Fetal Alcohol Spectrum Issues

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.

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.

• An FASD Parenting Toolkit is also available from UW

• The CDC has a number of FASD resources

• Making Sense of Fetal Alcohol Spectrum Disorder (FASD) is excellent

• Proof Alliance has a nice 3-page handout on Parenting Children with FASD

• FASD United has many tools and resources for parents

• We also like Parenting Children with Affected by FAS - A Guide for Daily Living

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):

• Alberta Schools guide for teachers and caregivers of child with FASD

• University of South Dakota FASD Education Strategies Handbook

• SAMHSA Reach To Teach - Educating Elementary and Middle School Children with FASDs

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

Tuberculosis in International Adoptees

Our international adoption practice includes children from parts of the world where tuberculosis is much more prevalent than in the US, and kids from especially high-risk backgrounds for TB, like institutional care. Research on international adoptees reveals that about 1 in 5 children from these backgrounds will have positive skin tests for tuberculosis (called PPDs) on arrival, or at the retest 6 months later. This brief article gives some background on TB, and rationale for testing and treatment.

Tuberculosis is an infection with Mycobacterium Tuberculosis (TB). While the most common site of infection is the lungs, it can affect many parts of the body. It is an atypical infection and most of the time, infection does not cause any symptoms initially. When an individual is infected by TB but has no symptoms, physical findings, or chest x-ray abnormalities, then they have Latent Tuberculosis Infection (LTBI, or "inactive TB"). Patients with LTBI are not ill appearing, have no symptoms, and are not contagious (i.e. they cannot spread the infection to others).

The reason it is very important to treat LTBI is that if not treated, there is a 5-10% lifetime risk of developing Active Tuberculosis, which is a life threatening illness. Some people have an even higher risk of progression to active disease and these include: infants, adolescents, patients who were infected within the previous two years, patients with compromised immune systems (like HIV), patients with chronic illnesses such as diabetes or kidney disease. LTBI is treated with a medication called isoniazid (INH). It is given once daily for nine months. The liquid preparation is hard to tolerate and often causes bad diarrhea so we generally prescribe a tablet that can be crushed.

Tuberculosis is typically diagnosed using a skin test or a PPD. This should be tested at arrival and again 6 months later, regardless of whether they had BCG (TB immunization) previously or not. A positive PPD reading depends on the risk factors for a particular patient and is sometimes a bit difficult to read, so it is important to have it read by someone who does this often. There are some newer blood tests for diagnosing Tuberculosis that can be used in children over 5 years of age, with some providers using them as young as age 2. .

Frequently Asked Questions:

My child had a negative PPD previously, why is it positive now?

This can be for a number of reasons. Your child may have been newly exposed to TB since the previous test. Also the time from infection until the development of a positive PPD can be between 2 and 12 weeks. There are 10-15% of children with normal immune systems who have had culture proven disease with negative PPDs. Reasons for this include young age, poor nutrition, other viral infections, recent TB infection, and disseminated TB (an overwhelming full body form of the illness). Also kids with abnormal immune systems can have a falsely negative PPD. This is why we repeat a PPD on international adoptees and other children at high risk for TB six months later.

My child was given BCG (an immunization against TB), does this always cause a  positive PPD?

No. BCG is given in many parts of the world to prevent TB and studies find it about 50% effective on average.  It is more effective for preventing some more serious forms of TB in young children and that is why it is given.  Typically it is given soon after birth. While it can cause a positive PPD, for those given BCG at less than 2 months of age, 40% have negative PPD by 1 yr of age and more than 95% have a negative PPD by 5 years of age. It is the young kids with the recent exposures that are at increased risk for developing active disease where it is the most unclear and those are the ones it is most important to treat. There are newer blood tests that may help us with this but not in kids under 5 years of age. Both the Centers for Disease Control and The American Academy of Pediatrics recommend ignoring the history of BCG injection when evaluating a PPD. However, a very recent, actively oozing BCG site is one situation where we may defer the PPD until the BCG site is more healed.

Are there any precautions I should take while my child is taking isoniazid?

Yes, there are, but isoniazid is actually very well tolerated in children.  Adults over 35 years of age are more likely to have some liver inflammation, and are screened with blood tests, but this is not typically needed in children unless they have known liver issues. If your child develops unexplained abdominal pain, vomiting, or jaundice (a yellowing of the skin and eyes) then you should contact your doctor.

Your child may also experience an unpleasant reaction (headache, large pupils, neck stiffness, nausea, vomiting, diarrhea, sweating, itching, and chest pain) if they eat too much tyramine containing food, so those should be avoided or eaten in moderation. These foods include: aged cheeses, avocados, bananas, figs, raisins, beer, ale, caffeine (coffee, tea, colas), chocolate, meats prepared with tenderizer, liver, bologna, pepperoni, salami, sausage, meat extracts, caviar, dried or pickled fish, and tuna, red wine, sour cream and yogurt, soy products, and yeast. Some of those are childhood standbys (bananas & yogurt), some are not (beer). We've not heard many reports of this reaction, so mild-moderate consumption may be OK.

What is the best way to get my child to take the tablet?

A pill crusher will make the medicine into a powder for kids unable to swallow a pill. It is best to mix it in a small amount of something with a very strong flavor such as chocolate syrup or one of the syrups used for Italian sodas. We have a helpful article on "Taking Your Medicine". One clever family opened an Oreo cookie and mixed the powder with the icing in the middle of it, then replaced the top cookie. Their child really enjoyed the daily cookie for nine months!

Is it important to take this medicine every day?

Yes! In fact, some public health departments use "directly observed therapy" (having a nurse watch the patient take the meds) for TB. If a dose is missed, give the missed dose as soon as you remember it. However, if it is  almost time for the next dose, skip the missed dose and continue your  regular dosing schedule. Do not take a double dose to make up for a  missed one.

Isoniazid usually is taken once a day, on an empty stomach, 1 hour before or 2  hours after meals. However, if isoniazid causes an upset stomach, it may  be taken with food. Find a time that works for your family, and set a recurring alarm/reminder.

Will my child need more testing after the isoniazid, or further PPDs?

Not unless they develop symptoms of tuberculosis. Their PPD will likely remain positive, but we will document that they had a clear chest x-ray and completed INH therapy. If TB is suspected later, or needs to be ruled out for job purposes, they can get a chest x-ray.

2019 Update!

There are newer, easier, shorter regimens for treatment of active TB that are currently recommended. These may include daily rifampin for 4 months or once-weekly isoniazid and rifapentine [3HP] for 12 weeks. Please see these WA State Latent TB treatment guidelines for more information.

Links:

• FAQ from the CDC about TB screening for international adoptees

• Waiver options for children diagnosed with TB prior to adoption

Executive Functions in Adopted Kids

Julia Bledsoe, MD, just did a webinar on a hot topic in development and psychology: Executive Functions, which are higher-level cognitive skills that are frequently impacted in internationally adopted children.

Julie's talk is great - she gave it at our latest Resilient Rascals conference and at the national JCICS conference. She defines executive functioning, why it's vulnerable in our population of kids, and what you can do about it! You can see the webinar after a free registration with Children's Home Society & Family services here. Her teaser for the talk:

What can improve brain function? Many children adopted internationally and domestically have learning difficulties, specifically problems with higher order learning – what we call “executive functioning”. There are now many programs that claim their systems and supplements improve executive functioning. I will review these programs and the evidence about whether or not they work.

Trends in Ethiopia Adoption

Thanks to "Mr Personality" and family

A really exciting development we have seen in international adoption in the last few years has been an increasing number of children being adopted from Ethiopia, and wow, are they beautiful! To give you an idea, US government statistics tell us that while there were 42 children adopted in the US from Ethiopia in 1999, the number went up to 2,277 in 2009!

We have definitely felt this trend here at the Center for Adoption Medicine. In addition to our center doing many preadoptive consultations, I have had the pleasure, personally, of taking care of lots of these kids once they have come home. It is an interesting and varied group of children. There seem to be two distinct groups being adopted from Ethiopia. First, the infants who are coming into care soon after birth, and often, coming home even before their first birthdays. Then there are the older kids who come after one or both parents have perished, and these often arrive in sibling groups.  

There is a rumor out there that all the kids coming from Ethiopia are healthy and have no issues, and this simply is not the case.  The variability in health status and medical/developmental issues uncovered both on preadoptive consultation and after they come home is quite large. As with any country of origin, every child is different. There have been a few interesting trends, however. While we see latent tuberculosis (i.e. requiring treatment and infected but not yet sick or contagious) fairly frequently in all of our adopted kids, we have seen quite a bit of active tuberculosis (a life threatening illness, which can be contagious depending upon type of illness and age of the child) in some of our adoptees from Ethiopia. This has ranged from a child who was very obviously ill upon arrival, to a couple of siblings who passed screening in Ethiopia as having latent TB, looked and acted great, but both had active tuberculosis when rechecked in Seattle. Careful scrutiny of in-country testing, and rescreening once home is definitely prudent; and yes, even the kids who come home looking great are subjected to the same battery of tests that we do on most international adoptees, as we pick up all sorts of things that are not apparent on exam or history!

The other illness we are seeing more of is hepatitis A. This is an interesting one in that most young children can have the illness with no obvious symptoms. They do great. The problem is that it is very contagious and it is a more severe illness the older the patient is. This means that unimmunized contacts such as parents, siblings, cousins, grandparents, etc. are at risk. There was recently a  case of a grandma who caught hepatitis A from her totally healthy-appearing 1yo newly adopted grandkids from Ethiopia. She nearly died, and they only found out that the twins had hepatitis A when they were trying to figure out how she became infected. Of note, she did not travel to Ethiopia, she visited them once they got home!  

It is currently recommended that all contacts of internationally adopted kids be vaccinated against hepatitis A, not just those that travel. While we have seen more cases in our Ethiopian kids, we only recently have been widely screening for it, and there is a high rate of hepatitis A in all the coutries from which we typically see international adoptees. HIV is another infection that is seen at a high rate in Ethiopia. We have seen a small number of patients with known HIV positivity, but fortunately have not yet been surprised by an undetected case.

Some other issues to think about in Ethiopian adoptees include female circumcision (or female genital mutilation) and transracial adoptive issues. Female circumcision is still practiced in parts of Ethiopia, especially rural areas. It can vary from some ritual cuts to removal of various structures that can significantly affect sexual and reproductive functioning. I have seen only a few cases and only one which was not known to the patient, her older sisters, or the adoptive family. It takes a pretty complete examination of the external genitalia to see some of these. Many older Ethiopian adoptees are frankly horrified at the idea of being fully examined by a doctor, as this is not something typically done in Ethiopia. Sometimes it takes a few visits before a full exam can be comfortably done. Specialized care by an OB-GYN with some knowledge of this will be important for these girls. 

Transracial/transcultural adoption issues come up for most of our international adoptees. In kids of African descent adopted by non-black families, it can be a more prominent issue to society as a whole. Then there is the added level that many of our kids will be perceived to be of African-American descent, which is not how many of them see themselves. We are fortunate in Seattle to have a large Ethiopian community (and growing Ethiopian adoption community), so incorporating Ethiopian culture into one's family life is easier. For those living far out from the big city, reaching out to other adoptive families and Ethiopian communities is thought to be really helpful.

Lastly, let's talk about hair. Yes, hair. The care of African hair seems to be a science onto itself. I do not pretend to be an expert but have heard lots of tips, including saturating the hair with grapeseed or olive oil prior to shampooing and not washing it more than once a week. Many of our families have found support on the Adoption Hair and Skincare Yahoo! Group.

All in all, these kids have been a joy to work with.  The courage and resilience of the older kids never ceases to amaze me.  Every day it seems I think I have seen the most adorable, compeling child ever.

Testing for Chagas Disease?

A number of parents with children adopted from Guatemala have contacted us asking about a page on the CDC website that says that testing for Chagas disease "may be appropriate" for children adopted from many parts of Mexico, Central, and South America.

What is Chagas Disease?

Chagas disease (American trypanosomiasis, more good info here) is an infection caused by Trypanosoma cruziprotozoa that is most common in rural, impoverished regions of Argentina, Belize, Bolivia, Brazil, Chile, Colombia, Costa Rica, Ecuador, El Salvador, French Guiana, Guatemala, Guyana, Honduras, Mexico, Nicaragua, Panama, Paraguay, Peru, Suriname, Uruguay, and Venezuela. The following information is adapted from the AAP Red Book, a resource for pediatric infectious diseases.

T. cruzi parasites are transmitted through the feces of a kissing bug (how romantic) that tends to defecate while biting, and said poop gets rubbed into the bite or mucous membranes of the bitten. Acute infection is often asymptomatic, although children are more likely to show signs than adults. Acute infection may consist of a nodule, or chagoma, at the site of inoculation, or a swollen eyelid. Fever, enlarged lymph nodes, or malaise may develop; more serious acute symptoms are rare. Most cases of acute Chagas disease resolve in 1-3 months, followed by an indeterminate period of chronic, asymptomatic infection.

The worrisome part about Chagas disease is that in 20-30% of cases, serious heart or gastrointestinal complications develop many years (or decades) after the original infection. The heart problems can include enlarged heart, arrythmias, and congestive heart failure, and are possibly fatal. The GI problems may include dilated esophagus or colon. It is an important cause of death in South America, where it is estimated that 8-10 million people are infected. In the US, blood bank screening in areas of the US where donors were expected to have undiagnosed Chagas disease found 61 positive donors out of 150,000 samples.

Chagas can also be transmitted in utero, occasionally producing symptoms like low birthweight, enlarged liver or spleen, or brain inflammation with seizures or tremors. However, most congenitally infected infants are asymptomatic. If diagnosed, antitrypanosomal treatment available from the CDC is effective, and recommended for all cases of acute, congenital, reactivated and chronic Chagas disease in children under 18 years of age.

Chagas in International Adoptees?

So what should we do about children adopted from countries where trypanosomiasis is prevalent, who were potentially exposed either during pregnancy or from insect bites? I spoke with an expert at the CDC, who says that they added Chagas disease to the list of conditions that should be considered for adoptees when a few teenagers adopted from South/Central American countries screened positive for T. cruzi infection when donating blood. We do not have any firm numbers on the prevalence of chronic Chagas disease in internationally adopted children.

The International Adoption Center at Cincinnati Children's is conducting a study which may shed some light on the prevalence of Chagas in Guatemalan adoptees, but we still may not get definitive numbers, as the study uses a convenience sample rather than screening all adoptees as they come through (pretty hard to do for Guatemala, since they're here already). If you can get to Cincinnati, you may be eligible for their study.

If parents/providers are interested in screening a child adopted from one of the countries above, the CDC is willing to run the tests. There are regional differences in Chagas risk within each country, but it's often a bit fuzzy which region the birth mother and child came from, so the CDC is willing to test any child from those countries.

Testing for Chagas

There is no perfect test for Chagas chronic infection. Currently, antibody screening is what is recommended for adoptees over 1yo, since other Chagas testing (microscopy, PCR, etc.) is meant for active or recent infection. The CDC performs two antibody tests, combining an ELISA antibody screen with good sensitivity, and an IFA test with good specificity (well, leishmaniasis cross-reacts, but picking that up could be a good thing). Commercial labs currently tend to offer just one test. The Ortho ELISA currently used by blood banks is excellent, but while approved by the FDA, it has not yet been released commercially.

Your provider and lab will need to contact their State Health Dept about getting the samples to the CDC, but the CDC testing part is free. It should only take a few mL's of blood. Drawing, sending, & reporting the tests likely won't be free, though, and insurance companies may try to evade paying for that. If so, point them to the CDC website or the AAP Red Book's section on Medical Evaluation of International Adoptees:

Chagas disease is endemic throughout much of Mexico, Central America, and South America. Risk of Chagas disease varies by region within countries with endemic infection. Although the risk of Chagas disease is low in internationally adopted children from countries with endemic infection, treatment of infected children is highly effective. Countries with endemic Chagas disease include Argentina, Belize, Bolivia, Brazil, Chile, Colombia, Costa Rica, Ecuador, El Salvador, French Guiana, Guatemala, Guyana, Honduras, Mexico, Nicaragua, Panama, Paraguay, Peru, Suriname, Uruguay, and Venezuela. Transmission within countries with endemic infection is focal, but if a child comes from a country with endemic Chagas disease, testing for Trypanosoma cruzi should be considered. Serologic testing should be performed only in children 12 months of age or older because of the potential presence of maternal antibody.

For questions regarding diagnostic considerations, your providers can contact the Division of Parasitic Diseases Public (770-488-7775; email chagas@cdc.gov). For questions about laboratory testing for parasitic diseases at CDC, they can email the lab directly at dpdx@cdc.gov; however, all testing requests should be routed via the state health department. This website gives more detail on how to access DPDx services.

Should you test?

I honestly don't know. The experts don't have a firm recommendation. We don't know how common Chagas is in our adoptee population. There haven't been a lot of cases, but then we haven't really been testing, other than at blood banks. If diagnosed, it's treatable, and worth treating. On the other hand, it's a blood draw, may involve some cost, and there's the possibility of a false-positive result.

If it were my child, I might not rush them off to the lab for a test, but if we had another reason for a blood draw, I'd probably add this test. Otherwise, I think that since the risk of Chagas infection is felt to be low, and because there is typically a "grace period" of years before long-term complications happen, I would be comfortable waiting a few years for more data. After all, the results of the Cincinnati study may nudge this waffley recommendation one way or the other. But that's my opinion; as with all info and advice from the internets, please discuss this issue with your health provider.

As for parents who traveled to higher-risk countries, I've not read any recommendations that casual travelers with no symptoms of Chagas be screened, especially folks who didn't "go native" for extended periods of time.

Thanks to Susan Montgomery, DVM, MPH and Paul Lee, MD for their expertise!

Advocating for Your Child's School Needs

At our recent adoption and foster care conference, Raising Resilient Rascals … Takes Flight, we had a panel discussion that was so full of useful tips that I couldn't resist sharing them here. Thanks so much to our panelists: Julia Bledsoe, Larry Davis (of www.specialeducationadvocacy.org), Lisa Konick-Seese, Gwen Lewis and Kate Molendijk. Some of their "pearls" follow, but first, some basics:

Getting Started

For children under three with developmental concerns, parents can (and should) call their local Early Intervention (also know as "Birth-to-3", or "ITEP") Center. You don't need a referral to start the process. They should do any necessary screening tests, and if your child falls below a certain threshold, they will qualify for subsidized developmental therapies. Increasingly, the center's therapists will meet the child at their home or child care center to provide these services. Find out more here.

For children over 3, your local school district is responsible for developmental screening and providing supports, even if your child isn't in school yet, or is home-schooled, or attends private school. In the latter cases, accessing those supports may not be easy or convenient, but it should be possible. Contact your school district's "Child Find" office to initiate this process.

IEPs and 504 Plans

If your child has a documented disability, which has an impact on your child's education, then your child should be eligible for either 504 Plan accommodations, or an Individualized Educational Plan (IEP).

Generally speaking, if tweaks to general education are deemed adequate to meet your child's needs, a 504 plan will be suggested. One drawback to 504 plans is that the school is not so accountable, oversight being at the federal level.

If your child needs more significant "specially designed instruction," then they should receive an IEP. With an IEP, the school is more accountable (oversight tighter, at the state level).

General School Tips

• It helps to develop an ally or friendly resource at the school that seems to understand and appreciate your child. This person can be invaluable for informal mediation, advocacy, advice about next year's classroom, and so on.
• Invite the teacher to dinner once a year. This used to be common, and some teachers still do it, in the younger grades. It gives them a more holistic sense of your child, and helps build a collaborative relationship.

Tips for IEP Meetings

• IEP meetings, especially your first, can be very stressful for parents, and it's easy to feel powerless, unable to effectively advocate for your child. These tips should help.
• Make sure you "check your own pulse" before the meeting starts. It's natural to feel defensive, or scared, or upset at how things have been going (or not going). You may find that you're in revved-up "mama bear" or "papa bear" mode. That's understandable, but also counter-productive. Make sure you're as calm and centered as possible, and use some of the following strategies to advocate for your child.
• The room may be packed with professionals, but remember that you are the expert in your child.
• Feel free to "stack the deck" in your favor at IEP meetings.
• Bring friends, support, other caregivers, prev. teachers, consultants.
• If you've developed an ally at school, have them there if possible.
• Bring treats. Break bread together. It can't hurt.
• Consider passing around a sign-in sheet (if unfamiliar folks will be there), with phone/email info for later contact.
• School culture can be geared toward "no", especially in these budget crunch times. Build a succession of yes's about your child first, instead of starting with your requests or demands.
• Do that by creating a sense of shared understanding, based on data if possible, about your child's unique background, weaknesses, and strengths. You and the staff should be recognizing your child in what each other has to say: "Yes, that's my child/student." Then the requests should flow more naturally and collaboratively.
• Then again, it may take 3-4 meetings for some staff to "get it." Call followup meetings if need be (it's your right, when you have an IEP), until they do.
• Before a school transition, have a meeting the preceding spring with a representative from the new district/school, to develop the IEP using folks that know your kid, and get a headstart on next year's plan.
• Think carefully about closing out an IEP, even if you decline services. They can be harder to get later.

School Bureaucracy

• School districts have strict timelines for responding to requests around evaluations and special education. Learn them, and keep track. 
• Use email or get copy of letter stamped at school when dropped off. This starts the clock ticking.
• Keep notes, folders for each child, or email folders, to a court-worthy standard (dated, no missing pages from notebooks, etc). Hopefully you won't end up there, but if you do ...

If Things Still Aren't Going Well

• You may consider an independent educational evaluation (IEE), a "second opinion" about your child's abilities.
• An educational advocate may also be useful.
• Consider formal mediation as well.
• Your child has the right to a "Free and Appropriate Public Education"; unfortunately, this does not equal a "Free and Perfect Public Education." We are not funding our schools as we should, and they have limited resources to meet the needs of many students. 
• Trust your instincts about whether this school or program is working for your child (but get some second and third opinions too!). Some families decide that private, parochial, or home-schooling is a better fit for their child's needs. This, of course, can be expensive, especially with added private therapists if those are necessary.

Resources

• NICHCY.org is my favorite website for disability and special education ​resources
• WrightsLaw is also an excellent resource for special education law, education law, and advocacy for children with disabilities.
• For local info, see the WA State official special education website.
• The WA State Office of the Education Ombudsman (OEO) "helps solve conflict and disputes between Washington families and elementary and secondary public schools so that students have every opportunity to stay in school and succeed." They are part of the Governor’s Office and function independently from the public school system.
• Another excellent source of info in our state is Kristin Hennessey, the Special Education Ombudsman at OSPI, at (360) 725-6075 or kristin.hennessey@k12.wa.us.

Raising Resilient Rascals ... Takes Flight!

We're back for our fourth year! All-new presentations on the most requested topics from previous years! At the Museum of Flight! It's a two-day conference with valuable information for foster/adoptive parents and professionals, presented by experts in the field.

Friday March 5th and Saturday March 6th, 2010

Friday, 9am-4pm:

Welcome - Julian Davies, MD 

Thank you for choosing us today and we hope you have a pleasant flight. Please turn off all electronics during today's flight.

Building Attachment in Infant and Early Childhood Adoptions - Kristie Barber, MSW

Parents traveling with small children may board the plane at this time.

Sleep and Adoption - Julian Davies, MD

The Captain will be turning off the cabin lights. Slides and resources here.

Understanding and Building Childhood Executive Functioning - Gwen Lewis, PhD

This is your Captain speaking, please direct your attention to the front of the cabin.  

Advocating for Your Child's School Needs - Panel Discussion

Please find information about today's flight in the seat packet in front of you. If you have any special needs, please contact a crew-member for assistance.

Saturday, 9am-4pm:

Building Healthy Parent-Child Attachments - Deborah Gray, MSW

Make sure that all baggage you have brought on today's flight is securely stowed. The crew will take you through some safety procedures.

The Importance of Self-Care for Parents - Deborah Gray, MSW

Put on your oxygen mask first before helping others with theirs.  In your in-flight magazine, you will find exercises you can do during the flight.

Emerging Health Issues - Cynthia Kertesz, MD

Upon arrival in customs, travelers should expect a screening for infectious diseases

Parenting the Adopted Adolescent - Paulette Caswell, MSW

We're expecting turbulence, so please keep your seat belt fastened at all times. For your own health and the safety of others, we ask that you observe the no-smoking signs at all times. 

Trans-Racial, Trans-Cultural Adoption Issues - Suzanne Engelberg, PhD

Your flight crew will be passing out entry documents you need to fill out before arrival in this foreign country.

Trans-Racial, Trans-Cultural Adoption - Panel Discussion

Have your passports ready for going through customs.

Details

Cost: $85 for one day; $155 for both days. In-flight lunches will be provided.

Venue: The Museum of Flight
9404 E. Marginal Way S

Seattle, WA  98108

Presented by: Center for Adoption Medicine at the University of Washington, Cascadia Training, Northwest Adoption Exchange, and Nurturing Attachments

CEUs: 7 CEUs per day, 14 total, no additional charge.

For more info or to register: Call 800-298-6515 or 206-441-6892, or visit www.cascadia-training.org

Flyer: Please share this flyer with your friends and colleagues!

Resilient Rascals Grow Up

Save the date! On Friday, March 6, 2009 (please note date change), at the Shoreline Center, we'll be hosting our third "Raising Resilient Rascals" adoption and foster care conference. We're still working on the precise lineup, but the general focus will be on older child and adolescent issues. Possible talks:

• When to worry about mental health issues versus "normal" teen behaviors
• "Parenting Pitfalls" vignettes and open mic, with booby prize for best worst parenting moment
• How adopted adolescents construct their identity, and how to help
• Living with an older child with executive function difficulties - practical tips
• A mother and adopted daughter discuss transracial adoption
• Adult adoptee panel

Details to follow ... stay tuned! And feel free to just go ahead and register.

Help for the Holidays - Deborah Gray

Deborah Gray, MSW, MPA, author of Attaching in Adoption and Nurturing Adoptions and therapist extraordinaire, has shared a nice set of handouts for the holidays with us, reproduced here with kind permission. They're written for parents raising kids affected by histories of neglect, trauma, and anxiety. She has two slightly different versions, one for parenting kids with trauma histories, and one for children with anxiety. Good stuff to think about as a particularly stressful holiday season is upon us. I hope you find something helpful here, and we at the Center for Adoption Medicine send you happy and as-relaxing-as-they-can-be holiday wishes.

• Help for the Holidays - Trauma Version
• Help for the Holidays - Anxiety Version

Melamine and Chinese Adoptions

What We Do and Don't Know About Melamine

As details of the melamine contamination scandal continue to emerge, many of our pre- and post-adoptive parents are wondering how potential exposure to this chemical may affect their child. I wish we knew more. But I'd like to start by offering some general information about melamine, and some tentative guidelines about how to manage this issue.

Melamine is a chemical with a number of industrial uses, and an already scandalous history as one of the major contaminants in the 2007 Chinese pet food debacle. It is suspected that it was added to milk at milk collecting stations in China to disguise the fact that milk was being watered down, since melamine artificially increases the testable protein content. We don't yet know how long this has been a problem. According to Sanlu, a popular budget formula manufacturer implicated in this event, contaminated milk was used in the manufacture of infant formula processed before 8/6/08, as well as in other dairy products like liquid milk, frozen yogurt, and coffee creamer.

There is essentially no reliable toxicology information about melamine and human consumption. The animal data suggests that it is not metabolized in the body, and is excreted in urine. At high doses in animals, it can cause bladder stones, and inflammation of the bladder. Over time, this may be carcinogenic, but we have no human studies to evaluate this risk. 

The high number of serious kidney complications and deaths in pets exposed to contaminated food has been linked to the particularly toxic combination of melamine and cyanuric acid. We have not seen reports of cyanuric acid in human-consumed milk products, but it can be a contaminant in melamine products.

What is additionally confusing is that in animals, melamine alone can cause bladder stones (a mixture of melamine, protein, uric acid and phosphate), but has not caused kidney stones or kidney failure. The preliminary reports from China, however, do indicate that a small fraction of children who received contaminated formula have been diagnosed with kidney stones, reportedly containing uric acid. We are told that 4 infants have died, perhaps from obstruction of their kidneys from such stones, and 150 children have had renal failure. I don't know what to make of the high number of reported hospitalizations (over 14,000), and suspect that some of those may have been for workup and not because of illness.

Symptoms to Watch For

Please keep in mind that recently adopted children have plenty of more common and benign reasons for crying. That said, here are some things to watch for that would deserve prompt evaluation:

• Unexplained crying episodes or abdominal pain, especially with urination
• Passing blood, crystals, or particles in urine
• Dramatic decrease in urine output
• Swelling of the hands, feet, or around the eyes (edema)
• Pain when tapped over the kidneys
• Unexplained lethargy or vomiting

Our Evolving Approach

What remains unclear is which children deserve what workup. I'll cover our clinic's current approach here (which may be updated as consensus evolves and new information becomes available):

• So far, we are checking a urinalysis with microscopy (to look for blood or crystals), and an electrolytes/BUN/creatinine panel (to look for signs of impaired kidney function) on all new Chinese adoptees. We may also add more routine ultrasound of kidneys, ureters, and bladder to look for stones themselves (see below).
• Many of our previously adopted children have had some of these tests, but we are asking any symptomatic children (see above) to come in for urine & blood testing, and for an ultrasound, or perhaps CT scan if our suspicion is very high.
• Children who came home from China in the past 3 or so years (vague because we don't know how long melamine has been a contaminant) who are asymptomatic should probably have at least a non-urgent urinalysis, if they have not previously had one. If they've been growing well and are asymptomatic, and have no other reason to need a blood draw, I'm not convinced that bloodwork is necessary. But we may start ultrasounding more routinely for this group as well.
• A reasonable diagnostic code to use would be V87.39: contact with and (suspected) exposure to other potentially hazardous substances (for asymptomatic children), or codes based on a child's specific symptoms.
• As for specific testing for melamine itself in blood or urine, we are not doing that at this time. Such testing is investigational and hard to come by, and given the expected fairly rapid excretion of melamine, may not be of much clinical use. Plus, children may be exposed to insignificant amounts of melamine from other sources, which would complicate interpretation of results.
• Treatment of children with stones may involve close observation, IV fluids and urine alkalinization, medical management of acute renal failure if present, and various procedures to break up and remove recalcitrant or obstructing stones.

What is currently controversial is whether ultrasounds should be a routine screening test for asymptomatic Chinese adoptees with normal urinalysis. Thus far, we're not sure, and we have a low threshold to order ultrasounds if we're not sure about the "symptomatic" part, and are happy to order them for concerned parents. There have been several reports of renal stones diagnosed by ultrasound in otherwise asymptomatic children with normal urinalysis and bloodwork. If more of these are confirmed, we probably will start routinely ultrasounding. What remains unanswered is how common are these cases, and what needs to be done if asymptomatic stones are discovered.

We are in discussion with our local kidney and urology specialists, as well as other adoption docs, about the advantages and drawbacks of more universal ultrasound screening for Chinese adoptees. There are other radiographic approaches, such as a CT KUB (non-contrast) or CT urogram (with contrast), which can give better resolution for children in whom we highly suspect stones based on symptoms or labs, but the substantial amount of radiation exposure (and cost) with CT scans makes them unattractive for routine screening.

We've not yet seen any children in our practice with diagnosed kidney stones or other complications. According to informal data from Half the Sky, less than 5% of exposed children in the orphanages they work with have been diagnosed with kidney problems. And without stones and renal complications, we think it unlikely that melamine-exposed children will have significant long-term impacts. But we will keep you posted here as we learn more. And as always, please do involve your child's medical provider. Their opinion on this as-yet-fuzzy issue may not be the same as ours, and they know your child better than the internet does.

Useful Melamine Resources

• The World Health Organization (WHO) has an excellent overview of melamine contamination in China
• The Hong Kong Journal of Pediatrics has published an excellent melamine overview and editorial (pdf), with new details and thoughtful analysis (link courtesy of Dr Gordina)
• The New England Journal of Medicine has a good overview of the global implications of the melamine contamination scandal
• JCICS has posted a helpful FAQ, including some reports from Half the Sky about affected children in their orphanages
• The Canadian Public Health Agency has a helpful set of melamine resources
• Our Centers for Disease Control (CDC) has a good FAQ as well
• "China Milk Issue" YahooGroup, an active listserv of concerned parents (and a few docs), with database of their test results
• Parent-organized survey collecting preliminary data regarding results of tests on children adopted from China who may have been exposed to melamine. Please consider adding your information here, to better understand the scope of the problem.

Recommendations from the Chinese Ministry of Health:

(via the WHO, as of 10/08 - check here for updates):

The World Health Organization has agreed to circulate the information contained herein regarding the treatment plan that is being implemented in China by the Ministry of Health. The information below does not reflect the rules, regulations, policies and guidelines of the World Health Organization.

The following regimen has been issued by the Ministry of Health, China.

Clinical manifestations

• Unexplained crying, especially when urinating, possible vomiting
• Macroscopic or microscopic haematuria
• Acute obstructive renal failure: oliguria or anuria
• Stones discharged while passing urine. For example, a baby boy with urethral obstruction with stones normally has dysuria
• High blood pressure, edema, painful when knocked on kidney area

Key diagnostic criteria

• Been fed with melamine-contaminated infant milk formula
• Having one or more of the above clinical manifestations
• Laboratory test results: routine urine tests with macroscopic or microscopic haematuria; blood biochemistry; liver and kidney function tests; urine calcium/creatinine ratio (usually normal); urinary red blood cell morphology shows normal morphology of red blood cells (not glomerular haematuria); parathyroid hormone test (usually normal).
• Imaging examination: preferably ultrasound B exam of urinary system. If necessary, abdominal CT scan and intravenous urography (not to be used in case of anuria or renal failure). Kidney radionuclide scans can be used where available to evaluate renal function.
• Ultrasound examination features:
  • General features: bilateral renal enlargement; increased echo on solid tissue; normal parenchyma thickness; slight pyelectasia and calicectasis; blunt renal calyx. If the obstruction locates in the ureter, then the ureter above the obstruction point dilates. Some cases have edema with perinephric fat and soft tissue around the ureter. As the disease develops, the renal pelvis and ureter wall may have secondary edema. A few cases have ascites.
  • Stone features: most stones affect the collecting system and ureters on both sides. Ureteral stones are mostly at pelviureteral junction, the part where the ureter passes across iliac artery, and ureter-bladder junction. Stones stay collectively, covering massive areas. Lighter echo in the background. Most stones are different from the calcium oxalate stones. Urinary tract is mostly completely obstructed by the stones.

Differential diagnosis

• Haematuria differentiation: need to rule out glomerular haematuria.
• Stone differentiation: the stones are normally radiolucent and have a negative image on urinary tract x-ray. This feature differentiates the stones from those of radiopaque stones of calcium oxalate and calcium phosphate.
• Differentiation of acute renal failure: need to rule out pre-renal and renal failure.

Clinical treatment

• Immediately stop using melamine-contaminated infant formula milk powder.
• Medical treatment: use infusion and urine alkalinization to dispel the stones. Correct the water, electrolyte and acid-base imbalance. Closely monitor routine urine tests, blood biochemistry, renal functions, ultrasound findings (with particular attention to the renal pelvis, ureter expansion, and the change of the stones in shape and location). If the stones are loose and sand-like, they are very likely to be passed out with urine.
• Treatment of complicated acute renal failure: priority should be given to the treatment of life-threatening complications such as hyperkalemia. Measures include the administration of sodium bicarbonate and insulin. If possible, blood dialysis and peritoneal dialysis can be used early. Surgical measures can be taken to remove the obstruction if necessary.
• Surgical treatment: if medical treatment is not effective, and hydrocele and kidney damage present, or blood dialysis and peritoneal dialysis are not available in case of renal failure, surgical methods can be considered to remove the obstruction. Stones can be removed by different methods including cystoscope retrograde intubation into the ureter, percutaneous kidney drainage, surgical removal and percutaneous kidney stone removal. Extracorporeal shock wave lithotripter (ESWL) is greatly limited in its application, because the stones are loose and mainly composed of urate, and the patients are infants.

Follow-up

Once the urinary obstruction is relieved, and the general condition and renal function and urination are back to normal, the children can be discharged.

Key issues to follow-up

Urine routine tests; ultrasound of urinary system; renal function tests; IVP (intravenous pyelogram) if necessary.