CLSF News 

Vol 19 Issue3, October, 2010

Behavioral Treatment for ADHD

Despite the well documented benefits of stimulant medication for treating ADHD, medication is no panacea and some children with ADHD should not receive it. There are several reasons for this. First, although medication helps the majority of children with ADHD, as many as 20% derive no real benefit from medication. Second, some children experience side effects that prevent them from receiving medication on an extended basis. Third, many children who benefit from medication still have difficulties with primary ADHD symptoms or associated problems which must be targeted via other means. Fourth, some children with ADHD can have their symptoms managed effectively without medication (this is most likely to be true, however, when symptoms are relatively mild.) For all these reasons, other treatments are often necessary - some would say always necessary - to effectively treat ADHD.

An important non-medical approach used in treating children with ADHD is known as behavior therapy or behavior management. Behavior therapy is based on several simple and sensible notions about what leads children to behave in socially appropriate ways. One reason is that children generally want to please their parents and feel good about themselves when their parent is proud of them. When the relationship between parent and child is basically positive, this is a very important source of motivation. A second reason that children behave appropriately is to obtain positive consequences for doing so (i.e. privileges or rewards). Finally, children will behave appropriately to avoid the negative consequences that follow inappropriate behavior.

The goal of behavior therapy, therefore, is to increase the frequency of desirable behavior by increasing the child's interest in pleasing parents and by providing positive consequences when the child behaves. Inappropriate behavior is reduced by consistently providing negative consequences when such behavior occurs. This is a simplified, but not unreasonable view, of what behavior therapy is all about.

Using Positive Reinforcement

The second focus of behavioral treatment involves providing your child with positive consequences for behaving in appropriate ways. The simple logic is that you can increase the frequency of desired behavior (e.g. putting away toys) by providing rewards when such behavior occurs. At the simplest level, this requires nothing more than noticing when your child is doing something you want to encourage (e.g. playing quietly) and making sure to comment on it ("Your doing such a nice job of playing quietly. I really appreciate that."). Think about the kinds of behavior you want to encourage, make sure your child understands what you want him or her to do, and then be sure to praise your child whenever you happen to observe it occurring. This simple technique of noticing good behavior is easy to overlook and can be quite helpful. I often recommend to parents that they make a conscious effort to catch their child doing something good at least 5 times a day and to point it out. When children are convinced that their parents notice and appreciate their efforts at behaving well, it frequently increases their desire to do so.

Designing a good behavior plan and implementing it effectively is not easy, and parents may often require professional assistance to do this successfully. Although the specifics of a good plan will vary from child to child and from parent to parent, there are several general principles that are important to keep in mind:

Be very clear about what behavior is expected of your child in order to earn the reward and make sure your child's understands this. For example, "Listening to what I say" would be too vague; "Picking up your toys and putting them away the first time I ask" is more specific.

Make sure that the expectation you have for your child is reasonable - do not set you and your child up for failure by having expectations that are not appropriate for your child's age. It is always a good idea to reflect on what you expect from your child and consider whether your expectations are reasonable. For example, punishing a 5 year old for being unable to sit quietly at the dinner table for an hour will generally create problems because most 5 year olds simply can not do this. For children with ADHD, behavioral expectations need to take this into account in addition to the child's age.

Don't try to work on too many different things at one time. It is generally better to focus on a couple of things that are really important rather than taking on everything at once. Choose your battles carefully and selectively!

Let your child participate in choosing the types of rewards he or she can earn Children are generally more invested in this type of program when they have some input in itís design. Try to create the feeling that this is something that you are doing with your child rather than something you are doing to your child.

Design the program so your child has a good chance to experience some initial success. As their behavior improves, you can gradually raise the criterion required to earn rewards.

Be sure to provide lots of social rewards (e.g. praise) in addition to the more tangible rewards that can be earned.
This is a great way to increase your child’s desire to please you and to increase the amount of positive feelings between you and your child.

Be consistent. For this approach to succeed you have to apply it consistently. Using the program one day but not the next, or failing to provide rewards when they are earned, is a sure fire way to keep this from being helpful.

Using Negative Consequences

In addition to using positive reinforcement to encourage good behavior, behavioral treatment also relies on negative consequences or punishment to reduce undesirable behavior. Simply stated, when a particular behavior is consistently followed by negative consequences for a child, it should diminish in frequency and intensity.

Have a Game Plan

When your child initially fails to comply you could impose a 5 minute time-out. If the non-compliance continues you could say "If you don't do what your told now, the time out will increase to 10 minutes." Continued non-compliance results in loss of TV in addition to the time out. After that, an earlier bed time could be imposed. You have to decide what specifics make sense, of course, but the general point is to have an escalating series of consequences that you can calmly but firmly announce and calmly but firmly enforce. Having this plan in mind can help you to keep your cool and prevent you from blurting out a punishment that is not going to be helpful. If you can stick with this, your child should learn that there is something nothing to be gained by persistent disobedience.

Using a combination of special time, positive reinforcement, and negative consequences to encourage good behavior is, of course, a technique that can be useful with all children. Although the basic principles are similar for children with and without ADHD, factors specific to ADHD generally require certain modifications to be made. Several of these important modifications are:

In theory, virtually any type of behavior can be targeted using a behavioral treatment approach. For example, primary ADHD symptoms such as not completing tasks can be targeted by providing rewards for task completion. Symptoms such as interrupting and talking out of turn can be targeted in similar ways. Associated difficulties such as deliberate non-compliance, aggression, ect. can also be targeted in a behavioral treatment plan.

Source: http://www.athealth.com/Consumer/farticles/Rabiner.html

Candid Camera

Chiropractic and Scoliosis

There are several types of scoliosis, the most common being "idiopathic scoliosis," so called because of its unknown origin.  Scoliosis is a lateral curve most commonly seen in the mid back region, but will affect the entire vertebral column. According to the journal Spine, "Idiopathic scoliosis is the most common bone abnormality, seen in 4% to 6% of the world's population."

Scoliosis is 4 to 9 times more common in females than males and is most prevalent between the ages of 3 to 16 years of age. Females 10 to 12 years old are the most common to display the physical symptoms. Scoliosis, if left untreated will lead not only to a crooked spine, but can cause degenerative arthritis, cardio-pulmonary complications, and many serious joint dysfunctions.

Treatment of scoliosis is dependent upon the degree of lateral curvature in the spine. A 10° curve or less is considered medically normal and does not require aggressive treatment. Curves in the 10 to 20° range bear watching. Curves over 20° require an orthopedic consult and possible bracing. Curves over 45° are very serious and may require surgery.

In a recent study presented at the International Conference of Spine Care in England, Dr. Lanz Ph.D. stated, "Chiropractic care appears to offer a distinct advantage in the management of early stages of scoliosis." The studies showed a 2.6° decrease in the curve per year vs. traditional medical care. Researchers also point out that curves under 20° offer no medical treatments.

Chiropractic on the other hand is most effective in the 0° to 20° range. Early detection through the use of X-rays is often necessary to determine the best course of action. Chiropractic manipulation together with a specific exercise program will often stop and help reduce the curve from progressing.

Proper scoliosis management always starts with early diagnosis and treatment. Medical doctors, Chiropractors, and Pediatricians now routinely screen children on a regular basis. School screenings are almost universal across the U.S. and because of these screenings, the rates of bracing and surgery have dropped dramatically.

Source: http://www.tessendorfchiro.com/html/scoliosis.html 

Dr. Lanz is the only one to conduct any studies on scoliosis and chiropractic to my knowledge - it should be noted that he is a chiropractor. It is important to understand that a curve less than 10 degrees is considered medically normal and may never progress beyond that. Chiropractic is most effective in the 0 to 20 degree range, in other words, once you get even a little beyond the normal range, it's not really effective. I'm not trying to discourage anyone from using chiropractic - but if the curve progresses to greater than 20 degrees, you will need to consider traditional bracing and possibly fusion. Chiropractic's efficacy is limited. -MCH

Circle of Friends

Cervical Injury Discussion

Kyle, Age 15

I’ve had him at the hospital the last couple days. There was an accident at school and Kyle was injured. He fell out of his wheelchair and on to the floor. Due to this he has lost a significant amount of use of his arms as well as lost a bit more usage of his legs. His arms are usually very strong. He was admitted to the hospital and tests were run. At first they thought from what I described to them that he had anterior spinal cord syndrome.

After doing an MRI they found out he does have a spinal cord injury but it’s the central part of the cord. I also found out that Kyle has a narrow spinal cord as well. Right now the few things Kyle had been able to do that he enjoyed he isn’t able to do at all anymore.

He’s wearing a brace on his neck and is going to need to have extra therapy than what he gets in school when he’s there. They say that he will recover but we don’t know if it will be to his full potential. I’m so hoping to be able to see my boy grasp his Tigger and his maraca again. He so loves those two toys. In a few weeks time we will be seeing the neurosurgeon who read the MRI results for a checkup and will continue to do so.

He’s regained a bit of usage of his arms and has been able to move them around a bit more. He’s also trying to do some of the other things but we have a very long road ahead of us.

Loren Bauer
Illinois, USA

David, Age 20

Our son, David, has spinal stenosis and had a spinal cord contusion (bruising and swelling of the spinal cord) due to a wheelchair accident. He was in a rehabilitation hospital for two months and then in outpatient therapy for another year. He did recover some function, but not what he had before. He still continues to slowly get more function back in his hands and that has come back better than the leg strength. His spinal cord injury was in the cervical area (maybe a little higher than your son's). Don't lose hope! It's taken a long time, but David has gotten back a lot more function than the doctor's told us we could expect. It's just taken a long time and a lot of patience on our part not to just do everything for him. He can use a fork and spoon again and play his hand drum which he loves. He can hold a pen or crayon and make a mark with it. He also was able to regain continence which he had lost. This was a very big thing for him because he hated wearing diapers. We have to help him transfer to the toilet, but he is able to use it by himself. We also had to watch for skin breakdown with the lack of mobility, so watch that he is being turned and repositioned frequently.

Mary Painter
Georgia, USA

Curt, Age 37

Our son Curt also had the spinal stenosis in the cervical area. He fell out of a chair at his day program when he turned to look to see who was coming into the room. He lost use of both hands and one leg was partially paralyzed. It took me being persistent with our local ER doctors and then I took him to Duluth where there were neurologists on staff. They really didn't do much until I insisted that they do a MRI or CT scan. The neurosurgeon said it was my persistence and knowledge of Curt's abilities and body that convinced him to do the tests. They found that he had a bruise of the spinal cord in the cervical area. They gave him steroids to reduce the swelling and referred him to the Twin Cities. He had a cervical laminectomy. They opened the spinal canal more through surgery and implanted metal clips to hold it open.

He gradually regained full use of his arms and legs. He had a second surgery of the cervical spine due to some slippage, but has recovered well. Such resilience. He continues to have falls and over the years has lost some function and strength in his legs, His scoliosis has gotten worse despite the rods, but continues to be in good spirits and amazing pain tolerance. I am sharing this information because we have somewhat of a success story, and I urge you to advocate and talk frankly with the doctors.

One thing Curt liked to do during recovery was to pop bubble wrap. I bought a big roll and he would try his hardest to pop the bubbles and it helped his dexterity return as well as strength. The therapists thought this was a great thing for him and something he loved to do.

Our prayers are with you and your son. Our amazing children keep surprising us all the time.

Sandy Cheney
Minnesota, USA

Robert, Age 20

Our son Robert was diagnosed with CLS in 1992, when he was 2 years old. He is severely developmentally delayed. Over the years he has had extensive surgery for Scoliosis and he suffers many of the physical maladies common to CLS afflicted individuals.

He has received special care and special educational support his entire life. At age 19 we found a group home with another developmentally delayed girl his age that he grew up with. They seem to sense each other’s presence and are doing well together.

He loves to watch NASCAR, loves to drive in the car on short and long trips. He is very affectionate, despite his lack of language skills. His physical abilities have deteriorated and he is often wheelchair bound.

We have done everything possible to add to his life and visit him often, taking him out on his own once a week for day trips, which he enjoys immensely. His support staff sees that he gets out to special programs almost every day.

Paul & Marilyn Reich
Shavertown, PA

Introducing:

Thanks for Caring!

The following families and individuals have recently made generous donations to the Coffin-Lowry Syndrome Foundation:

Robert and Barbara Kline, Minnesota, USA

Send your donations to:  

Coffin-Lowry Syndrome Foundation

c/o Mary Hoffman

675 Kalmia Pl NW

Issaquah, WA 98027

(U.S. Funds, please)

Donations are tax deductible.  EIN 20-3377465