I am adopting a 3 ½ y/o child from Russia. From a parent's point of view, this child looks pretty normal yet his medical record is full of scary diagnoses. Can you explain what these diagnoses actually mean and do they really mean something or can they just be dismissed as just non-relevant medical jargon?
I must agree with you. Many times I view a video and the child looks great yet when I review the medical records it is full of medical diagnosis that sometimes scare me as a physician. It is because of this reason that I became interested in children that are internationally adopted. I remember the first IA evaluation that I performed on a child who came from Russia. . This prospective adoptive mother came to my General pediatric office, very happy that she had received a referral of this beautiful 14 month little boy. She presented to me her medical record which was laden with words like, perinatal encephalopathy, pyramidal insuffiencey, and Vegeto-vascular syndrome. After reviewing the case, I felt terrible because I thought that this child according to Western Medical teaching may have been diagnosed with Cerebral palsy, and how was I going to tell this happy woman that this child was suspected of having severe brain damage.
It was only after I reviewed the video that I had realized that this child does not look like a CP patient at all and nothing on the record really made sense. I told the mother although this child looks very good on the video in terms of developmental milestones, I find it hard to ignore the term Perinatal encephalopathy.
I was confused and I let her know that. She told me not to worry because she feels that this little boy is meant to be hers and that all International adoptions are generally a leap of faith. I was dumfounded by these records so I just used my medical reasoning and my gut feeling to say that the child looks good despite what the records actually state. I am happy to say that little Christian today is 8 years old and doing great, walking, talking, and running just like all the little boys in his mainstream classroom.
In this article I would like to try to explain some of the common diagnosis found on the Russian medical records and what they actually mean. I would like to reiterate however that even though these terms appear commonly on many of the abstracts they should not be easily dismissed just because they are common. Each child should have the records and video evaluated by a doctor with and interest and experience in International adoption.
The IA Doctors role is not to tell you which child to adopt or not to adopt because this is an unrealistic expectation because they are unable to physically examine the child. The IA Doctors role is more of an parental educator for the adoptive families. They need to explain all diagnosis, examine the video for milestones and any strange facial features. These things need to be explained in simple terms and all questions need to be answered. Once the family has a thorough understanding of the child's medical condition, then the family can take a calculated leap of faith.
1) Abnormal chordae (trabeculae):
Extra muscle tissue in the wall of the heart, sually the left ventricle This feature is found with the help of an echocardiogram of the heart. This is an "incidental finding;* it does not cause any symptoms or medical disease.
2) Intestinal Dysbacteriosis:
Loose or diarrheal stool following lack of breast-feeding, illness or a course of antibiotics. This occurs secondary to changes in the normal bacterial flora of the intestine. Treated first with an antibiotic to decontaminate the gastrointestinal tract and then with "ferments and enzymes," similar to our treatment with lactase (milk sugar enzyme) or lactobacillus.
3) Hyperexcitability (neuro-excitability, neuro-reflex irritability) syndrome:
Similar to muscular dystonia but diagnosed within the first 3 months of life. Noted when the infant has marked reactions to" stimuli (such as being moved or disturbed), especially if tremor, increased newborn reflexes, trembling chin or frequent belching is present. It may result in movement disorder at an older age. In the U.S.A we do not make mention of this and just state that they are normal newborn reflexes.
4) Hypertension- hydrocephalic syndrome:
Clinical diagnosis based on one or more criteria alone or in combination:
May be confirmed by ultrasound of the brain looking for dilation of the ventricles medical pathology occurs when these ventricles become enlarged because of accumulation of this fluid in the brain, thus causing a very large head. Considered in most children to be a transient condition secondary to the birth process. Treated with certain vitamins, diuretics, and/or other drugs to improve blood flow to the brain. Surgical shunting is very rare, but if it is required then true brain pathology exists.. The condition is considered to be "subcompensated" when the child still has some minor signs or symptoms but is doing okay. It is "compensated". when there are no clinical signs except perhaps for a head slightly out of proportion with the rest of the body, at this point the child expected to be normal.
Short stature or growth delay without any other medical problems, usually genetic or "constitutional." Also used to refer to under-development of any organ such as a limb, the testis, an eye, etc.
Weight lower than expected for age. May be further described as mesosomatic or microsomatic, harmonious or dysharmonious, depending on changes from previous growth and the relationship to the height and chest circumference.
7) Hypoxia of the newborn:
Lack of oxygen at or before delivery, usually diagnosed if it was a difficult pregnancy, labor or delivery, if the baby needed resuscitation at birth or if there was any specific abnormalities are noted in the placenta or afterbirth. When severe oxygen deprivation occurred, words like "asphyxia" are used. "Prenatal hypoxia" is a vague term, sometimes linked with the wording "non-specific intrauterine infection" to explain away low weight or asymmetric reflexes or tone in a full term baby.
8) Hypoxic (metabolic) cardiopathy:
A clinical diagnosis, sometimes confirmed by "metabolic, changes in the EKG." This refers to any number of mild changes in circulation such as perioral cyanosis (blueness around the laps or nose), irregular heartbeat, mottled skin, anemia or rickets. This is a transient condition which resolves when me underlying condition is treated. Term may be used for more serious conditions such as myocarditis or infection of the heart.
9) Increased seizure readiness syndrome:
When a child has an evaluation for suspected seizures or some other problem, an EEG of the brain may be done. The term is used to describe the finding of an abnormal focus on the EEG or when a child has increased muscle tone not related to cerebral palsy. Usually no treatment is given.
10) Minimal brain dysfunction:
Used variably to describe transient neurologic conditions such as abnormalities in the reflexes or "soft" neurologic signs such as hyperactivity or short attention span. It may mean what we in the USA diagnose as ADHD. If there are any suspicious facial features of fetal alcohol syndrome, this associated diagnosis will make FAS more likely.
11) Movement (motor) disorder:
This is a result of muscular dystonia, usually manifested as a delay in gross motor skills. For example, a 10 month old who cannot crawl has a movement disorder. This is not considered a serious diagnosis in contrast to more severe forms, pyramidal insufficiency or spastic tetraparesis. This is a diagnosis that is used when a child is not "perfect" but no other diagnosis can be made. Mild developmental delay.
12) Muscular dystonia:
Muscle tone is considered to be dependent on the emotional condition of the baby. A normal child should be calm with appropriate relaxed tone. Muscular dystonia is present when the tone is very high (jittery or irritable) or is labile (changes rapidly). This is not a permanent condition but changes over brief time periods (an hour) as the baby's state changes (from sleepy to alert, etc.)
Functional mental impairment, meaning the person is not operating at the expected intellectual level, this is usually not diagnosed until older than 4 years. It may be caused by many different conditions such as genetic disease, head trauma, infection, etc. Ranges from mild mental delay to severe mental retardation. Unfortunately, it spans from minimal learning disability to severe mental retardation.
14) Perinatal (prenatal) encephalopathy:
(Variably translated "perinatal lesion or affectation of the central nervous system," "encephalopathia," and many others.) This is a diagnosis that is given to a newborn when one or more risk factors are present. Either in the medical history of the mother or in the baby which may allow for a poor neurological outcome, but this does not necessarily mean that every baby will have a poor outcome. It is similar to the rule out diagnosis that we make in the USA.
15) Prematurity Classification:
Determined by maternal history and/or a scoring system such as the Dubowitz (same as used in North America). Described as stage or degree:
|Stage or degree||Gestational Age||Weight|
|1||36-37 weeks||2001-2500 grams|
|2||32-35 weeks||1501-2000 grains|
|3||28-31 weeks||1000-1500 grams|
|4||< 28 weeks||< 1000 grams|
16) Psycho-affective respiratory attack:
Breath-holding spells. These are of no medical consequence. If one was to go to a Toys R US in the USA, just look at the child who did not get the toy that he wanted. He screams and cries until he turns blue and then he passes out for a second or two. Parents fear that they were having a seizure, but they actually were not.
17) Pyramidal insufficiency:
Infant considered to be at risk of cerebral palsy because of adverse perinatal history (eg, extreme prematurity or low birth weight) and/or because of abnormal physical examination (eg, increased tone or reflexes, asymmetry of reflexes, delayed development). Usually cannot be confirmed as cerebral palsy until after 12 months of age as some children win improve before then. Usually is apparent by 6 months of age and, if it is going to resolve, disappears by 1 year.
Rickets, bone disease due to lack of vitamin D.
|Stage or degree||Time to develop||Clinical signs|
|1||Weeks||Minimal or nothing at all.|
|2||2-3 months||Delayed development due to bone pain and weakness|
|3||Many months||Marked developmental delay, bone deformation, abnormal skull shape or size, poor muscle tone an strength.|
19) Spastic tetraparesis:
This is a more serious form movement disorder in children less than 12 months of age graded from mild to severe, involving all 4 limbs. In worst case, the child barely moves at alt. If treatment (massage and physical therapy) is started early, this usually easily correctable but some children have persistent neurological findings. If one is to see this diagnosis on the record you should be very suspicious of cerebral palsy. This is where the video is important.
20) Stage of condition:
The progression of a disease
The information and advice provided is intended to be general information, NOT as advice on how to deal with a particular child's situation and or problem. If your child has a specific problem you need to ask your pediatrician about it - only after a careful history and physical exam can a medical diagnosis and/or treatment plan be made. This Web site does not constitute a physician-patient relationship.
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© George Rogu, M.D.
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