Resilient Rascals V: Interventions That Work

On March 4th & 5th, 2011, we're excited to help present our 5th annual adoption and foster care conference for parents and professionals, with topics and co-presenters near and dear to our heart.

This year's focus is on parenting and therapy approaches that work, either in research testing or our clinical experience, and will happen over a Friday/Saturday at the Community Center at Mercer View, on Mercer Island near Seattle.

Here's the lineup ... conference details and registration details on the Cascadia Training website. Sign up now, and spread the word!

• Fetal Alcohol Spectrum Disorders: Overview of Diagnosis - Julian Davies, MD, University of Washington
  Recent advances in neuro-imaging have brought new insight into the impacts of prenatal alcohol exposure.  The latest round of trials has suggested promising avenues for intervention.  A pediatrician from the longest-running FAS clinic in the country will review the basics of Fetal Alcohol Spectrum Disorders and explore how the brain can be affected by prenatal drinking.
• Insights on FASD Interventions - Heather Carmichael Olson, PhD, University of Washington & Seattle Children's
  The lead investigator for the Families Moving Forward FAS intervention research project will present their promising findings, as well as other evidence-based interventions for the fetal alcohol spectrum.
• Promoting Engagement, Emotional Regulation and Social Play for Young Children and their Families - Gusty-Lee Boulware, PhD, PEERS Play
  In this multimedia presentation, Gusty-Lee will share a variety of developmentally appropriate intervention strategies designed to support young children's social emotional growth and relatedness.  Specifically she will discuss activites to (1) enhance children's comfort with eye to eye gaze and referencing, (2) increase children's success with flexible social problem solving, and (3) help children maintaining a calm alert state.
• Collaborative Engagement between Adoptees and their Birth Countries - Julia Tombari, Adoptee/Student
• Family-Based Interventions for Children with Development Risk - Cynthia Heywood, PhD, Oregon Social Learning Center
  Multidimensional Treatment Foster Care (MFTC) is an evidence-based approach for supporting children with a history of maltreatment, neglect and developmental risk.  The program's aim is to stabilize children in a therapeutic family setting through comprehensive and intensive supports to the child and their caregivers. Dr. Heywood will also present the two innovative programs currently being developed and piloted: a time-limited foster parent training intervention with a therapeutic playgroup component for the foster child, and a strengths-based video feedback intervention for parents and caregivers of infants, toddlers and children with prenatal substance exposure and other high needs children.
• Treating the Whole Child not the Parts: Supporting the Rhythms of Relationships - Rosemary White, OTR
  When engaging in interactions with a child who presents developmental challenges that may be related to medical and or social emotional history prior to adoption, it is essential to constantly think about the "whole child."  This will guide us in our work with families so that we can support the physical, emotional and social development of the child.
• Tying the Interventions Together - Deborah Gray, MSW, MPA, Nurturing Attachments

Refreshments and boxed lunch included each day. We have lowered this year's fee and there is a limited scholarship fund to help reduce costs for those that can't afford the full fee. 

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 but these have not yet been approved in children, and it is unlikely that they will be approved in children under 5 years of age in the near future.

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.

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.

So download the handout (big pdf), grab some popcorn and lots of caffeine (it's 50 minutes long), and enjoy:

This video is courtesy of Seattle Children's.

Thanks to "Mr Personality" and family

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.

We had an hour-long discussion that covered some familiar territory (signs of prenatal alcohol exposure, some country-specific-risks), and some new ground on promising new interventions for the fetal alcohol spectrum, as well as a brief overview of the impacts of other prenatal drug exposures. We again ran out of time, but I imagine we'll keep doing these, as they're fun.

• Stream this interview on their site
• Download as an mp3 "podcast"
• Or play it using this Flash embedded player:



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!

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

• WrightsLaw is 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.

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!

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

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.

We had an hour-long discussion about rough estimates of alcohol risk for various countries, the fetal alcohol spectrum, things to look for in a referral, how to address alcohol concerns post-adoption, and the long-term outlook. There's lots more we could have covered, but we ran out of time, so we hope to do this again in several months, focusing on post-adoption FASD issues. In general, I hope to get more audio and video presentations up on the site in coming months, including some highlights from our Raising Resilient Rascals conferences.

• Stream this interview on their site (ads and window resizing alert)
  
• Download as an mp3 "podcast"
• Or play it using this Flash embedded player:

We're very excited to be able to host Dana Johnson, MD, this year. Dr. Johnson directs the University of Minnesota International Adoption Clinic, which is the country's longest-running IA clinic. He has been a passionate advocate for children, and Dr. Bledsoe and I are fortunate to count him as a mentor.

Dr. Johnson and his colleagues have been responsible for much of the seminal research on international adoption. They've just completed an truly impressive study: the Bucharest Early Intervention Project, which is the first and hopefully the last randomized controlled study of foster care versus orphanage caregiving. Results have recently been published in Science, and Dr. Johnson has a remarkable presentation prepared on what they've found. Not to be missed - Dr. Johnson is a dynamic speaker, and this is a landmark study.

But wait, there's more:

• I'll be covering "The Nature and Nurture of the Brain", which will review the latest brain research, and how it can help us parent and advocate for fostered and adopted children.
  
• Paulette Caswell, MSW, will address domestic foster care research and outcomes.
  
• Stephen Glass, MD, will cover Sensory Processing and other facets of neurology that impact our kids.
  
• Gwen Lewis, PhD, will answer the question "Why Does My Rascal Go Ballistic?" with a talk on the executive functions, the brain skills that help us regulate our behavior.
• Julie Bledsoe, MD, will review research-based "Interventions for the Fetal Alcohol Spectrum".
• Margaret Cashman, MD, a child psychiatrist and sleep specialist, will present on the use of psychiatic medications in fostered and adopted children.
• We'll have a whole panel of folks addressing the ever-present problem of "Sleep and Adoption".
• In "Om a Little Teapot", I'll put you to sleep (in a good way) with practical techniques for relaxation and self-regulation.
• Deborah Gray, MSW, will present "Five Faves for Anxious Children", an upbeat skills-building workshop for parenting children with anxiety or traumatic stress.
• Plus plenty of time for Q&A, and we'll wrap things up with a panel to discuss some challenging cases.
  

As ever, we'll aim to be informative and entertaining, and to filter the latest research through a practical parenting lens. Sign up now at the Cascadia Training website! We hope to see you there ...
 

Causes of Friendship Problems in Fostered and Adopted Kids

Social skills problems in the context of foster care and adoption have not been well-researched, but the causes likely lie in a combination of:

• Lack of early secure attachments leading to more anxious/controlling behaviors in later relationships
• Rough and unsupervised early interactions with peers
• Poor social boundaries and judgement, difficulty reading others’ social cues
• A higher prevalence of impulsivity, ADHD, and externalizing (acting-out) behavioral problems
• Poor emotional regulation (quick to anger at perceived slights and rejection, etc)
• Delayed social/emotional development
• Challenges in social communication and language, making it hard to keep up with the increasingly fast-paced world of their peers

These risks are not shared by all of the adopted children that we see, but they are more common. In the world of social skills interventions, many of the participants are children (boys, usually) with ADHD, acting-out behavioral problems, or autistic spectrum issues. If you substitute "institutional autism", or general lack of appropriate formative social experiences, that's a combination of issues that fits many adopted and fostered children.

Patterns of Peer Problems 

The literature on social skills problems in general suggests that there are a few patterns of peer problems that are most worrisome, and deserving of intervention. Researchers in this field often categorize children by interviewing their peers to come up with how liked (or not) and influential they are. This all sounds a bit harsh, but no one knows better how children are doing socially than their peer group, and the categories that follow aren’t nearly as hurtful as peers can be. In this research context, children are grouped as:

• Average (well-enough liked and influential)
• Popular (desired as a friend and influential)
• Neglected (not influential)
• Controversial (both liked and disliked, also influential)
• Rejected (disliked)

Interestingly, “popular” as derived from peer ratings is not the same as just asking who’s popular. The “sociometrically popular” kids are well-liked, good problem-solvers, and trustworthy - a good friend. The “popular kids” are actually seen as dominant and “stuck-up”. Neglected children may be shy or less motivated to join peers; they seem do well academically, and can start over in new groups and shed the “neglected” status. Controversial children are sociable but tend to use more social aggression and hostility; this also may not be a very stable category over time.

Rejected Children 

But the “rejected” group is the most concerning. Children with rejected status in one group tend to be rejected in new groups as well. Without intervention, they are likely to stay rejected over time, and are more likely to have later difficulties with delinquency and adult maladjustment.

Children who are classified by observers as socially withdrawn, plus rejected by peers (thus, not withdrawn by choice), are more likely to have internalizing problems like depression and anxiety. There are two sub-groupings of boys who are “rejected”: rejected plus aggressive (verbal aggression, rule-breaking, etc), and rejected with odd, immature, or “quirky” behaviors. The rejected-aggressive boys are more likely to have academic difficulties and ADHD. Girls have rates of rejection similar to that of boys, but are a lot less likely to be referred to social skills interventions; it may be that rejected boys stand out more and have more externalizing behaviors, while rejected girls have fewer overt problem behaviors.

If this sounds like your child, you should consider learning more about how to help your child with play dates and friendships (since you’ve got the potential to make a big positive impact), and explore local options for social skills groups. Here are a few tips, but the resources that follow will be more helpful:

Help your kids with the basics of social interactions

• Teach your child learn appropriate social greetings-and-responses, and what degree of physical contact is appropriate for whom (how not to be a "space invader")
  
• Encourage and model use of positive statements like praise and agreement
• Help your kids learn to share a conversation (reciprocity)
  
• Practice these skills over and over and over
  

Help children have frequent, successful play dates

• For younger/less mature children, having shorter, more structured play dates can help
• Practice being a good host beforehand, and come up with possible activities that their guest may enjoy
• When it comes to games, emphasize shared fun over winning/losing, and "good sport" behaviors (make sure to model these as well!)
  
• As a parent, stay aware of how things are going without hovering

Support your child in making and keeping friends

• Make friends with neighbors with children, allow your kids to get to know each other
• Get to know the parents of your kids potential friends (and enemies!)
• Make your child's friends feel welcome in your home (greet them warmly, compliment them directly and to their parents when they pick them up)
• Socialize across generations: make time for extended family, hang out with other entire families together, look for a range of ages for your child to get to know. Such shared family gatherings can provide models of interaction, unhurried time for children to get to know each other, and can keep parents in touch with how their kids are doing socially.
  

Help your children deal with the pain of rejection

• Remember that some pain around peer issues is inevitable and a normal part of childhood; try not to overreact or get too caught up in your own issues
• Don't nurture resentments, add fuel to feuds, or attempt to coerce other children into including your child
  
• But do employ "active listening"; acknowledge and reflect back the emotions that you see your child having
• Once your child feels heard and understood, help your child with self-soothing strategies like deep breathing, muscle relaxation, and active play
• If bullying at school is involved, insist that it be appropriately addressed; most schools these days have policies, if not effective interventions, in place to deal with bullying
• If your child falls into the "rejected status" category above, seek further help (see below)
  

Resources for Families 

One book for parents that I’ve really liked is “Best of Friends, Worst of Enemies: Understanding the Social Lives of Children”. Several of the tips above come from this book, which deftly summarizes the research about how children’s friendships evolve as they mature, and has solid suggestions for each developmental stage. Another book is "It's So Much Work to Be Your Friend: Helping the Child with Learning Disabilities Find Social Success". But having a good book probably isn’t enough for children that fall into the socially rejected category. That’s where social skills groups come in ...

Social Skills Interventions 

Social skills interventions for children do exist that have been well-studied, and show measurable improvements in parent and teacher ratings of social success. One such intervention is Children’s Friendship Training, which was developed at UCLA. Some of their work has specifically looked at children with ADHD, ODD (oppositional-defiant disorder), ASD (autistic spectrum disorders), and even FAS (fetal alcohol syndrome). I like this approach, as they’ve evaluated it with the types of problems my patients have, they have a rigorous approach to testing their program in general, and they include an important parent educational component which helps the gains children make in group generalize to the rest of their lives.

There are two local groups I’m aware of that draw on this intervention for their social skills groups. One is BeFriended, which runs social skills and friendship groups in collaboration with Nurturing Attachments. The other is FASt Friends, a family support group for families impacted by prenatal alcohol exposure, who run Children’s Friendship Training groups for teenagers.

In the interests of full disclosure, BeFriended was started by my lovely and talented wife, Kim. I’ve been a bit involved with its conception ... for professionally selfish reasons, I’ve really wanted to see an adoption-savvy social skills intervention come to town! But I also want to be fair to the other good folks in town that I don’t happen to be married to. I’ve heard nice things about all of the following social skills practices, and I’m happy for people to post more in the comments. Choice is a good thing. Best of luck to all of our families that are struggling with this issue!

Puget Sound Social Skills Groups:

• BeFriended
• FASt Friends Teen Groups
• Wally’s Club
• Friendship Group
• Carla Brooks and Associates
• Your child’s school may have a social skills program or friendship group as well