Physical Fitness, Cognitive & Behavioral Studies- 2013 Orlando FL Costello Conference

These are my personal notes.  If you want a Microsoft Word Doc copy of my notes please contact me personally.  This is my attempt to share what we learned at the conference… please look for published articles by these doctors here:

Physical Fitness by Dr. Stevenson

  • Scoliosis
  • Pectus Abnormality
  • Bone cysts
  • Hip Dysplasia
  • Flat feet- orthotics in many
  • Tight heel cord 76-82% (over ½ with surgery)
  • Gait (steps per min) is a tiny tad lower than normal but stride length … they have significantly shorter strides
  • Bone Density- osteoclasts hyperactive and increased bone resorbtion
  • Osteopenia

Dr. Leonia from Rome, Italy

  • Vitamin D levels insufficient 3/10, deficient 5/10 and undetectable (because numbers were too small to detect any vitamin D) 2/10
  • Lumbar very decreased
  • DXA Scan study
  • low calcium intake, reduced physical activity, low vitamin D

Dr. Stevenson

Strength study—kids were tested on grip strength with a tool they squeeze with their hand

Costello Syndrome people have higher activity than other RAS syndromes, but has lowest numbers for grip strength

Can physical fitness increase muscuoskeletal findings?  They found weight bearing and resistance training exercise increased BMD of spine in females (more research needs to be done)

Recommends: Evaluation by Physical therapist, encourage physical exercise regimens, evaluation by an orthopedist to identify weakness & strength

Cognitive & Behavioral by Dr. Katzenstein and Dr. Marni Axelrad, Dr. Karen Gripp and Dr. Schwartz

Contact Dr. Katzenstein if you need help writing an IEP for school


  • Expressive vocabulary weakness (being able to tell you what they want to say… they get frustrated because they understand you, but don’t always know the words to respond to let you know)
  • Receptive vocabulary is a strength (understanding language)
  • Remember long term better than short term (example: they can tell you something they did two years ago that you may not even remember, but they have a hard time with remembering to brush their teeth everyday.)
  • Memory is better than expected for given IQ
  • Listening- present words short and to the point
  • Motor skills- adaptive skills- getting dressed, potty training, etc is harder
  • Social skills- strength
  • Independent living skills- weakness
  • Watch for Practical skills (does your child use tools to fix things)
  • Facial memory- strength
  • Recognition of affect (emotions) of others- strength (if they see someone sad, they know they are sad)
  • Seperation Anxiety- 50% male, 33% female—Lower verbal IQ with higher anxiety
  • School Anxiety- 30% boys 5% girls— Lower IQ correlated with school anxiety

At home tips to help:

  • Reassuring
  • Routines & structure

At school tips:

  • Support services & curriculum has to be appropriate for their individual needs (IEP)
  • Reduce impact of limitations
  • Focus on praise & positive feedback
  • Behavior therapy for some
  • Medication considerations for some
  • Exposing more and more to anxious situations helps overcome anxiety

Studies show that Family functioning amongst Costello Syndrome families is very high cohesion and flexibility, high engagement

Parents well adjusted to stress

Siblings well adjusted to stress

G13C have mild, closer to average range- higher IQs

T581- non verbal fluid reasoning

Contact if you need tests for school or help with IEPs

Autism becoming increasingly reported but they don’t see this being true in their evaluations of Costellos. 

  • Younger kids with Costello Syndrome are very irritable
  • Older people with Costello Syndrome are happy and social

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