Current Practice Caring for children with Down syndrome : a medical checklist

Down syndrome (DS) consists of the largest group of children with mental retardation due to a single recognizable syndrome. Once the diagnosis of DS is made (by the paediatrician, neonatologist or family physician), it ushers in a series of investigations for associated medical problems. This is because in this syndrome almost every system or organ in the body needs special attention. Appropriate interventions, if carried out on time, can reduce complications and improve the quality of life of these children. It is therefore important that all doctors caring for children with Down syndrome are updated with the latest recommendations and are mindful that they should avoid inflicting undue hardships on the family.

(Key words: Down syndrome, medical checklist) Down syndrome (DS) consists of the largest group of children with mental retardation due to a single recognizable syndrome.Once the diagnosis of DS is made (by the paediatrician, neonatologist or family physician), it ushers in a series of investigations for associated medical problems.This is because in this syndrome almost every system or organ in the body needs special attention.Appropriate interventions, if carried out on time, can reduce complications and improve the quality of life of these children.It is therefore important that all doctors caring for children with Down syndrome are updated with the latest recommendations and are mindful that they should avoid inflicting undue hardships on the family.This article presents an age specific preventive medical checklist for use by paediatricians, family physicians and others.Its objective is to improve the health of DS children.The educational aspects have not been included in these guidelines although the care of DS involves families and educators in addition to health professionals.
Usually protocols and medical guidelines are the result of deliberations of committees and experts.I have put together here accepted current practices based on standards stipulated by several recognized medical organizations.They reflect recent advances acceptance by the Down Syndrome Medical Interest Group (UK) and American Academy of Paediatrics in USA.Suitable modifications for local adaptation have been made taking into account availability of expertise and referral pathways.It is hoped that these checklists will constitute a feasible programme of medical care for children and adolescents with DS.In recent years, many treatment modalities have claimed to "cure" Down syndrome.No account of 'current practice' would be complete without these.This information is on the internet and with increasing numbers of parents accessing this source, it is important that those caring for Down syndrome are aware of the truth about these so called "alternative" therapies.

Unconventional therapies
High dose vitamins, supplemental zinc, supplemental selenium, freeze dried fetal cell injections and piracetam (a medication classified as a cerebral stimulant) are among these.Scientific groups interested in Down syndrome have extensively studied these manifold therapies.Their conclusions are that these treatment methods do not improve intellect and have in some cases even proved harmful.As regards piracetam a double blind placebo controlled study on twenty Down syndrome children treated with it found the medication ineffective.
Facial plastic surgery to alter characteristic facial features is another such recommendation.It claims greater social acceptance.This procedure is controversial because faces continue to grow into adolescence.It is therefore not a medically indicated procedure on children and many insurance companies do not pay for this procedure.Neither is tongue reduction surgery recommended because it has not been shown to improve expressive speech.
Shunt operations for AV canal defects and Tetralogy of Fallot are best performed before the age of two years.
• Down syndrome should be written on Child Health Development Record (CHDR) as "Reason for special care".One month -12 months• Cardiology referral is essential by three months (if not carried out earlier).(Thisshould take place even in the absence of a murmur) • Monitor for progressive pulmonary hypertension (even in absence of heart failure).• Routine immunization (same as for well child).*