One of the more challenging aspects of SLOS are the constant battles with behavior. Almost all of those with SLOS show some signs of Autism, some being diagnosed with the secondary syndrome. It appears that the sooner cholesterol supplementation is given, the less likely an actual Autism diagnosis will be made, but autistic tenancies can be found in almost all cases. Behavior can range from screaming, hitting, pinching, and biting, to head banging, to self-mutilation. It is not always known what causes the behaviors, but the inability to communicate seems to play a factor in many cases.
There are many things parents can try before resorting to medication, but it requires some investigation to try and figure out why the behavior is happening, which may take some time. Working with a behavioral specialist can help.
Common Behavior modifications include:
- Increased focus on communication
- positive reinforcement not negative reinforcement. For example when a child is quiet, tell them that is good being quiet. Don’t respond to the screaming which gives them the attention they are looking for.
- punishment. Contrary to most beliefs of what punishment consists of, this may be as simple as making a child endure an untucked shirt if they like things neat.
- time outs. Keep in mind though that SLOS children can’t handle as long a time as most children can.
- reward systems
- pressure, such as bear hugs or pressure on shoulders
- Resperdal (controls screaming)
- Adderall XR (also for ADHD)
- Vistaril (aka Atarax or Hydroxazine – calming med, also for sleep)
- Tenex (became zombie like)
- Zoloft – Caused tremors in some. Helps depression and sleep
- Paxil (caused violence in some)
- Halaperadol (Not a good choice; causes eye problems)
- Amitriptalyne (antidepressant, but makes young kids not so tense)