Today is our last day of the big neuro clinic at FAME, which is the one that we announce to the town of Karatu and surrounding communities with the hope that we can have most of the neuro cases come in during these six days. Next week we’ll begin our neuro mobile clinic, traveling to the more outlying villages where FAME may still be accessible to patients by taking the local dala dala (mini bus taxis) or larger buses, but patients don’t often realize that they have a treatable neurological problem so that I look at these mobile clinics as something to educate these remote communities of what we do. As I have mentioned before, the clinic has been lighter than normal with the early rains, though we’ve still had some very interesting cases and it’s given the residents a chance to catch up on their Swahili and Iraqw.
Once again, I knew that a friend from Arusha was coming today and bringing several patients with him so that was a plus. We had lots of peds today for Susan and she was quite happy about that aspect of the clinic. Two young boys who were brothers were seeing her this morning and were quite interesting as the younger brother had very clear febrile seizures with a very normal developmental history and examination. The older brother, though, had epilepsy that from a seizure semiology standpoint was very much localization-related as the seizures had clear focality with head turning and he had been on carbamazepine that was working quite well for him. The significance of all of that is that we would have expected the two to have a more common primary generalized epilepsy if this were indeed a genetic epilepsy, but the fact that that the older brother had focality to seizures and that he had responded to carbamazepine, a drug that morning makes primary generalized epilepsy worse and which is avoided typically avoided in these patients.
This is the place where an EEG would be invaluable in both children, as it would have easily answered the question for us on the spot. Unfortunately, the EEG we have here is no longer operational, though hopefully this is something we will once again have available here in the future. Had the younger brother not had a sibling with epilepsy we would have merely diagnosed him with simple febrile convulsions and that would have been that. But with the older brother’s diagnosis, it would certainly increase his risk of developing epilepsy in the future, but not to the degree that would lead us to treat him at this point. We did suggest that he could get an EEG at Kilimanjaro Christian Medical Center in Moshi, which is the only center in Northern Tanzania with those services, or possibly Nairobi, though it wasn’t entirely necessary at this time. At the end of the visit, I had mentioned that they could contact me through my friend in Arusha who had brought them, but it turned out that they had actually come on their own as their father comes to FAME for his medical care and had been here on Wednesday and had seen our notices of the neuro clinic, so had decided to bring his two sons to see us today. We were so happy that they had come, though, as the younger brother may have been put on medication prematurely had he been seen elsewhere.
When we did finally get to see the patients my friend had brought from Arusha, one was a young four-year-old child who had spina bifida, a neural tube defect that can be of varying severity and most often is an incidental finding, but can also, in much less common cases, involve the lower portion of the spinal cord leaving a patient with severe neurological deficits. This young girl, unfortunately, had the less common, more severe form of spina bifida, causing her to have a flaccid paralysis of her legs as well as complete loss of bowel and bladder function and had had surgery on her back just after birth. In addition, she had had hydrocephalus at birth requiring a ventriculoperitoneal shunt so most likely had another condition called an Arnold-Chiari Type II that is very commonly found in association with the more severe forms of spina bifida. She was clearly delayed developmentally in addition to her other neurological deficits, but was very interactive with good speech.
In addition to the life altering neurological deficits that she had, the other very sad issue was that her parents came here with the hope that we would have some type of treatment for their daughter. When Susan asked what their expectations were and they replied that they hoped that something could be done to help their daughter eventually walk and be independent, Susan’s heart dropped as she had to tell them that she would never walk, but could someday hope to use a wheelchair and still have some independence, perhaps. Though you can never be entirely certain as to what patients and families have been told in the past as people often hear what they want to hear, her parents were quite clear with us that they had never been told this before so I am sure that it was quite devastating for them to have heard this in no uncertain terms. Susan waited some time for them to digest the news that she had given them and then allowed them to ask as many questions as they had. There is absolutely no difference culturally in this part of the job and we could have easily have been at home delivering the same devastating news to parents with the very same reaction. This is not an easy part of the job, but is a very satisfying one when you are able to spend time and deliver the news with empathy and grace.
Meanwhile, Johannes was in the ward for much of the morning with a difficult patient that we had been asked to see for symptoms that were more concerning for a psychogenic illness, though after seeing him it was not so black and white. The young man had been having episodes that had been very anxiety provoking for him, but were felt to very possibly be cardiogenic in nature and related to either drops in blood pressure or alterations in his heart rate with the episodes. There is a disorder known as postural orthostatic tachycardia syndrome, or POTS, that is often the bane of neurologists, as it is unclear from our standpoint that it even exists, yet is so very often diagnosed and patients are labeled with this. Johannes felt very strongly, though, that this young man had some condition that affecting his blood pressure and pulse that were causing his episodes and that they were not purely psychogenic in nature. It was very helpful as this had been a significant management problem previously for this patient and now at least they would have something to focus on as far as treatment options going forward. These are quite often very difficult situations to figure out and there is often much that is lost in translation with the language barrier when trying to make these distinctions that are so important as they greatly affect the management of these patients. We do see quite a bit of psychogenic illness here, easily as much if not more than at home, and it can very often be quite challenging.
Susan had plenty of children today to fill her schedule and at one point, realized that she was behind in her charts and needed to do some catching up so it is clear that some things don’t change whether you’re on electronic records or not. During the middle of the day we had a tremendous thunderstorm with lots of lightening and thunder that seemed to be right on top of us dumping buckets of rain with bright flashes of light followed by their thundering booms that shook everything and could be felt throughout your entire body. For at least half an hour, it seemed like the heavens had let loose with all they had to give at the moment. As quickly as it began, though, it ended and the mud and puddles quickly dried as if nothing had happened and the world was right again. Blue skies and sun eventually appeared and we were quickly back in paradise.
We are prepared dinner here at FAME during the weekdays, but on weekends, we are left to fend for ourselves. The weekday dinners are quite delicious and healthy, for the most part, except for perhaps the mac and cheese that is a bit more westernized and unhealthy, but is still quite tasty. We had discussed celebrating St. Patrick’s Day here (yes, I had worn green and changed my name to O’Rubenstein for the day), but both Mindy and Susanna were both feeling a bit under the weather and we had plans to go to Empakai Crater tomorrow, so instead, we all went out to Happy Day for dinner, where we did find others, but certainly not a celebration by any standards. Happy Day has quite reasonably priced, mostly western food that includes delicious Pizzas, Tanzanian style. Not much tomato sauce and toppings that are a bit different, but all in all quite tasty and something that certainly hits the spot when one is craving it. Mindy and Johannes had burgers that were apparently very good. Susanna had stayed home for the evening as she wanted to get some sleep before our trip tomorrow, but she didn’t miss any celebration as there was only one other group of volunteers there and certainly no festivities to speak of. I think we were all a bit tired after the week of seeing patients so we chose to head home instead and relax for the rest of the evening. We weren’t leaving at the crack of dawn so that meant that at least we’d have an extra hour or so of sleep.