Since it’s Tuesday, it another education morning for the doctors and we’ve asked to give this morning’s lecture again. Perhaps I should be clearer, though. The residents will give the lecture and since the neurologic examination had been covered last week, it was decided that giving a talk on the pediatric neurologic exam would be a worthwhile review for the doctors, all of whom are often called upon to evaluate children and, more specifically, neonates. Having our child neurologist here with the current group, this seemed to be as good a time as any to tackle this subject. Usha gave the lecture with Mark standing in as her demonstration “dummy” for the session. Needless to say, they both did a wonderful job and Mark now has another profession to fall back on should he sour on playing doctor.
Today had been set aside for us to see the group of Maasai that live near the Tarangire National Park gate and is a group that we have been seeing every visit now for several years. They live outside of the Karatu district which means that it would require of number of things to occur for us to hold a clinic there such as permission from the regional or district health officer and a formal site in which to hold the clinic. So, as an alternative, we have had the chief of the village bring us as many patients that can round up while driving around the village on his motorcycle. This is the same chief who had brought two teenage Down syndrome patients to me back in 2019, and though we had little to offer them medically, we were able to find vocational training for them at a rehab center in Usa River near Arusha.
With the help of a number of donors, we were able to completely fund their tuition at the school for two and three years, respectively, and now both Tajiri and Amani have both finished their education and are looking for jobs. Unfortunately, despite having training, getting a job in Tanzania is another matter, but hopefully with the help of their village and others in the area, they will find something that will work for them. There was never the hope that they would be self-sufficient, but rather contribute to the family’s income and make them less of a burden.
Chief Lobulu has been incredibly helpful in getting patients here who need to be seen by and many of them have had epilepsy that, once properly diagnosed, has responded incredibly well to the medications we have here. It is not easy for these patients to get to FAME other than the two times a year that we are here which does pose an issue not only for medication refills, or rather the cost of these refills, or to obtain laboratory studies that are sometimes necessary depending on the medication. Sustainability is the most significant issue that we have in treating our epilepsy patients as the cost of medication is the biggest factor by far in the overall cost of our clinics. Though we provide the doctor’s visit, any necessary labs, and at least a month’s worth of medication (often it is two or three months) for only 5000 Shillings (a little over $2 USD with today’s conversion rate), patients very often have a difficult time affording this small amount, let alone the cost of medications when they come back as these are not currently covered by our program.
Our ultimate goal has been to provide some further funding to subsidize this population of patients (epilepsy patients) for their medications. FAME’s philosophy, as well as my own, is that there always must be “skin in the game” for the patients, as this serves to prevent the perception that we’re a free clinic, which we are not and, for a dozen or more reasons, would be the absolute wrong thing to do in a country where access to health care is very limited. Doing so would immediately invite many of the sixty-million residents of the country to travel to Karatu for their free healthcare and the system would collapse instantaneously. With the help of both Kitashu and Angel, our social workers, we generally assess patient’s or family’s ability to pay for their treatment, whether it be a CT scan or medications, so very few patients are turned away without receiving the treatment that has been recommended. That being said, it is not uncommon for families to refuse treatment based on cost or to take patients out of the hospital early because of concern for the cost of treatment. Unfortunately, despite our best efforts and explanation, it often comes down to values and how a family or patient perceives the value of their health. This concept is also operative back at home where I commonly lecture the residents on differences in value systems and the fact that we cannot project our own values on those of our patients and though we may not always understand the decisions made by our patients, we must respect them just the same.
So, it is with this preamble that we began seeing our patients who came with Chief Lobulu from Tarangire, to be seen by our neuro team and many of whom have epilepsy. One of the patients, a young girl with primary generalized epilepsy who had been doing poorly on carbamazepine (as can often be the case with this medication and generalized epilepsy), returned to see us in clinic today. We had originally diagnosed and characterized her epilepsy by performing hyperventilation on her when she was much younger. Patients who have one of the primary generalized epilepsies, whether genetic or not, will often have hyperventilation induced absence seizures, or what used to be known as petit mal seizures, and appear as brief staring spells with loss of awareness and often associated with eye flutter. In the old days, we used to carry around a pinwheel with us when doing a Peds Neuro clinic, to help with hyperventilating patients, though now we just use a piece of patient and hold it in front of them to blow on continuously for three minutes. In my experience, they will typically have a brief seizure after about a minute of hyperventilation.
Another provocative maneuver that can be used is photic stimulation, which is a rapidly blinking light at various frequencies, though the seizures that it provokes can often be generalized tonic-clonic events and very scary for both the patient and family. This is typically done during an EEG to record more subtle events that can be captured and be of diagnostic utility. This is the basis for patients having seizures while playing video games as it has to do with the exact frequency of the flashing that is being presented, but only occurs in patients with underlying epilepsy whether previously diagnosed or not (i.e., a normal, non-epileptic patient will not have a seizure playing video games).
One of the young children was found to have bilateral cataracts that appeared to congenital. She was referred to Sehewa, who is one of our long standing nurse anesthetists who also doubles as our optometrist here at FAME and has been doing eye exams and refractions for glasses for a number of years. Glasses that have been discarded in the US have been sent over here for years through donors with the matching prescription for the lenses present, and then distributed for no cost to patients.
The number of patients coming from Tarangire was about 17 or 18 and kept us quite busy for the day as we had other patients that just happened to show up for the day or those who were sent to us from the general OPD. It was a quiet evening at home with our FAME dinner of macaroni and cheese with zucchini and lots of garlic. We had obtained some pili pili for the house which was also a nice addition.