for asthma treatment:

According to a new report, this suggests parents need more education about asthma medications.

But one expert said more medication is not the be-all and end-all for children.

“The idea of total control…is not where we should be putting our energy,” Dr. Barbara Yawn from Olmstead Medical Center in Rochester, Minnesota, told Reuters Health in an email.

Instead of just giving children with stubborn breathing problems more medication, she said better communication is needed to determine how children’s lives are affected, and what it will take to prevent their symptoms.

New Study Shows Receiving Treatment, Even with Placebo, Important for Asthma Patients – But Does not Improve Objective Health

image from 123rf.com

In another recent study, reported in the New England Journal of Medicine, researchers looked at how asthma patients responded to a medication (bronchodilator), two different types of placebos (fake inhaler or fake acupuncture), or no intervention at all. An objective measure was taken of the patient’s ability to exhale after each intervention (or lack of intervention) and the patient’s own rating of improvement was noted. What was so interesting about this study were the different outcomes between the objective (spirometry) and subjective (patient’s self-reporting) measurements of improvement.

The bronchodilator provided markedly better objective treatment over the placebos or no treatment – a 20% improvement rather than 7% for the placebos or no treatment. However, the subjective measure of improvement found that patients were almost the same, 45-50% improvement, whether the patients received the actual bronchodilator (50%), the placebo inhaler (45%) or the sham acupuncture (46%).  All of which were higher than the 21% improvement reported by those who did not receive intervention.

An article about the study in medicalnewstoday.com explains the outcome this way:

Now a study of asthma patients examining the impact of two different placebo treatments versus standard medical treatment with an albuterol bronchodilator has reached two important conclusions: while placebos had no effect on lung function (one of the key objective measures that physicians depend on in treating asthma patients) when it came to patient-reported outcomes, placebos were equally as effective as albuterol in helping to relieve patients’ discomfort and their self-described asthma symptoms.

The study’s senior author, Ted Kaptchuk, Director of the Program in Placebo Studies at Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School explained it this way in the article:

“It’s clear that for the patient, the ritual of treatment can be very powerful…This study suggests that in addition to active therapies for fixing diseases, the idea of receiving care is a critical component of what patients value in health care. In a climate of patient dissatisfaction, this may be an important lesson.”

However, I wonder if it cannot also be understood another way – which is that patients are likely to feel like their symptoms have been improved after a visit to a doctor, even if objectively their airway is still compromised.

How Should this Impact Asthma Treatment?

So what can be done with this new information? I think that Jon’s advice about patient’s knowing their own symptoms and expressing them clearly to their doctors is critical. I also agree completely with his advice that patients should ask for an objective measure of their respiratory improvement before leaving a health care facility. These two steps seem key to making sure that patients objective health is being improved – not just their subjective opinion of improvement. Finally, I think that it is critical that parents act as the best advocates possible for their children – which may include making sure that the children are heard on their own symptoms since parents are not the most reliable reporters.

What do you think? Are there other tips for asthma patients and their parents out there? How do respond to these new studies?

Related Videos:

Videos about Asthma

Related Articles:

Four Tips For Getting the Medical Care You Need When You Are Having An Asthma Problem

Asthma – How to Protect Your Child When the Steroid Inhaler Fails

Use Of Acetaminophen In Pregnancy Associated With Increased Asthma Symptoms In Children

Service dogs in school — a fresh look

Friday, July 22nd, 2011
Service Dog and Boy

service dogs

A while back I wrote a piece on the topic of service dogs for kids and mentioned the use of service dogs in schools. A regular reader of our blog then wrote in with a number of comments and questions about the propriety of dogs in schools. To help answer her questions, I recently spoke with Nancy Fierer, who is the Director at Susquehanna Service Dogs in Harrisburg, Pennsylvania, which is an organization that trains and places service dogs. Susquehanna is the organization that placed two of the dogs mentioned in this NPR story.

The ADA and dogs in school

I also did a little more research on the Americans with Disabilities Act (“ADA”) and its impact on the issue. The ADA requires that all public facilities allow a disabled person and his or her service dog (not pets) to enter the premises just the same as a non-disabled person. So is a school considered a public facility? It’s an interesting question. On the one hand it is accessible to the public in the sense that parents and students can freely enter a school. However, if you’re not the parent of a child at the school, can you just walk into a school and roam the halls like you might roam around a mall? I think if you tried that, you would get stopped pretty quickly and asked to leave if you had no valid business there. However, the law appears to be settled that schools are considered public facilities at least for those areas that are open to the public such as administrative offices, gymnasiums during sporting events, and auditoriums during public events. Therefore, schools must be accessible to service dogs in these public areas. For class rooms, however, it’s not so clear. While the law appears to favor allowing service dogs in class rooms, it is being decided on a case-by-case basis because there are other considerations as well – the age of the child, the disability at issue, the ability to control the dog, etc.

How much school assistance is necessary?

I have to admit that when I first wrote on this topic, I had envisioned that the dog and child were a self-contained unit that required little in the way of adult assistance. Ms. Fierer indicated that that is usually not the case. Depending on the age of the child and the level of disability, the child may be able to care for the dog independently. However, in most instances an adult (teacher’s aide or nurse perhaps) is required to pitch in with help giving the dog water and taking it out for bathroom breaks. Ms. Fierer indicated that the dog does need water breaks during the day (feeding can be done at home before and after school). This is usually accomplished by keeping a water bowl in a nearby room – perhaps a nurse’s office or a counselor’s office. Several times a day, either the child (if he/she is old enough) or an adult can take the dog for a drink. The same is true for bathroom breaks (pee only; No. 2 is usually taken care of at home). Again, service dogs do require assistance from the school but from what Ms. Fierer told me, the disruption is fairly minimal and can be worked out with proper planning.

Controlling a service dog

A larger issue is the child’s ability to control the dog. Even though service dogs are highly trained, the owner (in this case a child) must still be able to control the dog before being permitted to take a dog into school. These include such basic commands as making the dog sit, stay, come, leave it, and walk on loose leash. These are some of the common commands that all service dogs must know. In addition, a service dog also receives additional training in a particular disability and learns specific commands unique to that disability, e.g., retrieving specific items, pulling a wheelchair, responding to seizures, search and rescue. These commands must be mastered as well. For example, if an autistic child is in need of the dog to put its head in the child’s lap to help calm him/her down, the child (or a trained adult) has to be able to give the dog that command. If the child cannot give that command to the dog, then it undermines the usefulness of the dog in school.

Because of the demands that service dogs place on the child, very young children usually do not take dogs to school unescorted. Ms. Fierer said she would be surprised to see a six-year-old, for example, taking a dog to school alone. Older children can, with proper training, be permitted to take a dog to school alone. To ensure that the child is capable of caring for the dog, Susquehanna utilizes the Assistance Dogs International Public Access Test. This test requires the owner and the dog to perform multiple tests in a variety of settings to ensure that the dog is well-trained and that the owner can properly control the dog. For children, Ms. Fierer indicated that the testing is usually administered with the parent and child because she uses the team approach – the parent, child and dog are a team. For a child taking the dog to school, however, the parent is usually not there so the child must be able to control the dog independently. Only when a child is adept at controlling the dog should the child be permitted to take the dog to school. Even then, parents have to work closely with the child’s teacher and other school staff to coordinate the details of how the dog will be cared for.

Other concerns

Our reader also asked questions about whether service dogs are a distraction in school and whether they can pose a danger to other children. After talking to Ms. Fierer, it’s my opinion that these are not major concerns. As for being a distraction, Ms. Fierer said that is usually not the case. Service dogs are generally introduced into the school gradually, starting with maybe a half-hour per day and building from there. The children get accustomed to the dog and the novelty soon wears off. Also, the other children need to be educated that this is a service dog and not a pet to be played with. Children can easily learn this lesson. As for being a danger to other children, Ms. Fierer said she has never heard of a dangerous incident happening at school such as a dog biting a child. These dogs are amazingly well-trained and the trainers allow zero tolerance for aggressive behavior. If a dog shows any aggression, that dog does not make the cut for being a service dog. Therefore, I don’t believe this concern is a valid reason for denying a child a service dog.

Training a service dog

In terms of the actual training given to the dogs, Ms. Fierer said that when a puppy is eight weeks old, it starts living with a dedicated puppy handler who is responsible for teaching the dog basic manners.  This time includes classes at Susquehanna twice per month.  This arrangement goes on till the dog is 18 months old, at which time the dog receives about six months of intense training.  About 50-60 percent of training is the same for all service dogs. The rest is devoted to the unique needs of each disability. Before a dog is placed, Susquehanna spends about 2 and ½ weeks training the family that is receiving the dog. Even after placement, Susquehanna continues to do follow-up training – at first on a weekly basis and then gradually declining over the next six months. It even does annual re-testing.

I hope this follow-up addresses our readers’ concerns. Ms. Fierer emphasized that service dogs are not the solution for every child. Susquehanna actually does therapy sessions with families before even agreeing to place a dog to ensure that the dog and the family are a good fit. She indicated that it is a big responsibility to own a service dog and it is not a decision that is made lightly by the dog trainers. However, for the right child and the right family, a service dog can be an amazing asset.

Related Nash and Associates Links:

Service Dogs for Kids

 

photo from servicedogtraining.wordpress.com

 

 

 

 

 

 

 

 

 

 

 

Week in Review: (June 27 – July 1, 2011) Eye Opener Health, Law and Medicine Blog

Monday, July 4th, 2011

Eye Opener’s Week in Review

From the (guest) editor:  Good morning!  With the morning workout complete, I thought now would be a good time to take a look back.  We had a sneaking suspicion that with the excellent weather forecast you might spend some time outdoors.  Before you do, make sure you read our Summer Series.  This week we gave you what you need to know before you (and your little ones) head to that family BBQ.  Enjoy your Independence Day, drink a tall glass of fresh squeezed lemonade and enjoy!

–Jason Penn, guest editor

Cancer: HIV/AIDS Patients At Increased Risk

By Jon Stefanuca

As if life with HIV/AIDS is not difficult enough, researchers have also found that HIV/AIDS patients are also more prone to developing various malignancies when compared with the non-infected population. In fact, cancer is one of the leading causes ofmortality in the HIV/AIDS  population. It is estimated that 30%-40% of HIV patients will develop some type of cancer during their life time.  Read more

Skin Cancer: Types, Causes and How to Protect Yourself

By Sara Keogh

We can all agree that “skin cancer” is bad.  When we refer to skin cancer, what do we mean?  Most often we are referring to squamous cell, basilar cell or malignant melanoma.  On Tuesday, Sara described the different types of skin cancer and the  associated rates and survival statistics.  Read more

Skin Cancer Prevention: Will new FDA Rules Help?

By Sara Keogh

So Sara’s piece on Tuesday convinced you that sunscreen is necessary?  But how do you pick one?  Last week, the FDA announced new regulations of sunscreen. If sunscreens meet the new legal standards, they can use certain marketing phrases so that consumers know what level of protection will be provided by the product.  Read more

Diseases of Summer: Ticks and Lyme Disease

By Theresa Neumann

Summer is heating up, and there are lots of outdoor activities in which to participate. Along with the thermostat, however, there is also a rise in the deer tick population! This equates to an increase in Lyme disease, the most commonly reported vector-borne illness in America! Maryland, Virginia, Pennsylvania, Delaware and New Jersey all all“hotbeds” for this disease, comprising 5 of the top  12 states comprising 95% of all Lyme disease cases nationwide. Before you leave for the family picnic, you should read more

Skin Cancer Prevention: The Dangers of Tanning Beds

By Sara Keogh

It is popular to “pre-bake” before hitting the beach.  A tanning bed is often the The use of tanning beds or “indoor tanning” greatly increases a person’s risk of developing skin cancer. It is a completely voluntary exposure to UV radiation, and yet many people choose to expose themselves despite all of the risks.  Before you opt to “fake and bake,” you should read more

Sneak Peak of the Week Ahead:

The Eye Opener and its writers are excited about the week ahead too!  Here’s a sneak peak of what’s in store for you:

  • Service dogs for children:  more than just a pet
  • Legal Boot Camp is back in session and Part IV of our Cerebral Palsy tutorial.
  • And more!

 

Images courtesy of:

www.news.getaroom.com

www.topnews.net.nz

www.dsf.chesco.org

www.magazine.ayurvediccure.com

www.frenchtribune.com

 

 

Week in Review (April 16 – 20, 2011) The Eye Opener Health, Law and Medicine Blog

Saturday, May 21st, 2011

From the Editor (Brian Nash)

Another week of great posts (IMHO) by our blawgers. Apparently, I’m not the only one who thinks so since we have now surpassed 21,000 page views in the last 30 days. The number keeps rising. Our sincere gratitude to all our readers!

Our topics were once again quite varied. They spanned the law, health, science and medicine. We even had a piece on a local event – Marathon Kids. This piece is part of our new program to promote charities and civic organizations in our own backyard – Baltimore and Washington.

We try week in and week out to find topics of interest for you, our readers. If you ever have any suggestions for topics of interest to you, please leave a comment or send us an email or fill-out the contact form with your thoughts and suggestions. We’d love to hear from you.

Let’s get to it then. What did we cover this past week that you might be interested in reading? Take a look -

Why early settlement is a win-win for all

By: Michael Sanders

There is an old adage in the law that cases settle on the courthouse steps. There is a reason for that. When the parties are actually walking into court to try their case, they seem to suddenly recognize that there are significant risks to going to trial, and that there is serious money at stake. When you go to trial, only one side can win. The other side goes home a loser. Faced with such a stark outcome, both sides tend to become more reasonable in their assessment of their case and more willing to talk settlement. After all, despite all the years of experience that trial attorneys amass, no one can ever predict what a jury is going to do in any specific case. As one mediator I know likes to tell the litigants, going to court is like going to Vegas:  you roll the dice and you take your chances. Read more….

Milk from Mom: Effective in preventing common infant complication (NEC)

By: Jason Penn

The debate among parents regarding the use of human milk vs. formula wages on, but according to a recent study, you can chalk one up for the human body.  That study, headed by the Johns Hopkins University in Baltimore, concluded that premature babies fed human donor milk were less likely to develop the intestinal condition necrotizing enterocolitis (NEC).  Both sides has its advocates, willing to do battle at any time. When it comes to NEC, Mom’s milk has the decided advantage. Read more….

H.I.V. treatment advances, but what are the implications of terminating research early?

By: Sarah Keogh

Last week, I read some exciting news about H.I.V. treatment and transmission. A New York Times article reported that a large clinical trial found that “[p]eople infected with the virus that causes AIDS are far less likely to infect their sexual partners if they are put on treatment immediately instead of waiting until their immune systems begin to deteriorate…” The study found that “[p]atients with H.I.V. were 96 percent less likely to pass on the infection if they were taking antiretroviral drugs…” These findings are overwhelmingly positive and the implication for public health is huge. Read more….

A Windy, Rainy but Fabulous Day in Baltimore: Marathon Kids Final Mile Celebration

By: Rachel Leyko

Despite the wind and rain, this past Saturday I volunteered at the Marathon Kids Final Mile Celebration Event at Western Polytechnic High School in Northwest Baltimore.  I learned of the event through the Junior League of Baltimore and to be honest, prior to Saturday, I did not know much about the organization, its purpose or effect on the children it sought to serve.  However, after Saturday’s event, not only was I impressed with the purpose of Marathon Kids, but I saw firsthand the positive effect this program has had on the children who have participated. Read more….

Acquired Brain Injuries: Causes and Impact

By: Theresa Neumann

On the heels of Jason Penn’s blogregarding calling “911″ for signs of a possible stroke, I decided to introduce a variety of acquired brain injuries for further discussion in future blogs since damage to the brain results in some of the most catastrophic injuries possibly sustained by the human body with significant “collateral damage” for all of the friends and family involved in the individual’s life. Read more….


Sneak Peak of the Week Ahead

Some topics we’ll be covering next week…and then some…

  • You or someone you know has been diagnosed with cancer, now you have to deal with the horror. Jon Stefanuca will be writing a piece based on our experiences with a number of clients “living with cancer.”
  • Mike Sanders and I have both recently resolved cases involving families who have lost a child. Mike’s involved the death of a fetus very near term. He’ll share that story and the experience of the case with you.
  • Maybe those of you who have children with special needs are familiar with the local (Maryland and Washington, D.C.) resources to help you and your child. For those who may not be or just want to learn more, Jason Penn will be providing information on this next week.
  • You may have heard the recent news about labeling of certain medications for children. Sarah Keogh will report on this and also delve into some practical problems and issues that parents face every day in terms of medicating their children.
  • We’re going to begin a new series on exactly what is recoverable in our jurisdictions (Washington, D.C and Maryland) under what is known as the Survival Act and the Wrongful Death Act. We’ll be paying particular attention to issues involving what’s known as pecuniary benefits, loss wages and diminished earning capacity. Should be educational. We hope you enjoy it.

Have a great weekend, Everyone!

Dogs a huge help for special needs kids

Monday, May 9th, 2011

Dogs and kids just seem to go together. Whether it’s running around the yard and roughhousing or just sitting quietly watching TV together on the sofa, dogs seem to gravitate toward kids. For some special needs kids, however, dogs are more than just a friend and play buddy; they are actually a daily caregiver.

The idea of service dogs for disabled children is a little-known yet burgeoning niche in the world of special needs. Everyone knows about service dogs for the blind. I have to admit that until recently, I had never even considered service dogs for other disabilities, let alone children. Then a friend of mine whose son is autistic mentioned that she was thinking about getting an autism service dog for her son. I was puzzled. Her son suffers from sensory processing disorder so I didn’t understand what a dog would be able to do for him. Kids with autism usually don’t have physical handicaps. But as I talked to her and started reading up on the topic, I found that well-trained dogs can be a huge help to autistic kids, as well as kids with other disabilities.

For autistic children, service dogs don’t offer specific physical assistance, but are highly trained in behavior disruption, which is a major component of autism. As any parent of an autistic child can tell you, behavior disruption is common. It can be different triggers for different children, but the common denominator is that something (usually something benign to most of us) sets off what we laypeople would call an emotional or physical meltdown. This can be a mild tantrum or can be a full-blown one complete with collapsing on the floor and shrieking. Trying to calm an autistic child in the throes of such a meltdown can be a major challenge. It turns out that a dog trained to recognize such behavior and engage the child is a highly calming influence on the child. The dog essentially soothes the child and comforts him or her, shortening the duration and severity of the meltdown, and also cutting down on the number of meltdowns. Rather than getting overly focused on whatever it is that is bothering him or her, the child seems to focus on the ever-present dog and can bypass what otherwise might trigger a reaction.

The dog also gives other support that is less tangible but equally important – giving the child something to focus on if distracted, providing companionship, and assisting with developing friendships with other children. Special needs children are sadly often excluded by so-called normal children which can add a tremendous feeling of isolation for such children. Having a service dog helps break the ice with new kids and provides a constant companion when other children are not around.

Physically, a service dog also helps protect the child and keep him or her safe. One major concern with autistic children is that they are easily distracted and may not think as logically as other children.  They are more prone to wandering off in public because they get distracted by something and follow it, even if it takes them into traffic or near a dangerous body of water.  They may decide to leave the house alone for no apparent reason, even in the middle of the night. Service dogs are trained to restrain the child and act as a second pair of eyes on the child, which is a huge asset to the parents.

Legal fight over service dogs in school

A great piece of news recently came out of Oregon involving an autistic boy named Scooter Givens and his service dog, Madison. For years, Scooter’s parents fought their son’s school for the right to have the dog attend school with him under the ADA (American with Disabilities Act). The school fought back. Finally, the school backed down and agreed to at least try to allow Scooter to bring Madison to school with him. They are starting with part-time hours and working up to full days. If Madison can keep Scooter from having meltdowns, it should be a win-win for both the school and the family.

Cost and Availability

Service dogs are not cheap, nor are they readily available. A well-trained dog can cost  upwards of $20,000, depending on the level of training that is required (which is why my friend is not heading out this weekend to buy one). While this may seem excessive, the cost is actually justified when you realize that it can take six months or more of intense work  to properly train a service dog. That is months of food, shelter and paying a trainer to spend  hundreds of hours training each dog, as well as the additional training time when the dog is matched with the family. It is a labor-intensive process. However, there are ways to meet the cost. Many training facilities seek outside funding to help defray the costs of training, which lowers the ultimate cost to the family. Some families will actually do fundraising themselves to try to pay their portion of the cost. Even with this approach, however, the sad fact is that service dogs are unfortunately out of reach for a large number of people, especially when you consider the other high costs of raising a special needs child.

Other disabilities:

In addition to autism, service dogs are trained to care for people with other disabilities – deafness, mobility issues, and one that I found absolutely fascinating – seizure disorder. Dogs are trained to assist people who suffer seizures by getting the telephone and medicines, and keeping the person physically safe during a seizure. Some dogs can even go so far as to anticipate an oncoming seizure and alert the person to lay down in a safe position before the seizure starts. How the dog knows this is anyone’s guess. So far, science has been unable to explain it. Some researchers theorize that during the earliest phase of a seizure, the person’s electrical brain activity subtly changes a person’s odor which the dog detects. Dogs have a sense of smell that is 300 times stronger than what we have. While this may be the explanation, no one knows for sure so it remains a fascinating mystery.

If you are interested in a special needs dog, there are a number of organizations out there for you to consider. Here are just a few:

4 Paws for Ability:  http://www.4pawsforability.org/

North Star Foundation:  http://www.northstardogs.com/autism.shtml

Dogs for the Deaf:   http://www.dogsforthedeaf.org/index.php

Have any of our readers had any experience with special needs dogs?  I would love to hear your stories.

 

Photo from staplenews.com

 

 

What is a “medical home”? Do your children have one?

Thursday, April 14th, 2011

Image from www.hi-consulting.net

What is a “medical home”? Do you feel like you or your children have a medical home? Is it one that feels comfortable and accessible and all of the things the term “home” implies?

A couple of years ago, I was involved in some policy work surrounding the idea of the medical home and how to better ensure that children in Baltimore City had a medical home. When I first became involved in this project, I thought I understood the concept of a medical home, but I could not really define it. Working with a group of professionals from medical, public health and policy backgrounds, we spent several months furthering our understanding of what is a “medical home” before we could determine how to measure if children had adequate medical homes.

Today, I am not going to delve into that kind of detail about this topic. However, I thought it might be interesting to think about the concept of a medical home and some of the benefits and potential challenges this poses for families.  In this post, I’ll provide some definitions of “medical home” and provide some information about how many children are receiving care in a medical home.  I’ll address this topic in a future post about alternative health care locations.

I think that the idea of a medical home speaks to an often forgotten concept in providing the best health care with the fewest mistakes – consistency of care from a committed health care provider. The National Center for Medical Home Implementation, which is “a cooperative agreement between the Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP)”, has a website full of information about the medical home. Their definition of medical home is:

A family-centered medical home is not a building, house, hospital, or home healthcare service, but rather an approach to providing comprehensive primary care.

I think that this is a great overview of the concept. The definition continues:

In a family-centered medical home the pediatric care team works in partnership with a child and a child’s family to assure that all of the medical and non-medical needs of the patient are met.

Through this partnership the pediatric care team can help the family/patient access, coordinate, and understand specialty care, educational services, out-of-home care, family support, and other public and private community services that are important for the overall health of the child and family.

The American Academy of Pediatrics (AAP) developed the medical home model for delivering primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective to all children and youth, including those with special health care needs.

I think that we all hope that our health care is provided in a comprehensive way such as is described by this definition. However, too often, we all know that medical care is provided in a more complex web of services in which the patient or patient’s family is left to coordinate care. This reality is even more vivid for those families who are uninsured or under-insured and are not able to receive all of their care from a primary care provider who is able to best coordinate their care.

An article in Bloomberg Business Week reports that a new study found that “Children who have a “medical home” – that is, a pediatrician or nurse they see regularly who offers comprehensive care — are more likely to have their medical and dental needs met…” However, the article goes on to say that children “…who have a chronic condition or special need and require the most care” are the least likely to have a medical home. The article states that only 57% of children in this country “…received care in medical homes in 2007…”  The study also found that:

Younger children were more likely to have a medical home than older children.

There were racial and ethnic disparities as well: White children were the most likely to have a medical home, while Hispanic children were the least likely, followed closely by black children.

Mothers without a high school education were significantly less likely to report their children had a medical home, as were the poor, non-English speaking families and the uninsured.

About 61 percent of children whose parents said they were in excellent or very good health had a medical home, compared to 35 percent of kids in fair or poor health.

These children, who are most likely to need a medical home, are the least likely to have one. This is despite research, and common sense, showing that medical homes are able to provide better health care at lower cost. The Bloomberg article says that  “[c]hildren without a medical home were three to four times more likely to have an unmet medical or dental need, according to the study, published online March 14 in the journal Pediatrics.”  Additionally, “[c]hildren who received care in medical homes were also more likely to have annual preventive medical visits, the study found.”

As I was reading these statistics, I was imagining the children without a medical home as children who often used clinics or emergency rooms for their health care. However, the Bloomberg article says that the study found that

…nearly all children — 93 percent — had a usual source of care, and about the same number had a personal physician or nurse. About 82 percent of parents said they had few problems obtaining referrals, 69 percent said they received help with coordinating care when needed and 67 percent said they received family-centered care.

But only 57 percent of parents reported that the health care their children received met all of those criteria — the definition of a medical home.

It is the comprehensive care provided by all of the elements of the medical home that create the best results in terms of patient care and cost savings. It is this combination that is lacking in many providers of pediatric care.

Do the members of your family receive their care in a medical home? Could you answer yes to all of the questions above defining a medical home? Is this important to you? What would make it easier for you to receive this kind of care for yourself or your child?

 

The Week in Review: did you miss last week’s posts on health, safety, medicine, law and healthcare? A sneak preview of the week ahead.

Saturday, March 26th, 2011

Eye Opener - Nash & Associates Blog

This week we are starting a weekly posting of our blogs of this past week, some key blogs of interest to our more than 6,500 monthly readers, and a sneak preview of what’s coming next week. We would really like for you to join our community of readers, so don’t forget to hit the RSS Feedburner button or subscribe to our blog, Eye Opener. We share with you our thoughts, insights and analysis of what’s new in the law, the world of law and medicine, health, patient and consumer safety as well as a host of other topics that we deal with as lawyers on a daily basis in trying to serve the needs of our clients.

For those of you on Twitter, Facebook and LinkedIn, we have a vibrant presence on those social networks as well. Hit the icon(s) of your choice and become part of our ever-growing social network community. Share your thoughts, share our posts, give us your feedback on what YOU would like to hear about.

This Past Week

Birth Defect Updates: Warnings About Opioid Use Before and During Pregnancy In this post, Sarah Keogh, explored a new report which is vital information for women who are pregnant or thinking about becoming pregnant. Opiods, narcotic pain killers such as morphine, codeine, hydrocodone and oxycodone, are a valuable part of a physician’s drug armamentarium, but they can have significant implications for a fetus if taken during pregnancy or even just before a woman become pregnant. Read Sarah’s important piece, be informed and learn why you should discuss the use of any such drugs with your obstetrician/gynecologist before taking them.

 

Doctors Disciplined by Their Own Hospitals Escape Actions by Licensing Boards. Who’s at Fault? Brian Nash, founder of the firm, writes about a serious problem with this country’s medical licensing boards, who have failed, at an alarming rate, to take disciplinary action against physicians, who have had their hospital privileges revoked, suspended or curtailed for issues such as sub-standard care, moral transgressions and the like. Public Citizen brought this story to light; we analyze the issue and share our thoughts on this serious patient health and safety issue.

Decreasing Obesity Risks in Children: Another Benefit of Breastfeeding A mom herself and an advocate for public health childhood obesityand safety throughout her legal career, Sarah Keogh reports on a recent study covered by the Baltimore Sun about the long-term benefits of breastfeeding for at least six months. The issue for many, however, is – how can a family of two income earners afford to do this? Does our society and the workplace really lend itself to this practice? Read Sarah’s compelling piece and share your experience and thoughts.

The Week Ahead

Sneak preview of what’s ahead during the week of March 28, 2011:

medical technology

Brian Nash begins a series on the issue of medical technology and patient health/safety. Is the medical community being properly trained in the proper and safe use of all the new medical devices that are hitting our hospitals, clinics and medical offices? Is the rush to have the newest, shiniest and “best” new medical device really advancing the safe and effective delivery of healthcare in our country? Here’s a sneak preview…

Dr. Roper and so many other dedicated healthcare professionals are faced daily with the same issue – “…challenged by the task of putting lofty ideas into practice at the local level. I remain very committed to the effort, but we are daily challenged to put the best ideas into practice.” Put another way – at least for me – taking public healthcare policy and practices and making a much better widget.

As these lofty concepts were debated, published and analyzed, technology streaked along with its new bells and whistles at what some might call an amazing – almost mystifying – pace. Did you really envision yourself 25 years ago sitting with your iPhone or iPad and scouring the world’s news, chatting with your friends and followers on the other side of the planet, watching the latest streaming video of March Madness or sharing every random thought you have on Twitter or Facebook?

Some top posts you may have missed

What happens when your surgeon has been up all night and you are being wheeled into the operating room to be his or her next surgical case? We looked at an article from The New England Journal of Medicine that addressed this patient safety issue and made recommendations for change.  See our posting entitled A Surgeon’s Sleep Deprivation and Elective Surgery-Not a good (or safe) combination.

Dr. Kevin Pho, who is the well known editor and contributor of KevinMD.com, wrote a piece in which he espoused his belief that medical malpractice cases really do not improve patient safety. Having read this piece and finding that this was just too much to digest, Brian Nash wrote a counter-piece entitled Malpractice System Doesn’t Improve Patient Safety – Oh Really? What this led to was cross-posting by Dr. Kevin Pho on our blog, Eye Opener, and our posting on his blog. Our blog post (as best I can tell) led to one of the all-time highest postings of comments by readers of KevinMD. One thing all participants in the “debate” learned – we are both passionate about our positions. Read what led to this firestorm.

 

Decreasing Obesity Risks in Children: Another Benefit of Breastfeeding

Friday, March 25th, 2011

Image from fooducate.com

In the United States today, one of the major health problems is obesity. The CDC reports that “[i]n 2009, only Colorado and the District of Columbia had a prevalence of obesity less than 20%.”  The number of both adults and children who are obese is huge and continues to rise dramatically.  The CDC website provides maps that show just how prevalent this problem is in our country. Particularly troubling is that “[t]hirty-three states had a prevalence equal to or greater than 25%; nine of these states (Alabama, Arkansas, Kentucky, Louisiana, Mississippi, Missouri, Oklahoma, Tennessee, and West Virginia) had a prevalence of obesity equal to or greater than 30%).  This represents an enormous number of people in our country who are at risk for major health complications, such as “cardiovascular disease, certain types of cancer, and type 2 diabetes.”

While there has been an emphasis in our country on various ways to decrease these obesity statistics (including improving nutrition and increasing exercise), I wonder whether additional emphasis should be paid to children being given a great start to health. A recent article in the Baltimore Sun caught my attention. The article explains how diabetic moms, including those who had gestational diabetes during pregnancy but are not otherwise diabetic, are both more likely to give birth to a larger than average baby and also how their child is “more likely to become obese in childhood.”  The good news, the article explains, is that:

…a new study says that if you breastfeed your baby for at least six months, your child will be no more likely to put on weight than those whose moms are not diabetic.

This is just one more example of how breastfeeding for at least six months can dramatically improve your child’s chances of lifelong health.  Through breastfeeding alone, these moms can erase the increased risk that these children will become obese.

What they found appears to be a real advantage for breastfeeding: If the babies had been breastfed for six months or more, children born to diabetic moms looked nearly the same as the children of non-diabetic moms. And they were no more likely to be obese.

On the other hand, children who were breastfed for less than six months — and who had been exposed to diabetes in the womb — had significantly higher BMIs, thicker waists and stored more fat around their midsections than the other children in the study.

While I was excited to read about one more reason to support breastfeeding, I was concerned about whether this is a realistic choice for many families in our country.  Many moms who are committed to breastfeeding their children and who are successful at the start, do not continue breastfeeding for at least six months. The CDC Breastfeeding Report Card for 2010 says that “…3 out of every 4 new mothers in the United States now starts out breastfeeding… However, rates of breastfeeding at 6 and 12 months as well as rates of exclusive breastfeeding at 3 and 6 months remain stagnant and low.”  The national average is that while 75% of moms have breastfed, only 43% are breastfeeding at all at 6 months and only a mere 13.3% are exclusively breastfeeding at 6 months.  At 3 months, a time when infants would not have started solid food, only 33% of moms are still exclusively breastfeeding.  This means that there is a large drop off from what moms do when their babies are born and what they are doing by the time their babies reach 3 months.

However, the study about diabetes found that at least six months of breastfeeding was essential in protecting these kids from the increased risks of obesity. From both personal experience and anecdotal evidence, I suspect that many families are facing hard decisions about employment and breastfeeding. I suspect that a significant part of the large drop off between the numbers of moms’ breastfeeding at birth and those breastfeeding exclusively at 3 months has to do with employment. Given that the US lags so far behind other countries in paid parental leave, most moms have no choice but to go back to work full-time by the time their infants are 3 months (if not earlier).  Many moms face no choice at that point but to stop or severely limit breastfeeding, as few employers offer the time, space or scheduling to truly make moms successful at the difficult job of trying to pump while working.

I believe that the health care costs of treating individuals with obesity and all of the associated health problems should be examined against the costs of providing more complete support to new families.  What do you think?  Could employers better support breastfeeding in an attempt to increase the number of healthy children whose risks of obesity are lowered? Do you think that lack of paid leave or increased support in the workplace for breastfeeding is really the reason for decreased breastfeeding or are there other factors at play?

 

 

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?