October 26, 2016 – A day to begin winding down….

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I have been here now for nearly a month and between us, this is our 16th day of neurology clinic and the patients continue to come. We had planned for today to be a day to catch up at the end and complete our data entry for the patients that we’ve seen and a chance to take the “neuro team” all out to dinner for an evening on the town. It’s been an incredible visit so far and both Kelley and Laurita have easily managed to become a part of the family here such that it will be very hard for them to leave. The work here is like that. It’s so easy to get caught up in your own life at home and your own work schedule, but here that doesn’t happen. Everyone is working together for the same goal and the pace is much different. There are none of the pressures that we always seem to be under and which occupy so much of our energy to deal with. Here it is pure and simple. We wake up, we walk to work, we see a large number of patients, most of who have very little in the world, but have done what they could to get here to see us because they are concerned. We practice medicine as it has been practiced for centuries, listening to the patient and examining them, making an assessment and offering a treatment plan. Sometimes we have something to offer and other times we don’t, but we take our time explaining to them what we believe is going on. It is this time honored tradition that has brought each of us to medicine and has brought each of us here to Tanzania. This is what we have been seeking.

Our little patient with infantile spasms who's doing well

Our little patient with infantile spasms who’s doing well

Each day was truly “unadvertised” this week, but yet we have patients seeking our care that have often traveled far and cannot be sent home. And they are all patients in need of our services. Today was Kelley’s day for pediatric neurology and she was very happy to have me sit in on her cases as they were all complicated. First was a young child who had been seen by Dr. Jackie in March and diagnosed with infantile spasms and developmental delay. Infantile spasms are typically associated with a very poor prognosis and we had seen them two weeks ago and the child had been off of their antiepileptic medication for about a month and had had no return of the spasms. We wanted to leave the child off the medication if possible so asked them to return and that we would contact Jackie in the meantime, which we did and she suggested leaving the child off medication unless either the seizures returned or she regressed in functional status. Neither had occurred so we opted to leave her off the medication, but to return if she had more events or had any functional regression. The family was quite happy with those plans and we sent them on their way.

The cutest little patient we've seen yet who had febrile convulsions

The cutest little patient we’ve seen yet who had febrile convulsions

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The next patient she saw was an 18 month old boy who had been having a number of febrile convulsions, perhaps monthly, but with an episode of complex febrile convulsion in July as the event had included focality with the child shaking on one side only. We always worry with that type of seizure as there could be something structural intracranially, but the baby had been seizing for some time and his exam was entirely non-focal. He was very well advanced developmentally and was bright and interactive in every aspect. We told his parents that the seizures were febrile, but there was an increased risk of epilepsy due to the complex nature of the one seizure. Unfortunately, there really is no good data on the subject and the jury is still out. It is still felt, though, that daily treatment with a prophylactic medication may have to greater risks than benefits. We did not prescribe an antiepileptic medication for the child, but did decide to send an email home to Jackie to see what she would do in the situation. I believe we’re not far from starting medication, but we’d love to have her thoughts first and can easily bring the child back in if she feels otherwise. Meanwhile, he had to be one of the cutest babies we had seen while here and he definitely entertained us during the visit. I have a little frog with a light that I had found at CHOP and he loved playing with it, but was not very happy when he found out that I was not giving it to him to keep.

Kelley demonstrateing excellent use of both hands in the patient

Kelley demonstrateing excellent use of both hands in the patient

I asked at the end of the visit if we could take him home with us

I asked at the end of the visit if we could take him home with us

The very next patient for Kelley was another baby with a much different story. She was 14 months old and her mother’s pregnancy with her had been normal and she was normal at birth by report. But then, at 3 weeks of age, she began to have multiple seizures per day and her parents didn’t bring her to a hospital to be seen for at least a month. At that point, she was placed on phenobarbital which she remained on, but continued to have seizures, though perhaps a bit less frequently. She was having them perhaps several times a month, but then began having more seizures again most likely as was now underdosed on the phenobarbital because of her growth. The child was developmentally very abnormal doing very little on her own and was not crawling. Though she was initially sleeping when Kelley went to examine her, it was readily apparent that she was quite abnormal with nystagmus and a right gaze preference, failed to attend whatsoever once awake and couldn’t hold her head up. She was spastic throughout all of her extremities. It was pretty heartbreaking as I don’t think her parents really understood how grave the situation was at the beginning. I will have to admit that these are the children I chose not to see in practice ( I always said that I didn’t see floppy babies!) and so we also emailed Jackie about this child to her input. We of course adjusted her dose of phenobarbital which was the obvious thing to that even we were capable of as big people neurologists. I should mention to you here that on my first trip to FAME in 2010 and when arriving to clinic one morning with a long line of patients, half of them being children, I lamented to Frank that I’m not really a pediatric neurologist, at which point he quickly replied to me, quite seriously, “right now, you’re the closest thing that Tanzania has to a pediatric neurologist.” I learned my lesson then that we have to make do with what we have and do our very best for each and every patient.

Laurita evaluating a headache patient - Kichwa!

Laurita evaluating a headache patient – Kichwa!

Laurita had a very interesting elderly patient whose problem was that she had episodes where she would begin singing and praying, but would still be responsive during the episode. This had been going on for many years and, of course, occurred during the visit when she began chanting and rocking in her chair. Laurita came out to get me so I could observe the episode which was clearly a conversion disorder and not a seizure or, as often they are considered here, demon possession. She was very responsive during the episode and could answer simple questions, but continued for some time with her singing. We later got the history that these episodes had started when she had killed a snake and some blood had gotten on her face during the event. When she went to wipe the blood from her face, some of it got into her mouth and this is what precipitated the behavior. We recommended using an antipsychotic medication to see if it could decrease the episodes, but what she really needed was psychotherapy which just isn’t available here in any shape or form. One might think that she could get some help from her church, but unfortunately it is often the pastors at the churches who propagate the demon possession explanation for them which only worsens the stigma to the patient and family.

Laurita evaluating her patient with episodes of singing and prayer

Laurita evaluating her patient with episodes of singing and prayer

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Sometime after lunch we were called to the ward to evaluate a patient with weakness and numbness in her legs. She was a 65-year-old woman with a 9 month history of progressive weakness and sensory loss and hadn’t been able to walk for over two months. She also had significant weight loss and during her examination was found to have a very large supraclavicular lymph node quite worrisome for a malignancy. We sent off all of her lab work which returned with an extremely high platelet count and an erythrocyte sedimentation rate of greater than 120, both also very worrisome indicators for malignancy. Neurologically, she had brisk reflexes in the legs and poor rectal tone, both suggestive of a spinal cord process. Top on our differential was a primary malignancy with a metastatic lesion to her lower spine and compression of her spinal cord. Unfortunately, none of this bode well for her prognosis and now it was time to make decisions about her care. If we obtained a CT scan, which would cost her family a significant amount, it would not likely change her management as the very best we could hope for would be sending her to Dar es Salaam to the only neurosurgeons in Tanzania to remove a tumor that would not improve her neurologically and then they would have to deal with the primary malignancy. We had no evidence that she had tuberculosis and given the large lymph node which was painless and hard making it more likely to be malignant rather than reactive from an infection. A discussion would have to be had with the patient and her family about her prognosis and whether they had the resources and/or the desire to know what was going on given the most likely scenario that she wouldn’t improve neurologically and would eventually succumb to this process. I will try to post the outcome of that conversation when it occurs. Regardless, it was a very good educational experience for both Laurita and Kelley not only as far as the evaluation of the patient was concerned, but also the discussion over treatment recommendations.

Evaluating our patient in the ward with likely metastatic disease to her cord

Evaluating our patient in the ward with likely metastatic disease to her cord

We finished a bit earlier which was good as we all had plans to go out for dinner with the entire neuro team and were heading to Carnivore for grilled chicken, chipsees (French fries), grilled plantains and beer. We had Dr. Badyano, Sokoine, Angel and Alex along with the three of us. The chicken here is the most tasty around we always look forward to this visit. Best of all, they play wonderful African dance music and have a small dance floor that we all monopolized until the wee hours after dinner (here that means 11pm). We all returned safely home after dropping off Angel and Badyano at their homes and went to bed for some sleep looking forward to our final clinical day here at FAME on the morrow. Each of us, though, knew that we would be missing FAME in very short order and would be leaving with heavy hearts.

Kelley during a lighter moment - no, she isn't demonstrating right eye ptosis

Kelley during a lighter moment – no, she isn’t demonstrating right eye ptosis

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