On the European Conference on Rett Syndrome, held in October 2010 in EDINBURGH Dr. Sarojini Budden (Portland, Oregon) had some tips for parents and caregivers. She has worked with many Rett girls over many years. Her presentation provided the following tips:
- There has been increased identification of reflux, gallstones, and fractures as the reason for pain and discomfort in girls.
- If there is obvious pain around meal time, it may indicate reflux or gallstones. 11% of all girls had gallstones (between 8 and 22 years of age). Girls should have ultrasound scan for gallstones, but, even if this shows negative, parents should pursue a HIDA scan, which can evaluate whether the gallbladder is diseased. Alan Percy, Prof. of Paediatric Neurology at Alabama, USA, confirmed that this is essential, and has been required in a number of cases.
- Standing should be extended to at least 30 minutes to 1 hour daily – beneficial in the fight against scoliosis (together with calcium and vitamin D in the diet), excessive wind, constipation (together with fibre / vegetable diet)
- Sitting - methods of sitting should be explored that could be beneficial to the spine
- Physiotherapy is vital. Daily stretches should maintain the range of movements of the muscles and joints. Local physio should suggest types of stretches and for how long.
- There is incidence of leg length discrepancy, which should be checked, in case correction is required for standing or walking
- Girls have shown potential for improving skills, e.g. hand function
- Siblings reactions are very important
- PLEASE keep talking to the girls