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Hip Issues (Back arching)

Question

My six-year old daughter with CdLS is exhibiting strange new behaviors. She is arching her back when she is angry. When she does this, her hip seems to pop and make a clicking noise. ItÕs as if she is double jointed. Is this common to CdLS? Is it something that needs to be addressed? I have read the literature and it does not sound like a dislocation or Legg-Clave-Perthes disease, because she is mobile.

Answer of our experts

This is not very common in CdLS and may represent an unstable hip. It would be wise for her to see a pediatric orthopedic surgeon to follow-up on this

Some children with gastroesophogeal reflux arch their back because of abdominal pain. I would double check that she has not developed (worsening) GERD

TR/ TK 7-13-10

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Recommendation(s)

Lower limb abnormalities

R46

Scoliosis and leg length differences need specific attention in adults with CdLS at regular medical check-ups.

Recommendation(s)

Reflux

R32

Consider always gastro-oesophageal reflux disease (GORD) in any individual with CdLS owing to its frequency and wide variability in presentation, which includes challenging behaviour.

R33

Modification of nutrition and proton pump inhibitors (PPI) are the first-line treatments of GORD. Anti-reflux medications need to be used to their maximum dosage. Surgical interventions for GORD should be limited to those individuals with CdLS in whom nutritional and medical treatments have been unsuccessful or airway safety is at risk.

R34

If GORD symptoms persist, endoscopy should be strongly considered whilst an individual with CdLS is still in paediatric care.

R35

Surveillance for Barrett’s Oesophagus needs to be discussed with and decided together with the family, balancing the potential gain in health and burden for the individual with CdLS.

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Please take note that the Ask the Expert service is comprised of volunteer professionals in various areas of focus. Answers are not considered a medical, behavioral, or educational consultation. Ask the Expert is not a substitute for the care and attention your child’s personal physician, psychologist, educational consultant, or social worker can deliver.

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Hip Issues (Back arching)

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