Articles on adoption, foster care, & pediatrics

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Fetal Alcohol Spectrum Issues

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Since prenatal alcohol exposure is a concern that arises so frequently in our preadoption consultations, we've created this page as a resource for families grappling with the alcohol issue. Our experience in this field comes from working at the FAS clinic here at the University of Washington, evaluating and following many alcohol-exposed internationally adopted kids, and volunteering with older orphanage-raised children in Moscow.

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Unfortunately, a study found that 60% of pregnant women in Russia reported drinking during pregnancy, with 8% reporting at least one binge drinking episode during pregnancy. Since these were women that were actually receiving prenatal care, the rates and amounts of prenatal alcohol exposures for children in orphanages are likely to be significantly higher, as those pregnancies do not tend to be supervised. The rate of FAS in Russian orphanages have been estimated at 1-10 per 100, and the rate of alcohol-affected kids is even worse. That’s a lot higher than in this country, where it’s thought to be 1-3 per 1000. Alcohol is also a major concern in other former Soviet Union countries, and is an emerging issue in many other countries.

So … what is fetal alcohol syndrome?

FAS is a permanent birth defect syndrome caused by maternal alcohol consumption during pregnancy. The full FAS diagnosis requires all of the following: growth problems before or after birth, a pattern of minor facial anomalies, evidence of altered brain structure or function, and prenatal alcohol exposure. There is an associated increased risk of eye, hearing, heart, and other associated defects, but those aren’t part of the diagnostic criteria.

What about PFAS, AFAS, FAE, ARBD, ARND, ND-PAE etc etc etc? Partial FAS, atypical FAS, fetal alcohol effect, alcohol-related birth defects, alcohol-related neurodevelopmental disorder, and other names have been used to describe children that seem to be affected by prenatal alcohol exposure but are missing one or more of the four FAS criteria. We use the umbrella term fetal alcohol spectrum disorders (FASD) to describe the range of fetal alcohol diagnoses. FASD includes children with FAS as the “tip of the iceberg”, but also alcohol-affected children with fewer or less severe features of FAS.

We know that alcohol can damage the developing fetus, but the effects of alcohol are quite unpredictable – we’ve seen fraternal twins where, given the same mom and alcohol exposure, one has FAS and the other seems fine. There seem to be unidentified protective and risk factors for mom and babies that make predicting the effects of alcohol exposure very hard to do. No amount of alcohol exposure has been proven to be safe, but heavy and repeated binge drinking is highest risk. We also worry more about older moms and later pregnancies, because they seem to produce kids more affected by alcohol, perhaps because alcoholism is further along in those pregnancies. Involuntary termination of parental rights can also be a clue to social dysfunction and alcohol abuse.

Growth

Let’s look at those 4 FAS criteria, starting with growth. Children affected by prenatal alcohol exposure can be unusually small in weight and/or height, at birth or later. Many show some catch-up in growth by adolescence. Of course, many other adverse influences common to adopted children (maternal stress or illness during pregnancy, prenatal tobacco, malnutrition, neglect, orphanage factors) can impact growth as well. We count growth deficiency towards an FASD diagnosis if the growth is not better explained by other factors, and look at the catch-up growth pattern in the first year home to help us tease out environmental versus prenatal causes. Children who are unusually small compared to others raised in similar environments are at higher risk for developmental and behavioral challenges after adoption.

Facial Features of FAS

What about the facial features? An overly long list of features associated with FAS has piled up over the years, but there are only three features that really count – a thin upper lip, a smooth or absent philtrum (vertical groove between the nose and lip), and small eyes. The face of FAS requires all three of these to be abnormal, and the diagnosis of full-blown FAS requires the face. Unfortunately, since that face gets “created” on only 2-3 days in early pregnancy, there are moms who drink heavily whose kids can be quite alcohol-affected but don’t have the face of FAS. Not having “the face” does not rule out alcohol exposure and effects. But having “the face” dramatically increases your risk for FAS and its associated disabilities.

The other things you’ll hear about - big cupped ears, “clown eyebrows”, wide-spaced eyes, epicanthal folds (“asian” eye appearance), flat nasal bridge, short upturned nose, flat midface, small chin, etc - are not necessarily caused by alcohol exposure. They can be developmental (most babies have short upturned noses), ethnic, or just minor anomalies unrelated to alcohol. We do see them more often in alcohol-affected kids but the thin lip, smooth philtrum, and small eyes combination is more reliable and specific for alcohol damage.

We can often get a decent look at the lip and philtrum from referral photos and videos. That’s two of the three features, and if both are abnormal then we get concerned. If you have a thin lip and smooth philtrum, plus microcephaly (small head), and strong suspicion of alcohol exposure then I’m usually quite worried about damage from alcohol. If we've been relatively happy with the lip and philtrum but have asked to see some trip photos, you might be able to skip the sticker part, but the following photo tips will still be helpful.

FAS Facial Photographic Analysis

In more borderline situations we might need eye measurements. The size of the eyes (measured from the inside to the outside of the visible part of each eye) can only be accurately measured with a specialized photograph, one that you can take on your trip and email to us for computer analysis. Here’s how to take that photo …

The key here is an internal measure of scale – you’ll need a small round sticker 1/2 to 3/4 inches in size, which you can get from an office supply store. Homemade stickers or pieces of tape are not helpful, as they are of variable width. Mark the width in magic marker on the sticker - this is important, as we must know the width of the sticker. Place it on the child’s forehead between the eyebrows … yes, they will look at you funny when you do this, and you want to be sensitive to staff and older children’s feelings. Put some stickers on your own face if you want to goof off, give out extra stickers, and if you can, print/send/bring a nicer smiling photo to the child as a memento. Again, we only need the sticker if the lip or philtrum is worrisome.

Use a digital – polaroids aren’t good enough. Take a closeup facial portrait photograph so that the head fills the entire frame (use zoom if need be, but watch the focus), from about 4 feet away. When looking at the face in the viewfinder you should be able to draw an imaginary line from the ear canals through the bony ridge below each eye (lower orbital rim). That makes sure the child isn’t looking up or down. There also should be no left-to-right rotation – make sure both ears are equally visible.

The facial expression is important – smiles or frowns can really distort the features and make a nice thick upper lip and deep philtrum disappear. No smiling! We need a relaxed facial expression with lips gently closed, eyes wide open, and no eyeglasses. For older children, ask them to look at your nose, and breathe through their nose - this often relaxes their expression.

Asking the child to look up with their eyes (“what’s on the ceiling?”) without tilting their head up will help the eyes be wide open; for younger children ask someone to wave something just above your head. It may well be that one photo gives a good look at lip and philtrum, and another one gives us eyes wide open, so keep trying. Please review your photos on the camera screen before packing up, as we get a lot of out-of-focus or otherwise less than useful photos.

A “3/4 view” halfway between frontal and side view is also helpful, especially if you have a centrally mounted flash that can wash out the philtrum in frontal photos. A profile view may also help. One last tip is to use your digital camera’s “video clip” function to capture a brief, very upclose view of the face as it moves through different angles – we can pull frames from this video clip that may capture the true lip/philtrum better than a still photo. If you want more information about the photographic analysis, visit our FAS clinic's website. You can also print out instructions for taking screening "sticker" photos for FAS, and view a video animation of proper camera alignment.

Sounds complicated ... but we do this routinely in our clinic, and have a lot of success even with older infants and toddlers. We've found that parents really are able to do this themselves, especially if they practice a bit in the hotel room. Have fun, and good luck!

How Alcohol Affects Brain Structure and Function

Enough about the face … what about the brain? That’s what we really care about, after all. In fact, a lot of young kids with the FAS face are really cute. We can look at the brain structurally by plotting the head circumferences on a growth chart. You should measure the head circumference yourself if there has been any concern – bring a non-stretchable measuring tape, and practice a bit first. Wrap the tape snugly around the widest possible circumference - from the most prominent part of the forehead (often 1-2 fingers above the eyebrow) around to the widest part of the back of the head. Remeasure it 3 times, and take the largest number.

Microcephaly (head circumference less than 3%, or “below the growth chart”) can be evidence of brain damage from alcohol. It’s one of the few things we have to predict later brain function in infants and young toddlers, because meeting early motor milestones does not rule out difficulties later on with learning and behavior. In fact, a lot of the functional disabilities from alcohol damage aren’t apparent before school-age. The lack of concrete predictions about alcohol effects is a constant frustration in this process ... it really is a "time will tell" issue, unfortunately.

“Typical” (in quotes because the outcomes are so variable) functional impacts of prenatal alcohol exposure include problems with inattention and impulsivity (ADHD-like behaviors, sometimes not as responsive to medications), lower IQ scores or mental retardation, math and other specific learning impairments, “executive function” difficulties (the higher-order brain functions that plan and organize how you solve problems), trouble with cause/effect, social and communication challenges, coordination problems, sleep difficulties, and so on. Alcohol commonly affects multiple domains of brain functioning. Teasing this out can require wide-ranging testing by professionals familiar with alcohol effects. Many kids aren’t identified early enough, and are labeled as “difficult”, or “just doesn’t get it”, or other labels that don’t help. Accurate diagnosis as early as possible helps these children.

Raising Children Affected by Alcohol

While these difficulties are usually lifelong, this is not a hopeless diagnosis. Consistent, patient, loving, “industrial-strength” parenting with tons of structure, and appropriate expectations and supports in school can really help kids affected by alcohol reach their full potential. That potential will be limited by alcohol-related brain damage but setting the bar at the right height, and identifying what they CAN’T versus WON’T do can really help them have success in their life, and hopefully prevent some of the “secondary disabilities” of depression, acting out and aggression, victimization, troubles with the law, and especially their own substance abuse potential.

Resources for Caregivers

We have an FASD Resource List with internet and book references that will help give you a better sense of the range of alcohol effects, and what it’s like to parent a child affected by alcohol.

Resources for Educators

Here are 3 free, downloadable PDF guides for educators (also very useful for parents, who often have a lot of advocacy to do at school):

Teachers can find more practical strategies in the do2learn Teacher Toolbox.

Glossary of Russian Medical Terms

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Original list of terms by Jerri Jenista, MD; some drug definitions from Karen Hauff, Pharm.D; updates and intro by Julian Davies, MD

Big thanks to the original authors for their gracious permission to adapt and publish this list, for the pioneering work of Dr Jenista and the staff of the International Adoption Center, and the counsel of our colleagues in Russia and on the Adoptmed listserv of adoption medical professionals.

It should be noted that we are not Russian doctors, nor were we trained in the mysterious art of Russian neurology, so take this for what it is: a glossary of medical terms found in Russian (and Ukrainian, and Kazakh, and other former Soviet Union) medical charts based on the interpretations we've collected over the years. Other definitions for many of these terms exist, they are not always used consistently (or translated accurately), and the degree of concern over these diagnoses will vary based on other factors in a child's history.

We would urge you to discuss the specifics of a particular referral with an international adoption specialist who can incorporate these medical terms into the context of a child's growth, development, physical features, and signs of more familiar Western medical conditions.

Why so many neurologic diagnoses in Eastern European referrals? Some possible reasons:

  • Russian medicine tends to list issues that we might consider "risk factors" or "things to watch for" as diagnoses (thus, lack of prenatal care can become "risk for intrauterine infection")

  • many diagnoses are provided by specialists and hospitalists, notoriously the neurologists, many of whom seem to have "favorite diagnoses", and incentives to overdiagnose in general

  • a persistent Soviet-era pessimism about the birth process; even with a (to us) healthy delivery they are quite worried about interruptions of blood and oxygen to the baby's brain, kinking of the spinal cord, and so on ... their descriptions of the birth process (and occasional interpretations of newborn spinal xrays) can leave one marvelling that babies are born with their heads still attached

  • a tendency to interpret what to us are normal, immature newborn behaviors (startle reflex, trembling chin, mottled skin, belching, etc) as signs of neurologic damage

  • and a subsequent tendency to ascribe what we might call normal infant maturation to recovery from neurologic illness, thanks to massage, medications, supplements, and other typical treatments

  • when it comes to orphanage-raised children (who, admittedly, do come from higher-risk backgrounds), there may be a bit of cultural pessimism about outcomes

Or, on the 'flip' side:

  • "Sometimes they diagnose just to show they care ..."

  • "It's all just a big jobs program for Russian neurologists."

  • "This diagnosis, in Western terminology, means that the child was born in Russia."

  • "It's the 'shotgun' approach to diagnosis - if you label all the children with neurologic impairments, you can rest easy that you haven't missed any of the actual diagnoses."

An article just published in Lancet sheds some light on the practice of pediatrics in Russia, Kazakhstan, and Moldova in a systematic review of hospitals. Essentially, the pediatricians are found to be dedicated and proud of their work, but hampered by antiquated, unproven protocols that over-diagnose, over-test, and over-medicate young children, not to mention the outdated or missing diagnostic equipment and treatment supplies. Kids languish in hospitals far too long for minor illnesses, and in the case of orphans, typically receive very little stimulation (we've found that children often do worse in hospitals than orphanages). Children are routinely prescribed "large numbers of ineffective or dubiously effective treatments" (avg of 5 at a time in Kazakhstan) for vague indications, without adequate monitoring of potentially dangerous side effects.

Medical anthropology aside, orphanage doctors naturally have a good deal of experience with orphanage-raised children, and it can be very helpful to seek their opinion on how a child is doing. Sometimes they are stuck with diagnoses from other medical settings (see above) that they are not as concerned about, or can provide useful information on trends over time.

A brief note on cerebral palsy: It's remarkable how much time we spending talking and thinking about and trying to rule out CP in Russian referrals ... when in fact we haven't had more than a few Russian (and Kazakh and Ukrainian) children that arrived here in the past few years that turned out to have significant CP.

Not that we're going to stop asking followup questions about muscle tone trends, and rate of development, and if there are current concrete neurologic concerns, or flat-out "does this child have CP?" ... but I think it probably deserves much less anxiety than it gets. The Russian docs seem to do a good job recognizing cerebral palsy, or we do, or it's just not that common, compared to orphanage-related delays, transient dystonia (periods of higher or lower muscle tone in infancy that resolve), low tone and strength from lack of stimulation or mild rickets, and other issues that get better with time, stimulation, and nutrition.

Not that we don't see kids with neurologic and developmental issues ... but we see a lot more language delay, poor motor planning, sensory issues, fetal alcohol spectrum concerns, insecure attachments, learning problems, ADHD, etc than we do cerebral palsy. And CP can certainly be a milder disability than some of the above.

On that note, without further ado ... here it is, the evolving glossary of Eastern European medical terms and treatments:

Abnormal chordae (trabeculae): Extra muscle tissue in the wall of the heart, usually the left ventricle (lower chamber). Typically found by routine echocardiogram of the heart. This is an "incidental finding" - it does not cause symptoms or disease.

Abominum: Antispasmodic used in the treatment of gastritis and colitis.

Abstinence syndrome: Newborn withdrawal syndrome (or NAS), usually from narcotics.

Actovegin: Calf's blood extract used by Russian doctors and Tour de France cyclists to improve oxygen-carrying capacity.

Adiposogenital syndrome: Freohlich's syndrome, i.e., truncal obesity with hypogonadism and short stature in boys. Sometimes used (incorrectly) to describe obese boys with delayed sexual maturation.

Alcoholic fetopathy: Fetal alcohol syndrome.

Alienist: Psychiatrist.

Alimentary subnanism: Short stature due to malnutrition, illness or other medical problems past the first year of life. Also called hypostatura in younger children.

Alpha tirroxinum: Thyrotropinum, thyrotropin or TSH.

Aminalon (gamma aminobutyric acid): An antihypertensive medication to decrease pressure in the brain.

Ampiox: Antibiotic combination of ampicillin and oxacillin.

Anamnesis: Medical history.

Ankyloglossia: Tongue-tied.

ARVI: Acute respiratory viral illness (a "cold").

Asparkam: Potassium-magnesium combination used for cardiac arrhythmia.

ATP: Adenosine triphosphate, a coenzyme to improve muscle contraction.

Australia antigen: Also written as HbsAg. Hepatitis B surface antigen, marker for current infection.

Baclofen (Baclon): Drug used to treat spasticity such as that seen with cerebral palsy or spinal cord trauma.

Baktysutil (?): see Orobicin

Bendazol (dibasol or tiabendazole): A vasodilator.

Bilary dyskinesia: Functional problem with the motility of the biliary tract, often (over)diagnosed from ultrasound examinations. 

BL: Test for the causative bacterium of diphtheria.

Brulamycin (tobramycin): Aminoglycoside antibiotic.

Calcium orotate (calcium salt of orotic acid): Used in the treatment of hyperuricemia and hypercholesterolemia; also used to treat liver disorders.

Cardiopathy: Any functional condition of the heart, e.g., rapid or slow or irregular heartbeat, heart murmur, poor heart function. Often transient and nonspecific.

Catarrhal otitis: Middle ear inflammation (redness only) without pus, accompanied by an upper respiratory tract infection. The condition American pediatricians call otitis media (redness of the ear drum with pus) is called "purulent otitis."

Cavinton (vinpocetine): Used to treat cerebrovascular and cognitive disorders.

Cefamezin (cefazolin): First-generation cephalosporin antibiotic.

Cefamid (cephradine): Semisynthetic cephalosporin antibiotic.

Cerebro-asthenic syndrome: Same as neurasthenic syndrome.

Cerebrolysin: Porcine brain extract used to treat nervous system disorders.

Cinnarizine (Sturgeron, Midronal): An antihistamine drug used to control vomiting by decreasing pressure in the brain, also to selectively dilate brain blood vessels.

Citral solution, citric acid solution: Used to relieve flatulence and pain; ingredient found in herbal remedies used for a variety of disorders.

COE: ESR - erythrocyte sedimentation rate (a marker for inflammation of infection).

Colpitis: Inflammation of the cervix or vagina.

Corvalol: Phenobarbital-containing OTC medication.

Complamin (xanthinol nicotinate): Used to treat hypercholesterolemia, peripheral arterial disorders; cerebral circulatory and metabolic disorders; retinal vascular disorders; Ménière’s disease and hearing disorders.

Coprogram: Stool examination.

D=S: Dexter=Sinister, that is, the right equals the left. Usually referring to muscle tone or reflexes in the extremities.

Diamox (diacarb, fonurit, acetazolamide): Diuretic drug (carbonic anhydrase inhibitor) used to decrease pressure in the brain, sometimes to help control seizures.

Diaphanosopy: Examination of any body part by transillumination (shining a light through or against it).

Dibasol (bendazol): Vasodilating drug.

Dropsy of the testicles: One of my favorite "lost in translation" diagnoses. It means hydrocele, which is a benign fluid collection in the scrotum that resolves with time.

Dysbacteriosis: Loose or diarrheal stool following lack of breast-feeding, illness or a course of antibiotics. Due 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 probiotics (live cultures found in yogurt).

Dysmetabolic nephropathy: Secondary impairment of kidney function following a insult such as malnutrition. There is no structural damage to the kidney. Most cases are reversible once the underlying disease is taken care of.

Electrophoresis: Method of giving medication. Substance is applied to the skin, usually over the affected part, and then a mild electric current is run through is.

Encephabol (pyritinol): Used to treat rheumatoid arthritis, cerebral insufficiency, organic brain disorders, migraine and trigeminal neuralgia.

Epicrisis: The word means "time period." It is used in two different ways.

*When a patient is admitted to the hospital. Written summaries of the condition and progress are made at admission, at about 10 days and at discharge. These are referred to as epicrisis.

*Developmental progress is codified by the skills which are typically achieved in a certain time period or epicrisis. In the first year of life there are well child check-ups at 1, 2, 3, 6, 9 and 12 months of age. Each visit encompasses an epicrisis from the previous point. As the child gets older, the epicrisis periods are longer usually 6-month intervals. Thus a 9 month old who is "delayed 1 epicrisis" has the expected development of a 6 month old.

Euphyllin (aminophylline): Bronchodilator, for wheezing or asthma.

Exudative diathesis: Skin rash usually attributed to feeding problem, especially food allergy, or a drug reaction. The skin is usually red and dry; the child may scratch until it oozes or bleeds. If the rash persists for months or is very severe, it may be considered eczema.

Ferrimed (vitamin B substances, iron polymaltose, folic acid): Used in the treatment of iron-deficiency anemia.

Furagin (furazidin): An anti-infective agent.

Furanthril or Furantral (furosemide): Loop diuretic.

Gestosis: Morning sickness. Sometimes the term is used (incorrectly) to refer to toxemia or pre-eclampsia manifest in the mother during pregnancy by protein in the urine, edema (swelling), high blood pressure and, rarely, other neurologic problems.

Glutamic acid: A dietary supplement.

Grefe symptom: "Sundowning" of the eyes (sclera is visible above the iris when the eye is open but relaxed) sometimes indicating hydrocephalus.

Growth: Classified by percentile as on North American growth charts. Average or normal growth is considered to be between the 25th and 75th percentiles for age and sex. Growth patterns:

Harmonic: Height, weight and chest circumference are all at or near the same percentile.
Dismarmonic: One of height, weight or chest circumference is markedly different in percentile from the other parameters.
Mesosomatic: Height, weight and chest circumference are all average.
Microsomatic: Height, weight and chest circumference are all low.
Macrosomatic: Height, weight and chest circumference are all high.

Gypotrophy: Same as hypotrophy.

Health group : Classification of children's health condition. Groups I-III are considered basically healthy children, although treatment may be necessary. Sometimes an A or B is appended; certain diseases belong to these A or B subgroups. These health groups are pretty vague and inconsistent, in our experience.

Group I: Absolutely healthy (unusual to see on orphans records or any records, for that matter)
Group II: Minor problems such as enlarged tonsils or a mild chronic condition such as gastritis with no symptoms.
Group III: A chronic condition with frequent exacerbation, for example, asthma under poor control.
Group IV: Severe health condition with some degree of disability.
Group V: Physical handicap such as a missing extremity

Hyalase, Wydase (hyaluronidase): Adjuvant to increase the absorption and dispersion of other injected drugs or for hypodermoclysis.

Hyperexcitability (neuroexcitablity, 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.

Hypermetropia: Far-sighted.

Hypertension syndrome: Same as hypertension-hydrocephalic syndrome.

Hypertension-hydrocephalic syndrome: Clinical diagnosis based on one or more criteria alone or in combination:

  • Seizures

  • Increased muscle tone

  • Brisk reflexes

  • Firm or tense fontanel (soft spot)

  • Pulsation of the fontanel Tremor

  • Jitteriness

  • Large head circumference

  • Dilated blood vessels over the scalp

  • Prominent or bulging eyes

  • "Sundowning" of the eyes

  • Bluish discoloration over the bridge of the nose.

May be "confirmed" by ultrasound of the brain looking for dilation of the ventricles (fluid-filled spaces in the brain) or changes in the blood flow pattern. 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. It is not equivalent to the Western term "obstructive hydrocephalus".

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.

Hypometropia: Myopia, near-sighted.

Hypostatura: Short stature due to malnutrition, illness or other medical problems. Past the first year of life, it is called alimentary subnanism.

Hypothyrosis: Hypothyroidism, treated with oral thyroid replacement. Screening for hypothyroidism is usually carried out at the first well-child check-up at one month of age.

Hypoplasia: Short stature with no other problems, usually genetic or "constitutional". Also used to refer to under-development of any organ such as a limb, the testis, an eye, etc.

Hypotrophy: Weight lower than expected for age. May be further described as mesosomatic or microsomatic, harmonious or disharmonious, depending on changes from previous growth and the relationship to the height and chest circumference.

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 a lot of resuscitation at birth or if specific abnormalities are noted in the placenta (afterbirth). When severe oxygen deprivation was felt to occur, the word "asphyxia" is used, although this seems to have a loose definition over there. "Prenatal hypoxia"" is a vague term, sometimes used with the wording "non-specific intrauterine infection" to explain away low weight or asymmetric reflexes or tone in a full-term baby.

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 lips and nose), irregular heartbeat, mottled skin, anemia or rickets. This is a transient condition, which resolves when the underlying condition is treated. Term may be also used for more serious conditions such as myocarditis.

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.

Intrauterine pneumonia:  Applied broadly when a newborn has respiratory distress or "rule-out sepsis" (signs of infection).

Ischemia of the newborn: Usually referring to lack of blood flow to the brain, used in the same way or as a synonym to "hypoxia of the newborn."

Lambliosis (lambliasis): Giardia infection.

Lidaza: A very popular enzyme drug, bovine hialuronidase extracted from testicles. Given by injection or electrophoresis to decrease scarring form chronic inflammation, for example, after abdominal surgery.

Limonal: Light magnesium carbonate used to treat constipation.

Little's disease: Cerebral palsy.

Logopedist: Speech therapist.

Lues, Luis: Syphilis.

Luminal (phenobarbital): An anticonvulsant, unfortunately used in many children who do not have epilepsy.

Midronal: Same as cinnarizine.

Minimal brain dysfunction: Used variably to describe transient neurology signs such as hyperactivity or short attention span, or as a followup diagnosis to "perinatal encephalopathy".

Mixed genesis: A health condition with more than one contributing or underlying causes.

Movement (motor) disorder: This is one result of delayed 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 pronounced forms, like spastic tetraparesis. It is sometimes used when a child is not "perfect" but no other diagnosis can be made.

Mucoviscidosis: Cystic fibrosis.

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.)

Myodocalm (tolperisone or mydeton): Centrally acting muscle relaxant.

Myotonic syndrome: Vague terminology used to describe changes in muscle tone, especially low tone (hypotonia).

Narcomania: Drug addiction.

Natal trauma of the spinal cord: Diagnosis made at the time of delivery based on the process of the delivery itself and the state of the newborn. Risk of this condition is considered to be present if the delivery was difficult, i.e. the baby had to be rotated, the head turned, etc. or if the baby has certain signs such as abnormal tone, tremor, irritability, mottled discoloration of the skin, pallor or sweating. This is a functional condition; that is, it will resolve with treatment (massage, application of mild electrical current to the skin over the affected part, etc.) Even when the condition has resolved, the diagnosis is often kept until the age of 1 year. It is frequently used as a contraindication to giving immunizations, with the thought that vaccinations may exhaust the immune system and prevent complete resolution of the spinal trauma. May be accompanied by xray "findings" of "subluxation of C1-C3 vertebrae." Scarier-sounding than it typically turns out.

Nephropathy: Generalized term used to describe any past or present abnormality in kidney function, usually used for conditions thought to be transient.

Neurasthenic syndrome: Condition when a child gets tired very easily or irritated for little or no reason. Manifests in many ways, e.g., irregular or fast heart beat, poor sleeping habits, becoming very red or very pale with vegetative functions (feeding, burping, passing stool) in infants.

Nicospan (nicotinic acid): B-complex vitamin.

Nootropyl (nootrops, piracetam): Drugs used to treat strokes, vertigo, learning disability and other brain disorders. Occasionally used in Down's Syndrome and sometimes in difficult births.

Obstructive bronchitis: A viral respiratory infection with wheezing. This can be wheezing from the inflammation and airway mucous of viral bronchiolitis, or a wheezing tendency that may evolve into asthma. Roughly speakly, 1/3 of infants and toddlers who wheeze for the 1st time won't wheeze again, 1/3 will have wheezing with colds and such but outgrow it by school-age, and 1/3 will continue to have asthma symptoms into later childhood and beyond.

Oligophrenia: Functional mental impairment, meaning the person is not operating at the expected level, usually not diagnosed until older than 4 years. Vague and frustrating "diagnosis" for us, that may be caused by any number of inheritable or environmental influences such as genetic syndromes, learning disabilities or mental retardation of unknown cause, fetal alcohol spectrum issues, head trauma, infection, orphanage care, social chaos, poor schooling, and other adverse experiences, etc ...

Could refer to an adult that would be cognitively "normal" if tested but has had a hard-knock life and is seeking disability pension, or an orphan unfairly labeled as "debil" by a cursory examination at 3-4yo, or a person with mild mental delay, or severe mental retardation. Not unusual to hear that a birth parent has this label, very hard to know whether this is an inheritable condition in any given case. It does not refer to schizophrenia, although it is useful to ask about mental health concerns. Nor does it refer to a rock opera by the Who.

Onanism: Masturbation.

Open oval window: Patent foramen ovale, the normal embryological connection between the two upper chambers (atria) of the heart, typically detected on routine newborn heart ultrasound. Is not considered a heart defect, and usually closes on its own. Not the same as an atrial septal defect (ASD).

Panagin (aspartic acid): A dietary supplement.

Panangin: Hungarian-made equivalent of Asparkam.

Pancreatin: Pancreatic enzymes with protease, amylase and lipase activity used to treat pancreatic insufficiency associated with CF and pancreatitis.

Pantogen (calcium pantothenate): A component of coenzyme A which is essential for the metabolism of carbohydrate, fat and protein; B complex vitamin.

Pantogar (calcium pantothenate; thiamin nitrate; medicinal yeast; cystine; keratin; aminobenzoic acid): Used to treat disorders of the hair and nails.

Pantotene: Vitamin B5.

Papaverine: Synthetic analog of an antispasmodic substance found in the opium poppy. Used to relax involuntary muscles (blood vessels, intestine, etc.)

Pentagin: Pentazocine, narcotic analgesic.

Perinatal (prenatal) encephalopathy : Variably translated as "perinatal lesion or affectation of the central nervous system," "encephalopathia," and many others. One or more risk factors present in the history of the mother or the baby, which may allow, or not, for a poor neurological outcome (see table that follows). Some variation of this on >90% of Russian referrals, thus has very little, if any, predictive value for any particular child. Best to look for more concrete information in the referral.

Maternal Factors
Lack of known medical history
Drug, alcohol or cigarette use
No prenatal care
Anemia
Past miscarriages, abortions or premature deliveries
Young or old maternal age
High number pregnancy
Chronic health problems
Infections
Poor social situation
Difficult or complicated delivery
Abnormal placenta
And many others

Infant Factors
Low Apgar scores
Abnormal muscle tone or reflexes
Jaundice
Seizures
Irritability or depression
Tremor
Poor suck, feeding problems
Abnormal ultrasound of brain or other parts of body
Intrauterine or perinatal infections
Prematurity
Abnormal prenatal growth
Abnormal laboratory tests
And many others

Perinatal trauma (affectation) of the CNS (central nervous system): Synonym for perinatal encephalopathy. Also called perinatal lesion, cranio-cerebral trauma of the newborn and other variations.

Phthisiologist: Specialist in the management of tuberculosis.

Piloecstacy of the kidneys: Dilatation of the collecting system just next to the kidneys, considered to be "pre-hydronephrosis."

Piracetam: see Nootropyl

Positive dynamics: Continuous improvement or in the recovery phase in any condition, but especially in growth and development. A child with positive dynamics is expected to be normal.

Prematurity: Determined by maternal history, birth weight, and/or a scoring system such as the Dubowitz (same as used in North America). Described as stage or degree (terms not used in US), see table below.

Stage or Degree

Gestational Age

Weight

1

36-37 weeks

2001-2500 grams

2

32-35 weeks

1501-2000 grams

3

28-31 weeks

1000-1500 grams

4

<28 weeks

<1000 grams

Psycho-affective respiratory attack: Breath-holding spells.

Pyramidal insufficiency: Infant considered to be at risk of cerebral palsy because of adverse perinatal history (e.g., extreme prematurity or low birth weight) and/or because of abnormal physical examination (e.g., increased tone or reflexes, asymmetry of reflexes, delayed development). Usually cannot be confirmed as cerebral palsy until after 12 months of age as most children will improve before then. Usually is apparent by 6 months of age and, if it is going to resolve, disappears by 1 year. This is a commonly encountered diagnosis.

Pyridoxine (pyridoxal phosphate): Vitamin B6, often used with other B vitamins to treat brain disorders.

Rachitis: Rickets, bone disease due to lack of vitamin D (see table below).

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 (bowed legs), abnormal skull shape or size (boxy forehead), poor muscle tone and strength.

Relanium (diazepam): Long-acting benzodiazepine used as a sedative, anxiolytic and anticonvulsant.

Retrobolin (nandrolone): Anabolic agent.

RIF: "Immuno-fermentation reaction" - a test for syphilis.

RIT (or RIBT): "Immobilization Treponema Pallidum Reaction" - another syphilis test.

Rudotel (medazepam): Long-acting benzodiazepine with uses similar to diazepam, such as anxiolytic, sedative, anticonvulsant, etc.

Sana-Sol: Multivitamin and mineral supplement.

Seduxen (diazepam): Long-acting benzodiazepine used as a sedative, anxiolytic and anticonvulsant.

Sexual crisis: Bloody discharge from the vagina of the newborn or breast swelling, with or without milk discharge. Normal finding, noted in the first two weeks of life, due to withdrawal of maternal hormones.

Sonne Dysentery: Lower intestinal infection with Shigella bacteria, causing loose/watery to bloody/mucoid stools, occasional neurologic symptoms like seizures and lethargy, treated with antibiotics and fluids.

Spastic tetraparesis: This is a potentially more serious form of movement disorder in children less than 12 months of age, graded from mild to severe, involving all 4 limbs. In the worst case, the child barely moves at all. If treatment (massage and physical therapy) is started early, this is usually easily correctable but some children have persistent neurological findings. When we see this diagnosis, we make sure to ask about trends of muscle tone and development over time, and if the child is felt to be showing signs of cerebral palsy.

Specialized Schools: Courtesy of Dr Gordina, here's a list of Russian specialized ("correctional") schools:

  • Type 2 - For children with hearing problems

  • Type 3 - For children with significant vision problems (legally blind)

  • Type 4 - For children with poor vision

  • Type 5 - For children with significant speech/language delays

  • Type 6 - For children with motor and orthopedic problems (mostly CP)

  • Type 7 - For developmentally delayed children

  • Type 8 - For children with intellectual disabilities (mental retardation)

Squint: Crossed eye.

Stage of condition: The progression of a disease:

Recuperation or rehabilitation - Improving but still requiring treatment.
Subcompensated - Abnormal, clinically unstable may deteriorate.
Compensated - Abnormal but stable.
Recovery - Condition or illness completely resolved.

Stigma: Any one or more minor congenital abnormalities such as low set or posteriorly rotated ears, high arched palate, epicanthal folds, broad thumb, etc... When no particular syndrome is identified, North American physicians sometimes refer to such as child as a "funny looking kid," or to use a more technical term, "mildly dysmorphic". A child with 3 or more minor congenital anomalies is at increased risk for a broader syndrome.

Stomatologist: Dentist.

Sugeron: Same as cinnarizine.

Sumamed: Azthromycin (Zithromax), a macrolide antibiotic.

Thymomegaly: Enlarged thymus, "diagnosed" from the normal thymic shabow on infant xrays, and of no clinical significance.

Toxicosis: The same as gestosis when used for pregnant woman. Also used in any severe acute disease, usually an infection, to describe a very ill looking patient (same as North American description "toxic-appearing.")

Trental (pentoxifylline): Used in the treatment of intermittent claudication associated with peripheral vascular disease.

Triampur: Combination diuretic containing triamterene and hydrochlorthiazide.

Umbilical hernia: We use the same term ... for some reason seems more common over there. Benign protrusion of the bellybutton caused by lax umbilical fibrous ring. Can look impressive, but is common, painless, easily reducible, and the majority resolve without intervention in a few years. Large, "elephant trunk" hernias are less likely to close on their own, but it's an easy day-surgery to fix. Does not need taping or any other "treatments".

Valerian: Dried rhizome and roots of valeriana officinalis, which is used as a sedative.

Vegeto-vascular syndrome: Symptoms thought to be associated with blood flow to internal organs, for example, frequent headaches or migraines in an older child or mottled skin in the infant.

Verospiron (spironolactone): Diuretic, aldosterone antagonist.

Vertizine (meclozine): Used in the prevention and treatment of nausea, vomiting and vertigo associated with motion sickness.

Vicasol: Synthetic vitamin K.

Viferon: Anti-viral, immunomodulating medication containing interferon and vitamins.

Wassermann test: Also written as RW. Screening test for syphilis.

Wydase: see Hyalase

Newborn Screening Tests

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In the US, newborns are tested for congenital disorders of metabolism and a growing list of other conditions by heelstick screening tests. What gets tested by these newborn screening panels is decided by individual states. As a result, there is a substantial variability among state panels. As of April, every state screens for PKU (phenylketonuria), galactosemia and congenital hypothyroidism. Twelve states currently mandate screening for over 40 disorders. These states are able to screen for this high number of disorders with the use of tandem mass spectrometry, which is a technology that analyzes the metabolite composition of the blood spots.

These are all rare disorders: the most common is congenital hypothyroidism (prevalence is about 1 in 3,500), with the rarest being homocystinuria and MSUD (prevalence for is about 1 in 200,000 for each). But intervening early can improve outcomes in many cases, so there is an push to test for more and more conditions.

In terms of drawbacks, the test itself is a simple heelstick. There is additional cost involved in expanded screening, however. Most importantly, as with any screening test, these screens are designed to err on the side of overdiagnosis, so confirmatory tests may be necessary, and "false positives" can certainly cause a lot of stress.

If interested, you can obtain kits for expanded newborn screening for rare inherited disorders through one of these companies:

These services screen for anywhere from 20-50 disorders and the cost ranges from $35 – $89 (plus shipping and handling). Many require the involvement of a physician in the ordering and interpretation. Not all are set up for older/international screening situations. Pediatrix seems to be the only one of these to offer a comprehensive panel that also includes the standard state screens. Unfortunately, since these are newborn screening kits, they are not designed for older infants and toddlers. You'll want to check with the company to see what their age limits are for various tests ...

In the international adoption scenario, provided the child's current legal guardian is OK with testing (a big and usually insurmountable if in most instances, but preadoptive parents in Guatemala have been successful with this), you'll need to be sure that the kit you use also covers the basic newborn screen, and not just tests that are designed to supplement the common state screens. In Korea, they do routinely test for PKU and hypothyroidism. Russia also reportedly tests for these in many regions, but the results are not typically available.

In our clinic we do not routinely send newborn screening tests on international adoptees. The Washington State lab is not set up to run the most important screens on older infants and toddlers. With our initial bloodwork, we do screen for various types of anemia, which should uncover clinically significant hemoglobin disorders, and we also screen for hypothyroidism. If children have symptoms of metabolic illnesses, there are blood and urine tests that we can perform as well.

Other Newborn Screening Resources:

Thanks to Beth Tarini, MD for background material

Giardia and Other Stool Parasites

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Giardia is the most common parasitic infection in international adoptees, and is also frequently implicated in day-care center diarrhea outbreaks. Studies have shown that it is found in up to 20% of international adoptees, particularly older adoptees from Eastern Europe; in our experience it seems to come in clusters, averaging around 10-20% of our adoptees, and we do see it from China as well.

It's a microscopic flagellated protozoan parasite that is quite infectious (it can take as few as 10 cysts to cause infection), and it is typically spread by drinking contaminated water or fecal-oral transmission. So ... wash hands scrupulously after diaper changes, toilette, and before meals/food prep until giardia is ruled out, and don't have new arrivals share baths with other children at first.

Giardia can be asymptomatic, but symptoms often include loose, watery stools, with a certain foul-smelling greasy, floaty, frothy je ne sais quoi. Flatulence, cramps, bloating, and malaise can also be present. Chronic giardia may be associated with significant weight loss and failure-to-thrive. It also can cause secondary lactase deficiency - interfering with the intestine's ability to digest lactose. Even after successful treatment, loose stools can persist for a month or two. Cutting back on lactose, and supplementation with probiotics (unproven but likely to be safe) may help during this time period.

To diagnose giardia and other intestinal parasites, we recommend submitting 3 stool samples collected 2-3 days apart (preserved promptly after passage in a polyvinyl alcohol kit) for ova and parasite (O&P) examination, and one fresh (<1hr old) sample for Giardia antigen. Some refugee centers treat empirically with albendazole on arrival; we don't, because we prefer to know what we're treating, and because albendazole is ineffective against some of the common parasitic infections in adoptees. If the initial stool tests (remember, collect them 2-3 days apart to increase the chances of finding something) are negative but symptoms consistent with intestinal parasites persist, consider rescreening the stool; initial stool examinations miss infections in some children.

It's also important to do a "test-of-cure" giardia antigen test 1-2 months after treatment to confirm treatment success. If an adoptee tests positive for giardia, we treat, regardless of symptoms. You may not realize until later that the giardia was in fact causing symptoms, including malaise and poor growth; we also do this for the "public health" of the adoptive family.

Folks who don't see a lot of giardia often prescribe flagyl (metronidazole); in our experience this has an unacceptable failure rate. A better choice is Tinidazole, which was recently FDA approved for this indication, but has been in off-label use for some time, even in children <3yo. A convenient one-time 50mg/kg dose (max 2g) is what we use. It's mighty bitter, so mix with espresso syrup or other intensely sweet/flavorful option. See our medication tricks and tips for other ideas. Clark's Pharmacy in Bellevue, WA (425-881-0222) has it available in convenient dosing, is giardia savvy, and does mail order. Alinia is another recently approved medication for giardia that seems to be a reasonable alternative.

We don't automatically test or treat family members if giardia is promptly diagnosed in a new arrival, but if the child has been home awhile, if there are other young children around, or if anyone else is symptomatic then they should get checked as well.

Other stool parasites like Ascaris lumbricoides, Blastocystis hominis, Dientamoeba fragilis, Entamoeba histolytica, Trichuris trichiura, hookworms, and pinworms are also commonly identified in international adoptees. O&P results will often include non-pathogens, or commensals, which are not felt to cause illness and do not require treatment. However, they can be a sign that other parasites are present, and you should make sure that all 3 stool samples are evaluated. Links with good information about these and other, less familiar parasites are listed below.

Other Stool Parasite Resources:

Sensory Integration and Sensory Processing Disorder

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Sensory integration dysfunction (DSI), or as it is currently known, sensory processing disorder (SPD) is a complicated, somewhat controversial disorder of "sensory processing" - the ability to take in, filter, and respond appropriately to sensory input (touch, movement, vision, hearing, taste, and smell). Some children are felt to be "sensory-avoiding", or "sensory-defensive" - feeling bombarded by overly intense experiences of touch, lights, sound, and so on. Some children are "sensory-seeking", or "sensory under-responsive" - seeking intense stimulation, bashing and crashing around, and seeming less aware of pain and touch. Some children have trouble using sensory inputs to plan and perform gross and fine motor tasks ("dyspraxia", or motor planning disorder).

SPD is one of those diagnoses where definitive research on prevalence, validation of diagnostic tools, and effective therapy is lacking. It's especially hard to know when normal developmental, temperamental, and other individual differences in sensory responsiveness becomes a "disorder". It's underdiagnosed in many arenas, and overdiagnosed in others, just like any disorder where convenient but unvalidated checklists proliferate on the web, and where "cottage industries" marketing products and treatments are competing for your parental attention and money.

Having worked with a lot of post-institutionalized and alcohol-exposed children (two populations that are at higher risk for SPD), I am convinced that there are many such children for whom SPD is a real disorder - one that significantly impairs their function in home, social, and school environments. And I've seen children respond well to occupational therapy (OT) sensory interventions, especially functional approaches that integrate sensory work with the child's needs in motor skills and social interactions.

Even if your child's issues are more reflective of developmental immaturity or individual temperament than a definitive disorder, the sensory approaches can be fun, stimulating, and helpful with self-regulation and self-soothing. It's still hard to convince insurers and schools to fund such interventions, and depending on your situation, sensory-based therapy may not be the most pressing use of your time and money ... but here are some good resources on the topic. A lot of interventions are ones that you can do at home, and while there are scads of nifty products marketed for SPD, you can get a lot done with simple, cheap, or home-made tools and toys.

Sensory Processing Disorder Resources:

Café-au-lait Spots and Neurofibromatosis

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There is a group of genetic neurologic conditions called neurocutaneous syndromes where skin findings can be the first clue to a broader syndrome. One of the most common is neurofibromatosis type 1 (NF1), which occurs in up to 1 in 3000 individuals. This is a condition where benign tumors grow on nerve tissue, causing skin, bone, and sometimes brain issues.

One of the first signs of NF1 can be "café-au-lait spots", which are typically light to dark-brown flat, discrete, round or oval skin patches. These spots become more common with age, and can be more common in African-Americans, but most of us have 3 or less. If more than 5 café-au-lait spots (>5mm each) are seen, this should be considered NF1 until proven otherwise. Other findings like freckling in the armpits or groin, or firm, rubbery neurofibromas typically show up later, in preadolescence. Many with NF1 only develop a few fibromas, but they can be quite cosmetically significant for some.

Mental retardation is rare with NF1, but attentional and specific learning issues are common in this disorder. While fibromas are benign, there is a somewhat increased risk of malignancy (3-5%), and brain fibromas can be associated with epilepsy. Short stature and large head are common in NF1.

The majority of folks with NF1 have mild disease, and complications are often correctable to some degree. Treatment focusses on surgery for painful or cosmetically significant fibromas, and addressing learning issues through early intervention and school supports.

Here are the diagnostic criteria for NF1 (2 or more are required for the diagnosis), from GeneReviews:

  • Six or more café au lait macules over 5 mm in greatest diameter in prepubertal individuals and over 15 mm in greatest diameter in postpubertal individuals
  • Two or more neurofibromas of any type or one plexiform neurofibroma
  • Freckling in the axillary or inguinal regions
  • Optic glioma (tumor of the optic pathway)
  • Two or more Lisch nodules (iris hamartomas)
  • A distinctive osseous lesion such as sphenoid dysplasia or thinning of long bone cortex with or without pseudarthrosis (related orthopedic issues)
  • A first-degree relative (parent, sib, or offspring) with NF1 as defined by the above criteria

Additional Resources:

Coughs, Congestion, and Colds

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"There's only one way to treat the common cold - with contempt"

    - the esteemed Sir William Osler, MD

Ah, the common cold. Common, indeed - the average preschooler has six to 10 colds per year, with each illness lasting 10 to 14 days. And the sad truth is, Dr. Osler's 1890s-era wisdom is still largely correct. He went on to say, "... toss the pills into the ocean. So much the better for mankind, so much the worse for the fish"!

For children less than 5, there just isn't any safe, effective treatment available to treat the common cold. None of the common cold medicines can convincingly outperform sugar water, and the FDA has warned of a number of serious adverse reactions when used in children under 2 (our advice: don't risk it). But that doesn't seem to keep cold remedies from being a billion-dollar-a-year industry.

We all know what a cold looks and feels like, although we sometimes seem to forget when it comes to our own kids. Signs of something more serious like pneumonia, bronchiolitis, or asthma could be:

  • Prolonged or high fever (more than 2-3 days, or >102 degrees)
  • Breathing fast (count breaths over one full minute while quiet or asleep; infants should breathe <50-60 times per minute, toddlers <40x/min, older children <30x/min)
  • Working hard to breathe (heaving chest, visible rib movement, nasal flaring, grunting)
  • Getting dehydrated (not drinking enough, no tears/drool, less than 3 urinations/day)
  • Acting really ill or lethargic

If those are happening, please let us know - if you're travelling, we may want to start the zithromax, and possibly find someone to evaluate in person. We do have a lower threshold to start antibiotics when we can't see kids ourselves.
 

Other Complications:

If nasal congestion and wet cough last more than 2-3 weeks then it may be bacterial sinusitis, which can be helped by antibiotics as well; the color/consistency of the snot doesn't tell us if this is viral or bacterial, unfortunately. Ear infections can be a complication of colds, often marked by new fever and irritability when a cold seems to be running its course. Ear tugging and fiddling is not a reliable sign of ear infection in preverbal children, unfortunately.
 

Let's review the common medications and treatments for the common cold:

  • Decongestants (pseudephedrine, etc) - Somewhat effective for daytime relief in adults and school-age kids, but they just don't work in young kids. Besides, does putting your ill, sleepless child on over-the-counter speed seem like a good idea?
  • Decongestant Nasal Sprays (Afrin, Dristan, etc) - These work for short-term congestion emergencies (less than 2 days at a time) but can be nasally addictive, causing "rebound congestion" when you stop using them. Not routinely recommended, and not for infants/toddlers.
  • Antihistamines (Benadryl, etc) - A good treatment for allergies, but colds are caused by a viruses; useful only for their sedative effect in desperate sleepless situations. Beware - 1 in 5 kids gets LOOPY on benadryl.
  • Cough Suppressants (dextromethorphan, codeine, etc) - It sure is tricky suppressing that cough reflex without putting your child in a coma. Safe doses of codeine and it's synthetic cousin, dextromethorphan, don't seem to be that effective at suppressing this vital reflex. Codeine is also just not safe enough to use in kids anymore, especially in Ethiopian adoptees. That said, in older children with a lingering, nagging, non-productive cough, you might try some Delsym (long-acting dextromethorphan).
  • Expectorants (guaifenesin) - These don't work in young children, who don't need any help making copious secretions. In older kids and adults, they may make phlegm thinner, but so does drinking lots of fluids. Mucinex is a single-ingredient, extended release form of this for older kids and adults.
  • Tylenol or Ibuprofen - IF your child is uncomfortable from fever, or in pain, these can help. Otherwise you may be suppressing the body's immune response.
  • Antibiotics - No. Nyet. Bu.
  • Zinc - Yuck. Zinc lozenges and zinc up the nose have not shown to be effective in kids. But zinc deficiency is associated with poor immune function (and many adoptees are zinc deficient). There's lots of zinc in high-protein foods like meats, seafood, milk, and fortified breakfast cereals. A "complete" multivitamin with minerals can also help.
  • Vitamin C - Controversial. Large doses may shorten symptoms in adults, but megadoses are not clearly safe in kids, and can cause diarrhea. Like zinc, let's just make sure you're getting enough, and some extra at the first signs of a cold may help.
  • Echinacea - Recent study done here found no clear benefit at reducing symptoms in kids. Bummer.
  • Probiotics - Lactobacillus milks, active culture yogurts, and probiotic supplements are emerging as a good thing, although definitive studies are still pending, and it's not at all clear that they treat colds. They may be effective at preventing colds, allergies, and diarrhea, with a host of other potential benefits.
  • Andrographis (Kan Jang) - Herbal remedy that's all the rage in Scandinavia. Some smaller studies showing benefit in colds and flu. Promising, but larger studies may sink this ship as well.
  • Umcka drops - Ancient Zulu Homeopathic Geranium-ness. Germans love this stuff, available here through Nature's Way. Some promise for sinus, throat, and bronchial infections, large high-quality studies are lacking, so who knows, really? If you enjoy taking the latest natural sounding probable placebos, give it a try.
  • The Stuff That Teacher Invented Who Never Ever Got Another Cold (Airborne) - It was on Oprah, so it must work. This contains Lonicera, Forsythia, Schizonepeta, Ginger, Chinese Vitex, Isatis Root, Echinacea, along with vitamins, zinc and magnesium. Phew. Feels a bit faddish to me, with a few too many ingredients.
  • Whiskey - Dr. Osler's preferred cold remedy: "hang your hat on the bedpost, get into bed, start drinking whisky. When you see two hats stop!" Not an option for the kids, but what you do with the colds they give us is entirely up to you.
  • Humidification - Unclear benefit from humidifiers and vaporizers, but they feel good for many, and may keep nasal secretions easier to clear. If you use these, clean them obsessively, as they are effective at aerosolizing molds and bacteria.
  • Menthol, Eucalyptus, VapoRub - Studies show that people think these are working even if they aren't. You can put them in the vaporizer, plug a gizmo into a wall outlet, or rub them onto your child. That may be the key ... with the massage, you get the healing power of relaxation and parental tender loving care.
  • Chicken Soup - Yup, small studies and grandmothers actually agree on this one.
  • Nasal Saline Drops/Sprays and Bulb Suction - This really can help infants and toddlers, who can't effectively blow their nose. Infants, in particular, have tiny nasal passages that they depend on for sleeping and eating. You can buy nasal saline or make it with 1/2 tsp salt in 1 cup warm water. Put 1-2 drops in each nostril before suctioning to help clear dry nasal secretions. A bulb syringe is most effective if you squeeze it, put the tip in one nostril, and pinch the nose to get a good seal on the side you're suctioning and close off the side you're not, and SLUUURP. Don't go too crazy with this, as you don't want to overly irritate the nasal mucous membranes.
  • Plenty of Rest and Plenty of Fluids - Yes. Da. Shi.
  • and finally ... Tincture of Time - The ONLY cure for the common cold. Support the immune system in its good work with rest, fluids, love, and attention, and otherwise stay out of the way.

Updated 8/07

Craniofacial Resources, including Cleft Lip and Palate

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The Craniofacial Clinic at Children's Hospital in Seattle just went online with a great resource for craniofacial conditions like ... (following links and text from their site)

The Craniofacial Clinic site also offers a glossary of craniofacial terms.

Children's has another nice resource dedicated to cleft lip and palate:
One especially detailed document is their "Critical Elements of Care", which goes into a lot of detail about what to expect over the years in terms of clinic visits, surgeries, and other interventions:

Constipation

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It's a sad day when poop just isn't funny anymore ... at least for someone like me who does enjoy poop humor and things scatological (it's an occupational hazard). That sad day is a lot more likely to happen when travelling to adopt a child. In fact, constipation is so common a concern for travelling adoptive parents that I've taken to inventing medical terminology with a reassuring cachet such as "transitional slowed bowels", just to take the edge off of the hour-and-minute countdown since last passed stool. It's also a problem for many other children in my practice ... our modern processed diet may be to blame, as a diet low in fiber, low in fluids, and high in sugars predisposes kids to constipation.

In general, constipation is defined more by what your child is passing rather than how often. Normal stool frequency in infants varies from several times a day to 1-2 times per week. But if your child is passing painful, hard "rocks", "golf balls", or "boulders" (egad), especially if there is intermittent leakage of more liquid stool (encopresis), then indeed we've got a problem. If your child is vomiting, or has a full, tight, and tender belly, then we've really got a problem needing urgent medical attention.

In the recently adopted child, constipation is often blamed on iron, when in fact it's more likely to be from the stress of travel and transition, dietary changes, and perhaps dehydration. The association between iron and constipation is overrated, and since most adoptees are iron-deficient, it's not wise to try and limit their iron intake.

Soy formula can cause harder stools, so you may not want to switch your child to this if constipation is an issue. Luckily, cow milk intolerance is another overrated issue - most infants and young toddlers tolerate cow milk products just fine (rarely, cow milk protein allergy can be associated with intractable constipation).

To assist you in your quest for smooth bowel movements, or SmoovementsTM, if you will ... I will now share with you ancient secrets of "FPBM - For Proper Bowel Movements". Let's start with F - FLUIDS, FRUITS, and FIBER are your Friends when it comes to constipation.

Infants:

  • several ounces of 100% fruit juice 1-2x/day, especially prune, pear, or apple juice
  • fewer white foods like bananas, rice, soy, cheese, white flour products, and ...
  • more "P" fruits and veggies like pears, peaches, prunes, plums and peas
  • substitute barley cereal for rice cereal
  • in hot climates where dehydration is a concern, a few extra ounces of water can help, but since our kids usually need the calories, I'd stick with juice or watered-down juice
  • if you've gone more than 3-4 days with no stool, and your child seems to be in pain or straining a lot, try a glycerin suppository and a warm bath; you can also gently lubricate around the anus with vaseline or diaper cream
  • if your child is straining, you might try bicycling their legs or holding them upright in squatting position (their back against your chest, holding their knees up towards their chest)

Toddlers and Older Children:

  • fruit juice, and fewer white foods/more "P" fruits and veggies as above can help ...
  • ... but in this age group, we should focus more on fiber and fluids: goal is at least their age in years plus 5-10 grams of dietary fiber per day, with lots of fluids
  • whole grain cereals (read the label - lots of fake "whole grain" stuff out there) - remember "Colon Blow Cereal" from Saturday Night Live? That's the ticket - bran cereals, whole grain cereals, muesli, mini-wheats, etc ...
  • bran muffins, cookies, crackers, and pancakes with whole grains. Metamucil makes some psyllium fiber cookie-type wafers as well ...
  • Benefiber is a nongritty, flavorless fiber supplement that dissolves more completely than Metamucil, for when you can't meet the fiber goal through diet alone
  • You can also get your 100% juice plus 10g fiber premixed in one convenient but pricey juice box (they also carry fiber cookies)
  • dried fruits (prunes, apricots, figs, raisins, etc)
  • beans, peas, and lentils
  • fresh fruits and veggies with fiber - carrots, cabbage, celery, rhubarb, prunes, pears, peaches, plums, apricots
  • the constipation chapter below has nice recipes for "Right and Regular" jam and fruit/fiber smoothies
  • you can try 1/2 tsp unprocessed bran or flax seed mixed with food 1-2x/day but only if your child is drinking adequate fluids
  • for kids 4yo and up, popcorn is a great, tasty source of fiber, as are seeds and nuts

"B"-havior: 

  • in older children with constipation, suggesting regular sitting sessions 2x/day can help - after meals is the best time
  • reward successes, lay off the failures (it's bad enough as it is)
  • regular exercise keeps you regular
  • for kids who are fearful of pooping from passing painful large-caliber stools, sitting backwards on the toilet leaning onto the tank can help
  • 3-5yo "magical thinkers" often feel that if they withhold stools after they've had a painful experience the poop will disappear. It won't. It'll just add to their "boulder collection". Reinforce that the poop needs to come out every day, and help it do so with diet, regular sitting, and Miralax.
  • counseling may be necessary (and very helpful) for older children with encopresis

Medications that start with M:

  • if diet isn't working, if symptoms are severe, if your child is withholding stool, or if there's leakage (encopresis) you need to talk to your doc
  • my hands-down favorite laxative is Miralax, a tasteless powder mixed into your choice of fluids that is very safe, well-tolerated, and effective ... and now available over-the-counter
  • if you've been dealing with long-standing constipation or encopresis, you need to continue interventions like Miralax for 2-3 months at least, to help the rectum and colon recover to a normal caliber
  • Maltsupex or Milk of Magnesia are also frequently used
  • Mineral oil is another old favorite but it's yucky (try it in ice cream) and can pose an aspiration risk in younger children
  • bowel stimulant products like senna can be used occasionally but are not for chronic use
  • DON'T enemize your child without consulting a physician, and avoid frequent rectal interventions in general (unnecessary and traumatizing)
  • DON'T give honey or karo syrup to infants - there have been cases of botulism from this. UPDATE: Karo syrup manufacturing processes are now considered safer, but karo syrup no lomnger contains some of the helpful glycoproteins, so it may be less effective.

Remember, it's all about FPBM - "For Proper, Pleasing, Painless, and Punctual Bowel Movements"

  • Fluids, Fruits, Fiber are your Friends
  • Prunes, Pears, Peaches, Plums, Peas, Psyllium, Peanuts and Popcorn
  • Bran, Beans, Benefiber, and Behavioral interventions
  • Miralax (and/or Maltsupex, Milk of Magnesia, Mineral Oil)

Other Resources:

Diaper Rashes

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Want an advanced degree in diaper rash management? This excellent article from Pediatric Nursing takes you deep into the world of diaper pastes, for when Desitin just isn't cutting it anymore:

Me, I'm a big fan of the descriptively named Boudreaux's Butt Paste for your basic diaper rashes and irritations. It works well, smells good, and, well, it's called Boudreaux's Butt Paste.

Another good option is Triple Paste. I use this on raw diaper rashes that need a really tenacious barrier paste.