Thursday, September 24 – A day of mixed emotions….

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Participating in a Zoom neurology lecture hosted by Mike Baer in Philadelphia

As is often the case in medicine, there can be massive swings in your emotions on any given day. Today was one of those days where we were able to make such a difference with some patients, yet with others, we had little to offer other than empathy and the hope that we had at least allayed some of their fears for the unknown. It is perhaps no different than in the US, that when you give a diagnosis of a disorder that has no treatment or, at best, is symptomatic and not curative, that patients may seek care elsewhere looking for more answers. In a country with a far disproportionate number of specialists, it is easy enough to find another physician to provide this second opinion, or perhaps even many, but here in Tanzania, that is impossible. There are only a handful of neurologists in the country and those that are here are all generalists, like me, though they do not have the ability to send their patients to subspecialists and experts in a specific field as I do back home. Patients that we see here have often been to several health centers or dispensaries before us with the hope that one of them may have some answers for them. They are often misdiagnosed and given medications or therapies that will be ineffective in helping them whatsoever and, at times, may actually be harmful. We have seen this all too often here and it is very sad when it occurs.

Participating in a Zoom neurology lecture hosted by Mike Baer in Philadelphia

Participating in a Zoom neurology lecture hosted by Mike Baer in Philadelphia

So, on this backdrop, our first patient of the day was a young girl from the Ngorongoro Conservation Area who came to us with a history of recent onset seizures that had begun only days before coming to see us. The most disconcerting thing, though, was that her seizures all consisted of a very focal onset with right arm shaking. When this situation occurs, the new onset and significant focality, we become immediately concerned about some sort of mass lesion serving as a seizure focus, despite the fact that her examination was completely normal. At home, she would have been scheduled for a special seizure protocol MRI even before she walked out the door along with an EEG, neither of which are readily, if at all, available here. The family was Maasai being from the NCA and her mother did not speak Kiswahili, though the young girl did, so we had a three way translation ongoing during much of her visit.

A Maasai mother and daughter

We discussed the need for a contrasted CT scan, but unfortunately, they had no way of covering the cost of the study which is often the situation here. Though the cost of such a procedure is far less than it would be in the US (200,000 TSh or approximately $90 USD), it is often still far out of the reach of individuals here and it is common practice for a patient or family to go back to their village to raise the necessary funds. That is more successful than you might imagine as it is culturally unacceptable here to have money in your pocket with a member of your clan in need. Doing so would be an act that you would immediately be shunned for by the village. As I have often explained before, it is also not possible for FAME to offer free medical services for a number of reasons. A not insignificant portion of FAME’s operating expenses comes from patient fees, but even more importantly, in doing so FAME would immediately alienate all the other caregivers in Karatu who actually make a living practicing medicine and in one fell swoop, we would suddenly be caring for nearly 60 million Tanzanians who would flock here to receive their free medical care. That would become an untenable situation almost immediately.

A Maasai mother and daughter

Thankfully, this family was either related to Kitashu or from a nearby boma and he immediately authorized the CT scan to be done while we would work out payment at a later date. I will also add that it is very unusual in situations involving children, that we are not able to find some way to cover the cost of their medical care in some fashion. This is the normal role of Kitashu and Angel as they will sit down with a family and figure something out when it comes to children. We were all relieved to see that her CT scan with contrast was entirely and there was no mass lesion or other abnormality that could be seen as the cause for her seizures. Had we found anything that required treatment, that would have been an entirely different matter in regard to how the cost of future medical care would be handled. There is a government pediatric cancer hospital in Dar es Salaam that does treat children free of charge, but it’s a matter of the family getting to Dar and then their housing while they’re there that must be worked out. It’s not an easy task to figure out healthcare in a country where access is so very limited and fee for service in advance is the rule.

I placed the young girl on carbamazepine given the fact that the seizures were so focal, but noted that we would consider tapering her in a few years to make sure that she still needs the medication and at that time would consider transitioning her to lamotrigine which is safer in pregnancy, but also quite a bit more expensive. It always seems to be a juggling act here in some form or fashion.

Mother and child

My next patient happened to be a 13-month-old little boy who was having significant developmental problems, but more importantly, he was having brief episodes of posturing his arms that was pretty classic for flexor spams during which his eyes would widen in a look of startle. His mother said that these had been going on since he was about 4 months of age and, during the visit, I also witnessed the child to have a number of brief episodes in which he would suddenly extend both of his arms in what I recognized as being fairly classic for infantile spasms. He was completely unable to hold his head upright and his mother also noted that he seemed to unable to see. When I examined him, his head circumference was normal and he was hypotonic, but most importantly, was indeed unable to hold his head up whatsoever. The baby may have responded to the flashlight, but it was difficult to tell and he clearly did not track faces or the flashlight. He did attempt to grasp objects in any manner.

My concern for this baby was that he most likely has infantile spasms which are part of a very significantly disabling epileptic disorder seen in infancy and called West syndrome. In addition to the infantile spasms, children are typically developmentally delayed  and have a typical EEG pattern, though we don’t have EEG readily available here at FAME and I didn’t feel that it would likely change my impression had we sent the child to KCMC for this procedure. There are a number of causes for the disorder, but we have little in the way of capability to test for them here and the child appeared physically normal other than his vision which was clearly impaired. The first line treatment is to use steroids, though after discussing the case with Dr. Dan, it’s very likely that they won’t help given the amount of time that he has been seizing. Still, I placed him on high dose prednisolone and asked them to return in 10 days prior to my departure. There is an antiepileptic agent available in the US that’s helpful for this disorder, but it is far from available here, so we try using a second line agent such as topiramate. The prognosis for this child given his developmental delays, his visual impairment and the seizures is very poor and these children will often develop another severe epilepsy syndrome as they age called Lennox-Gastaut syndrome. Overall, not a generally encouraging outlook for this child, but we’ll see what he looks like when he returns.

Abdulhamid examining one of our patients

And then, adding insult to injury, as if we weren’t already depressed enough, in walks a gentleman sent over to us from Dr. Lisso in the OPD with the complaint of weakness. Abdulhamid was taking his history and after a bit of sorting things out, it quickly became apparent to me that this man was having progressive, painless weakness of his left arm and despite some other complaints that he had, it really boiled down this symptom being the most profound. I had immediate concerns for what we were dealing with the moment this piece of information became clear and mentioned this to the others as they began their examination. Unfortunately, his examination only confirmed my earlier suspicions and he indeed had the constellation of findings that includes both upper and lower motor neuron involvement that define this dreaded disorder. He also had diffuse muscle fasciculations in multiple limbs that pretty much clinched the diagnosis of amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

At home, I would have referred him for an EMG for further confirmation of the diagnosis and could have certainly sent him to Dar es Salaam to have had this study performed, but given his findings on examination and his history, it would really have been superfluous and very costly for him with no chance that it would have changed his management. Though a medication does exist in the US to “treat” this disorder, it merely extends a patient’s life by months at best and is extremely costly so that it is most likely not available in any country with socialized medicine, let alone a here. This disorder is hard enough to explain to patients in the US, where most everyone has heard of Lou Gehrig’s disease, and it was particularly difficult to explain to our patient, though it was imperative to do so and prevent him from going to other health centers for other opinions where he may be misdiagnosed and mistreated. Certainly, we can never be totally sure that won’t happen, but we do our best to prevent it if we can. As I have mentioned before, it is not uncommon for patients here to seek opinions from multiple health centers when they don’t fully understand what is going on or may not be comfortable with what they’ve been told. It is as important for us to make patients feel that they have been fully evaluated as it is to provide them a treatment, and more so if no treatment is available.

Revo speaking with one of our patients

Fully deserving a break from the cases we had seen, a long term patient of mine came in that I have been treating successfully for bipolar disorder that I had diagnosed a number of years ago and had placed on lamotrigine. He continues to do well and just came in for refills which he continues to do religiously every six months. I was so grateful to see him today of all days. At the very end of the day, a trauma case was brought into the ED and it was so impressive to see the doctors and nurses in action where only several years ago there had been no ED. The patient had been involved in a traffic accident and had suffered a head injury, so I did stick around to look at the CT scan for them, which was thankfully normal. Having no neurosurgeon here, we would have to send any patient with a subdural hematoma to Arusha to be treated. We’re hoping at some point to train the doctors here, most of who also do surgery, to provide burr holes for these patients when needed.

I took the evening off in regard to my bike riding and was looking forward to signing into our neurology faculty meeting back at Penn as it was going to be a town hall format dealing with all of the current ongoing stresses trying to manage work and home life in the age of COVID. It was a great meeting and I am so happy to be part of a department that is continually discussing this issue as well as the racial injustice we are dealing with at home. Though I am for the moment somewhat insulated here in Tanzania, these are very distressing matters that we will need to deal with as a society and as a department and keeping this conversation in the forefront is the best way for us to overcome these serious issues together.

 

 

 

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