Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts

Friday, August 20, 2010

Father of ABA, Dr. Lovaas, Passes

I took his passing very hard, much like I did when Bernard Rimland passed a while back. Both of these men founded what is now today most commonly used to treat autism.I was so sad that I didn't know how to put it into words what this man has done for our children. But, a few days later I read an email sent to my support group from our former advocate (she saved us tons of money and time and is also an incredible autism mom herself). Karen Simon says it best:


I'm not sure parents of newly diagnosed kids know of the significance of Ivar Lovaas to all of the ABA programs our kids have today and the idea that a kid can become indistinguishable. We met him often when Christopher was in his replication site in Stockton, California from 1996-1998 and what I loved was how open he was to what needed to be done. He had been saddled with {and still is} the reputation that he was a rigid and single minded man stuck on his original findings and insisting that all therapies be done in this manner. The problem as he told us is that he needed to prove to the naysayers that intensive 1-1 therapy done in a systematic and data driven approach worked and in order to do this he had to exactly replicate his findings of 1987 so more school districts would fund these programs.

What my husband and I found, however, was a kind and caring man who never stopped learning. He encouraged us to get speech therapy, OT , music therapy and even learning the computer although that was new to him . He had a daily physical component to his program which included learning to ride a bike, swim and using all playground equipment. He told us the importance of parent involvement. He had my husband give him. He asked Jim to give him a list of the computer programs and music CD's that we found on the internet that we were using for Christopher so that he could share them with other families. He started the first informal support group among parents of his kids. He NEVER wanted kids to sit a table for hours at a time. His program was very fast paced and fluid and kids were in and out of the chair every 2-3 minutes and many did become indistinguishable and those who didn't did much better as a result anyway.

It pains me that in many ways we are all still fighting this fight even though his is over, but I wanted to share with everyone that this was a man I truly loved for giving me my son back in the days when there was no hope given to any parents of children with autism.

Rest in Peace Ivar Lovaas

Friday, March 19, 2010

Can Strep Throat Lead to Behavior Problems?

Can Strep Throat Lead to Behavior Problems?

Can a bout of strep throat lead to serious behavioral problems like obsessive hand washing or odd tics in children?

Steve Kagan for The New York Times Obsessive hand washing sometimes follows strep infections; are the two related?

The condition, known as Pandas, for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection, remains a controversial topic among child health experts. Dr. Robert King and Dr. James Leckman of the Yale Child Study Center, who recently joined the Consults blog to answer readers’ questions about Tourette’s syndrome, here respond to readers concerned about the link between strep tics and obsessive-compulsive disorders.

Q.

RS from N.J. writes:

If your child shows symptoms of a tic disorder, obsessive-compulsive disorder or Tourette’s syndrome, you should have them checked for strep. Pandas, could be the cause. A simple blood test will tell if your child’s “strep titers” are at an abnormal level.

This can be treated with antibiotics. Worth checking out before you subject your child to psychiatric medications. Not all doctors believe in Pands. But let me tell you, it’s worth finding a doctor who does.

For more info check out the Web site Saving Sammy: Curing the Boy Who Got O.C.D.

Q.

Bethany Brinton from Salt Lake City asks:

The first sign of scarlet fever is obsessive hand washing, hours before the rash; Tourette’s is in the strep/O.C.D. family, or Panda. Why don’t they treat it with I.V. antibiotics and probiotics?

A.

Dr. King and Dr. Leckman respond:

Pandas, or pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, remains a controversial topic for many experts in Tourette’s.

Two recently completed intensive longitudinal studies found little evidence to support the existence of Pandas as presently defined. Since the onset of tics is common in middle childhood and as many as half of young school age children may have strep throat in a given year, the co-occurrence of new tics and a strep infection will happen as mere coincidence, without any specific causal link, in a certain number of children.

Furthermore, since stress, including the stress of illness, can be a cause of tic flare-ups, it is not always clear if or when there is a more specific causal link.

That said, some researchers, including ourselves, suspect that the label of Pandas is probably best reserved for a subset of children with apparently strep-related O.C.D. or tics, and that it is this subset of cases that need to be more intensively studied. Such cases probably fall on a continuum with Sydenham’s chorea and other post-infectious disorders that can lead to an inflammation in the basal ganglia, a part of the brain involved in motor control and learning.

These more narrowly defined Pandas cases appear to have an abrupt sudden onset, over the course of two days or less, and are marked by separation anxiety and obsessive-compulsive symptoms, a loss of writing skills and sleep problems. Tics are often present, but they can also confuse the picture, especially if they had been present in some form prior to Pandas onset.

The overuse of antibiotics has its hazards, both for individuals and communities, including allergic reactions and fostering the development of antibiotic-resistant strains of bacteria. Hence, antibiotics — and certainly intravenous antibiotics — are not indicated for the typical case of tic disorder but should be reserved for cases where there is clear-cut and convincing evidence that the onset or recurrent flare-up of tics/O.C.D. is linked to strep infection.

Although there is at least one well done study that supports the use of intravenous immunoglobulin for well-defined Pandas cases, this work needs to be replicated. Plans are now under way for such a replication study in a carefully defined group of children who meet the narrower criteria described above; the study will again be performed at the National Institutes of Health’s Clinical Center in Bethesda, Md., by Dr. Susan Swedo, who first coined the term Pandas more than a decade ago.

Q.

mlw from Brooklyn asks:

What percentage of children could be misdiagnosed as Tourette’s and actually have Pandas?

A.

Dr. King and Dr. Leckman respond:

Another great question. Once we have a reliable and valid way of making a diagnosis of Pandas, we should be able to provide an answer.

As noted above, there is much controversy as to whether Pandas exist and, if so, how should they be defined. At present, in making a Pandas diagnsosis, we focus much more on the sudden, abrupt onset — unusually in less than 48 hours — of severe anxiety, obsessive-compulsive symptoms, sleep problems and behavioral regression and a marked deterioration of writing and drawing abilities. Tics may be present, but they are probably not a key feature.

I am happy to see a major newspaper covering this again. My BFF told me about Saving Sammy, a must read. It's fascinating how the medical community continues to be divided over the viability of a P.A.N.D.A.S. diagnosis. Must be about money. Or the fact there is no one-size-fits all. When will they get there is no such thing?