We just got back from our brief tour of the Mongolia countryside and I am sure there is no other place on Earth like this.  It’s easy to understand Jonathan’s fascination with the  vast open prairies and steppes that stretch from one end of the horizon to the other, with no signs of any people except for an lonely ger tent nestled up to a flowing river,  clean bright blue sky, and herds of hundreds of goats, sheep, cows and horses roaming through the the open fields.  If the days are spectactular, the nights are are even more so.   I have never seen so many stars.  With no city lights or pollution to obscure the view,  we can easily see the Milky Way, satellites and shooting stars.  Adam had a cool app on his cell phone to find the constellations and Dr. Mike got an astronomy lesson.

If you think you know what ‘dirt roads’ are, you have never been to Mongolia. Only 3% of the roads are paved for an area twice the size of California. The dirt roads consist of tire tracks that cross the steppes, and are riddled with pot holes, deep fissures, gullies, that cross streams and small rivers, that we drove for hours and hours, seeming endless.   After a sour sip of airag (fermented mare’s milk) at a local ger, and the ups and downs and sudden lurches of the famous Russian van,  a sensation of motion sickness set in.  Hoping not to further embarrass myself in front of my colleagues, I fought the nausea.   Fortunately the first ‘tourist ger camp’ was not far away.  However this ger camp left little to be desired.  The five of us were put in one cabin, with no heat or showers, hard cots with scratchy blankets and ‘primitive’ latrines nearby.   Those who stayed before us apparently liked airag, as the nauseating scent was still heavy in the air.   That smell along with the chill in the air, and the ever present mutton for dinner,  made it a long night.    However the scenery was unbelievable and after a brisk morning walk in the cool air, around the lake where Genghis Khan was named the ruler of Mongolia,  we left for the next ger camp.

Drinking airag (fermented mare’s milk) in a family’s ger

Heart-shaped mountains where Genghis Khan was named ruler of Mongolia

After another 8 hours of dirt roads, we came to the next ger camp, which was like the Ritz Carlton of ger Camps!  Spectacularly located on a river, we had electricity,  hot showers (only from 7-9 pm), real potties and well appointed gers.  We spent a day there, rafting down a river and hiking up the amazing hills and steppes.  We had signed up to go horse back riding one afternoon.  Unfortunately there were only 3 horses for the 5 of us.  Hence they offered us a compromise by offering the rest of us to ride on a cart pulled by a yak.   The yak, which was really an old cow, walked painfully slowly and hit every rock in the road.  All of us were sore that night, either from the bouncing of the yak or the horse riding. Dinner was once again mutton and I had to sneak a can of tuna fish brought from the USA to keep me going.

-Harry Abram

I guess I still must have some jetlag as I am up and ready to go at 5:30 am.
The street outside the hotel, ironically called Peace Avenue (as it is anything but peaceful) is just now becoming congested with cars honking and kicking up the muddy water from last night’s rain.

I have been kept busy everyday.  We walk 30 minutes up the hill every morning to the children’s hospital.  Once there I head off to the pediatric neurology floor.  When I arrive at 9:00 am, there is already a line of 15 anxious families patiently waiting.  I have been lucky to have a pediatric neurology resident with me the entire time, who speaks English well enough to translate.  This morning,  before  I saw my 1st patient, the Mongolian neurologists proudly brought me my first glass of airag (fermented mare’s milk) and anxiously waited for my reaction.  I managed to take a couple of sips before politely returning the glass.  I asked if I could take some home with me to take to my family and colleagues at work, but they said I would have a hard time with it in customs, so I left the jar behind.  They promised to bring me some ‘byaslag’ -dried curds from the same mare’s milk, which I should be able sneak home!

With each patient,  the parents hurriedly walk in, holding their child in their arms.  One will carry a large plastic bag which contains a CT or rarely a MRI scan and their medical record-which is a small pamphlet of their doctor’s past handwritten notes (no EMR here!).   They quietly sit down at a small card table in the middle of large office space that 5 child neurologists share, no  examining  room or privacy.  Each family then explains the child’s problems to the neurology resident,  who then explains them to me.  Most of the patients are relatively complicated, with a  wide range of pathology: children with seizures of various types,  brain malformations, severe dystonia and several cases of kernicterus, which I have never seen before.   Many have cerebral palsy due to birth related complications.  Some of the diagnoses I don’t understand, such as ”hypertension of the brain’ , treated with ‘Russian medications’ to ‘increase cerebral blood flow’. Clearly they don’t have increased intracranial pressure and the medicines appear to be  various homeopathic vitamins.

I am surprised at the number of children with MRI scans,  which cost the patient 200,000 tugrik (about $150) however that is still about a month’s pay for many families.  The EEG’s are of poor quality and difficult to interpret.    However, the most valuable ‘test’ for epilepsy has not been EEG’s and CT scan’s but cell phone videos of children having spells or seizures.  Some children clearly have epilepsy but others appear to have tics or night terrors but regardless of diagnosis, all are routinely treated with 10 days of admission and placed on phenobarbitol or valproic acid (plus the mysterious “Russian medicine).   Lots of education to be done!

I have been impressed with the Mongolian families, who diligently wait outside in crowded hall way for hours to spend 15 minutes with an American doctor, carefully listening to everything that is said, and quietly nod their head at the conclusion,  often after discouraging news.  All have been extremely thankful and appreciative of the visit.  I was touched as one family gave me a 20,000 turgik bill and a box of candy,  both given to the adjacent orphanage.

-Dr. Harry Abram

A week from now, I will be midway on my flight to Mongolia.   The excitement and anxiety has been increasing daily over the summer.  Some of the anxiety is concrete and easily understood. After watching Andrew Zimmer, Bizarre Foods-Mongolia and  not being a fan of sheep eyeballs or entrails, nor fermented mare’s milk,  I was afraid either I would starve or insult host families by not following their cultural protocol.  Then  Dr Gayle  warned me  of the infamous Mongolian Death Worm.  However,  I have now been reassured that the Death Worm is just a myth and that if I get really hungry, that there is a Kentucky Fried Chicken nearby in Ulaanbaatar.

Ulanbaataar, capital of Mongolia

Most of my anxiety was more complicated.  When Dr. Sandler invited me to be a member of this team a year ago, my first thought was “ how can I,  as a child neurologist,  help the children  of Mongolia?  I have always been envious of my surgical colleagues who can travel to impoverished countries to fix cleft lips or repair malformed hearts.   Most of what a child neurologist does is order  tests , prescribe anti-seizure medications and reassure children and families. I knew that I could not take a case of anti-seizure medications nor pack away an EEG machine.   Over the past months, I have communicated with other neurologists who have gone to Mongolia, exchanged e-mails with Mongolian pediatricians and neurologists,  and reviewed data from the World Health Organization, and now realize that the greatest gift I can give to them is my knowledge of child neurology and in particular that of epilepsy.

Epilepsy is the most common neurological disorder worldwide, affecting over 50 million people.  It affects people of all ages, social classes, races and nationalities, with most cases beginning in childhood.  90% of these cases occur in developing countries, with limited medical and financial resources. It imposes enormous physical, psychological, social and economic burden on individuals, families and communities.

In the US there are over 20 anti-epileptic drugs, various devices and surgical options we can use to treat epilepsy.  There is a MRI scanner in every other shopping center in the city of Jacksonville. In Mongolia there are only 4 anti-seizure medications routinely available  and only 1 MRI scanner.  In America, epilepsy is considered a neurological disorder requiring many years of medications.  In Mongolia, epilepsy is considered a psychiatric disease, with all of the associated fear and stigma of psychiatric illnesses. The poverty and distances families must travel leads to inadequate and inappropriate therapy.

We know that up 70% of patients with epilepsy can lead a normal life if their seizures are properly diagnosed and treated. Most patients can be accurately diagnosed by history alone, without expensive technology.  Most epilepsy can be adequately controlled with inexpensive and commonly available medications, if properly dosed and maintained. My goals during this trip are to educate Mongolian physicians on what epilepsy is and is not and to teach them how best to use their currently available medications.

Three years ago, I had the opportunity to care for Jonathan Soud. He was a kind, thoughtful and precocious young man. I am thankful for this opportunity to reach out to the people of Mongolia and share my knowledge and honor the memory of Jonathan.

-Harry Abram