The issue of the "origin"
of a problem behavior is not easily resolved - even for disorders that are clearly organic
in origin. Does this sound strange to you? If it doesn't, stop reading
here. If it does, keep reading - this is a tough topic.
It is a truism that all behavior is
organic in origin - we are all organic organisms and we are the actors who behave and ipso
facto all our behavior is organic. The problem isn't with the truism - it is
with the follow-on belief that if every behavior is organic in origin then every
intervention (or treatment) must also be organic (or medical/pharmaceutical). I
chose PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with
Streptococcal infection) to help illustrate this issue because PANDAS is a new theory
about why some children rapidly develop Obsessive-Compulsive Disorder and/or a Tic
Disorder which holds that this disorder is totally organic in origin. The data to
date, despite this being a new (fewer than 5 years) hypothesis about rapid onset OCD, are
falling into place pointing to a pathology involving a combination of an underlying
genetic susceptibility that is triggered by Group A beta-hemolytic streptococcal bacteria
which produce antibodies that effect the basal ganglia (a structure in the brain) that
results in OCD or a Tic Disorder in pre-pubescent children. Another disorder which
has its origins in the brain and is therefore organic is Landau-Kleffner Syndrome
(LKS). LKS is a rare form of childhood epilepsy which results in severe behavior and
language disturbances. All children who have LKS have a history of abnormal
electrical activity in the brain and about two-thirds have observable seizures.
Both these disorders have a
suspected organic origin (for PANDAS its an infection and for LKS its seizures).
Each of these disorders result in terrible changes in the child's pre-morbid (before the
disease) behavior and overall functioning. In the case of PANDAS you see either
predominantly repetitive motor behavior (Compulsions), perseveration on thoughts
(Obsessions), or involuntary motor movement (Tics). With LKS what you see is a loss
of both receptive and expressive language and in many cases a very significant increase in
aggressive behaviors. The child can literally no longer understand what their ears
still hear and their ability to speak is also severely reduced. There is no
commonly accepted medical treatment for PANDAS as yet. The damage is done to the
basal ganglia which results in the change in behavior. Some have offered antibiotics
as a treatment but the literature indicates that this works only if given early and then
only in some cases, others have offered such radical treatments as total plasma
replacement. These treatments more often than not fail because the origin of the
problems is in the past - the infection caused antibodies which acted on the basal ganglia
and damaged it. The damage has been done and antibiotics do not repair the brain
they merely help the body clear away infections. For LKS there appears to be a
developing standard for treatment - an anti-seizure medication (lamictal, depakene, etc.)
and corticosteroids in combination. In both instances, PANDAS and LKS, the
approaches are medical/pharmacological because the underlying cause is seen as organic.
In the case of PANDAS there is no
established medical treatment that addresses the theorized underlying damage to the basal
ganglia of the brain. With LKS, in many children, the combination of an anti-seizure
medication and a course of corticosteroids in combination results in significant
improvement in the language and behavior of the child. In neither case is the
treatment solely medical. Since there is no medical treatment that addresses the
theorized underlying cause for PANDAS what are we left to do? Behavior Therapy has
offered treatments for OCD and many Tic Disorder since the mid-1970's which are
empirically supported by a wide range of research across multiple investigators in a
variety of countries with all age groups. Wait, how can you use a behavioral
intervention with a disorder that is organic? Are you trying to be mean to the child
- it's not their fault? No, no one is trying to be mean to the child. While
there are some drugs that have some documented efficacy in helping deal with OCD, none of
them has been researched with children with OCD for either efficacy or long-term
side-effects specifically on children. Additionally, for many children such drugs do
not solve the problem. With these facts in mind the question becomes - Do we let the
child go on with these very disturbing (and draining) behaviors or do we try a
well-documented combination of environmental manipulations and training to stop these
problems? So, in the case of PANDAS it appears that even though it is theorized to
be organic there is a significant place for non-medical, purely behavioral, interventions
to alleviate suffering in the children with resulting OCD and Tic Disorders.
On the other hand there is LKS for
which a relatively effective combination of medical treatments appear to have a good track
record. First, let me say that in my experience working with the children (and their
families), with LKS appropriate diagnosis and treatment by a Neurologist specializing in
children and rare disorders is essential. I have seen too many LKS
children who were seen by a generalist neurologist who totally missed the diagnosis - and
on more than one occasion had never heard of LKS. I have never seen a child with
LKS recover significant portions of their language without some form of medical treatment
(almost always the combination of drugs mentioned before). It is also true in my
experience (and there is some support for this in the literature on LKS) that the longer
the delay in seeing an appropriate pediatric neurologist and getting treatment the lower
the chances of significant recovery of language and improvement in behavior for the
child. However, I have also not seen a child recover their language completely (or
nearly so) without focused support from a highly trained Speech-Language
Pathologist. In those children with LKS there is often a pronounced increase in
aggressive behaviors. Even with good medical intervention directed by a well
informed pediatric neurologist these aggressive behaviors can continue (hopefully at lower
intensity) without adequate behavior management in place. So, in the case of LKS
where there appears to be a clear organic cause (seizures in the temporal lobe(s)) and
some growing consensus on treatment (anti-seizure plus corticosteroids) there remains the
need for non-medical treatment as well (SLP and Behavior Management).
Caveats - there is no excuse for the
lack of an adequate medical evaluation by the appropriately trained specialist when
children demonstrate significant changes in functioning. This paper is not intended
to convey any other opinion or recommendation. If your child has severe changes in
behavior (or even mild ones that seem odd or difficult to understand) see your family
physician immediately. It is also my recommendation that if these changes involve
language (its loss or degradation), memory, ability to relate or orient, or involuntary
movements of any kind that you seek a consult and evaluation by a pediatric neurologist
immediately. If the pediatric neurologist tells you that it is not serious then no
harm, but if you do not go ........ Remember that, for at least LKS, delays in
obtaining appropriate treatment appear to seriously reduce the potential recovery for many
children.
Today's Resource Tips: There are
several links under "Rare Disorders" at the top of our "Specific Disorders" page that will help you find additional
information on PANDAS and LKS. Additionally, you may want to go to the LKS home page in the UK, the FOLKS webpage, or to the TEACCH page on LKS.
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