Some time back I posted to APR requesting suggestions for a "Top Ten" list of problematic medical terms or problems related to interpretation of medical materials supplied to parents. Many thanks to those who replied, and I am sorry that I did not manage to post the responses earlier.

Although I had the matter of Russian medical material in mind, it was clear that common comments from western medical experts are sometimes also problematic. I have included a list of problematic terms with a few comments following each and references to further material where possible.

Western:

"off the charts for height and weight"

Firstly, due to the general poor quality of Russian medical reports presented to western physicians for comment, often considerable emphasis is placed on growth points. "Off the charts" for height and weight means below the 5th centile for these parameters. It is, in fact, rather typical for children in Russian orphanages to fall below the 5th centile for height and weight due to under-nutrition. Typically the trend to gain weight and grow poorly becomes apparent around 6 months of age and continues.

Failure to thrive on a nutritional basis must be distinguished from other possible causes (which are many). A complete set of growth points is desirable to establish the pattern.

"off the charts for head circumference"

By this, western doctors mean small head size (below the 5th centile). Of course small head size may be normal for an individual (after all, somebody must be in the bottom 5% for head size, foot size, and everything else). Western doctors become concerned about small head size because it may indicate more significant pathology such as fetal alcohol syndrome.

There seems to be a definite "rebound" in head size in many adopted children when they come to a family environment. No studies are complete with regard to the questions regarding small head circumference. In particular, it is not known quantitatively the association between small head circumference and long term neurologic prognosis.

It seems reasonable to accept small head circumference as a warning sign, but not as a sole criterion for making a medical assessment. In particular, a full set of growth points should be obtained as well as developmental information from the Russian medical chart, videos, direct care givers, agency observers, etc.

"low birth weight"

Low birth weight may be "normal" for that individual, may be a result of prematurity, the result of intra-uterine disease or of mal-development of the fetus. Fetal alcohol syndrome or fetal alcohol effect must be considered. The additional information as mentioned above is again required before making an assessment.

Russian:

  1. Dates - Medical reports that do not include the dates of various tests and observations are unfortunately rather common. Additionally, there is often confusion related to the US custom of writing M/D/Y rather than the European and Russian D/M/Y. Formal Russian reports, incidentally, follow the convention of D/M/Y with the month written in Roman numerals. To avoid confusion, it is preferable to abbreviate the month as JAN, JUN, etc.
  2. hip dysplasia – this diagnosis is usually presented without elaboration and without explanation of how the diagnosis was obtained. It refers to instability of the hip joint, but without elaboration it is difficult to determine whether the physicians mean instability (very common) or frank dislocation. Usually it is possible to conclude that the child had only a mild instability on the basis of the rather conservative treatments prescribed (massage, etc.)
  3. mother with syphilis – this statement is rather common in Russian medical reports. Due to the frequency of syphilis in Russia, women who receive adequate prenatal care routinely are tested for syphilis during early pregnancy and again at 36 weeks. In the US, the second screening is performed only on "high risk" individuals. Generally speaking, the care of mother and child in cases where the test is positive is very good. Proper treatment in these cases is well established, and a good general discussion of the topic is available from the Wisconsin Association for Perinatal Care at http://www.execpc.com/~wapc/practd.html The most common difficulty encountered in interpreting the Russian medical reports is a lack of detail concerning the precise treatment received.
  4. Perinatal encephalopathy – this diagnosis remains common and troublesome. More detailed discussion can be found at http://www.russianadoption.org/adoptionFAQ.htm
  5. Intracranial hypertension/hypertensive-hydrocephalic syndrome, hypertensive syndrome - this diagnosis is commonly found and is often associated with a series of cranial ultrasounds which are difficult to understand. The main problem is that this diagnosis is easily confused by western practitioners with true hydrocephalus which is a serious disorder. It is not hydrocephalus as understood by western physicians and can usually be placed in the category of "neither helpful nor worrisome".
  6. Use of tranquilizers (and anti-epileptics) – In current Russian medical practice there is great faith in the use of medications that affect the Central Nervous System. These include medications thought to enhance brain function (such as Nootropil or piracetam), sedatives, and anti-epileptic medications. Frequently numerous such medications are prescribed in combination. Dosages are usually not indicated on the medical summaries. The use of anti-epileptic medication does not mean that the child has a true seizure disorder.
  7. Autistic behavior – this diagnosis was mentioned by one of the respondents, but in my experience is quite rare on medical charts. As the term means the same and is used the same way in Russian and in western medical practice, it would be a source of some concern and would require detailed information.
  8. Oligophrenia – This diagnosis persists in Russian medical summaries. It is a vague and unfortunate term. A very good article called "Trajectories of Despair" is available at http://www.adoption-research.org/despair.html on the ARIA site.
  9. Diathesis (various spellings) – this word comes from Greek, and means tendency. As used in adoption medicals, it refers usually to a mild facial rash that is thought to be due to allergy to fruits, sweets, etc.
  10. Lack of comments regarding maternal use of alcohol or drugs – considering the concern regarding the possibility of FAS and FAE, it is interesting how seldom information concerning maternal alcohol use is provided. The reason for this is that the orphanage records seldom contain this information. Prenatal records and hospital records are not transmitted to the orphanage in detail at the time the child is transferred to the orphanage. A similar problem exists when trying to obtain family history. The information is simply not available at the orphanage.
  11. Rickets – Rickets is a common diagnosis, usually followed by the qualifier Stage 1 or Stage 2. With most diseases, Russian medical practice is to consider the mildest form of a disease to be Stage 1 and the most severe degree to be Stage 4. As rickets is so common in Russian orphanages (due to Vit D deficiency), this diagnosis is usually correct.
  12. Spastic tetraparesis; motion disorder; muscular hypertonus or hypertension – these terms are quite frequent and arise from some particular Russian concepts of pathophysiology. They are related to the belief that there is cranial and spinal cord trauma at the time of birth and that this trauma manifests itself through changes in muscle tone. This "disorder" is generally treated conservatively and is considered to have a good prognosis. Confusion arises when western physicians naturally assume that "increased muscle tone" means "spasticity" and become concerned about the possibility of cerebral palsy.

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