We had arrived home last evening after an incredibly dusty day traveling all the way back from the Central Serengeti by way of Katashu’s boma, all with the constant worry that our windshield could collapse or shatter with one wrong bump (and these roads are the bumpiest you could possibly imagine) or another ill-timed rock kicked up by a passing vehicle. Amazingly, the windshield somehow held up and Turtle got us home, though Vitalis would have to make the long drive back to Arusha tonight so that the vehicle could be repaired and returned to us by tomorrow as had daily plans for the coming week including a trip to Mto wa Mbu on Thursday for another mobile clinic. As is usually the situation, Vitalis would hopefully drive it back to us in the morning, but as it turned out, it was not a standard windshield and took several tries to get one fit installed after which it had to be tested to make sure it was watertight. Having expected the vehicle back in the morning, it was not until almost 9 pm that he made it back to us meaning that he would have to spend the night and head back to Arusha the following morning by bus.
Meanwhile, having arrived home last night and arranged to have hot water available in the kuni boiler for us all to take showers, with plans to spend a quiet evening after all of the excitement of the Serengeti, with me hopefully catching up on this blog, we received a phone call regarding a child in the ward who was having seizures. We now have phones in all of the volunteer houses making us that much more available, which can be, of course, a double-edged sword. So once Cara was dressed and more respectable, the two of us began our stroll up the ward to see this young child who turned out to be a bit more complex than we had hoped for.
He was a 9-month-old twin whose mother was with him and he was definitely developmentally delayed as he was not yet sitting or crawling, both of which his twin was actively doing. He had apparently been seen previously at Kilimanjaro Christian Medical Center (KCMC) at 3 months of age for seizures and had been placed at one point on lamotrigine and carbamazepine, though his mother had reported having stopped them a month or so ago as she thought the medications were making him worse. The child had come in earlier that day and had already been given a loading dose of phenobarbital, which, as many of you including the non-neurologists are likely aware, will suppress someone’s respiratory drive and, given the lack of ventilators here, is not a happy situation to be in.
What was readily apparent to both Cara and myself as we walked in the room was that the child looked syndromic, meaning that he may have a genetic syndrome causing dysmorphic features, but could also explain his seizures. We also immediately noticed that he was having recurrent episodes of impaired awareness and abnormal movements of his extremities that were clearly seizures meaning that he was essentially in non-convulsive status epilepticus and very likely had been for some time. More so, this was on top of the phenobarbital load that he had already been given earlier in the day and had also been repeated once with continued seizures. On examination, when he wasn’t seizing, he did seem to track some with his eyes, though he had some asymmetric motor tone giving us the impression overall that we were clearly dealing with a young child who did not have “normal brain.” The significance of this fact was specifically how it related to the reason we were now seeing the patient, that being uncontrolled seizures.
He had already been given some good doses of phenobarbital and was continuing to have seizures despite very generous doses of the medication and anything of this very sedating drug would cause him stop breathing and that would be adding insult to injury and would be a problem neither of us were interested in dealing with at the moment. The fact that we had no intravenous antiseizure medications remaining was clearly going to be an issue in trying to manage this patients continuing seizures, so we began to look at what else we had available and could put down a nasogastric tube once one was placed.
The availability of medications in Tanzania has always been a bit of mixed bag as there are several factors that are involved – first, a medication has to be registered with the Tanzanian Medicines and Medical Devices Authority, or TMDA, which is the equivalent of the FDA in the United States and decides which medications and medical devices can be used in this country and which cannot. Using a medication not registered can be a significant issue for any facility and merely having an unregistered medication on the shelf in your pharmacy is an infraction. Considering the TDA stops by for unannounced visits from time to time simply enforces this standard which is entirely reasonable and if one wishes to have a medication registered, you must go through the normal process of doing so. Secondly, there are issues of availability and supply chain issues that can affect that. Having a steady supply of a medication that patients use on a regular basis is an essential consideration before prescribing a medication and, even more so, for medications such as antiseizure medications where discontinuing the medication can have grave consequences for the patient. And lastly, there is the cost of the medication. Placing patients on a medication they unable to conceivably afford in the future serves absolutely no purpose and can, in fact, cause more harm.
This is why phenobarbital is considered to the first line antiseizure medication for the world – it is inexpensive, easily affordable and readily available. Unfortunately, though, phenobarbital has some very significant downsides to its long term use, first and foremost being those of cognitive impairment and delayed development. That being said, it is still a medication that can used in children at a very early age, but you just have to remember to switch over to another long term medication at some point. I won’t go into all the aspects of how we decide which antiseizure medication to use in which situation as that would probably bore the majority of you, but leave it to say there are a number of interdependent factors that go into this decision once one has elected to start a medication for this purpose.
So, back to your young child in the ward with seizures. Unfortunately, the medication that Cara most wanted for the child, levetiracetam, a very broad spectrum antiseizure medication that can be easily loaded, doesn’t suppress a patient’s mental status or respiratory drive and mixes well with other medications, was unavailable here at FAME due to supply chain issues. Given that, our other choices were to use phenytoin, and older medication that can at least be loaded quickly, and valproate, which can also be loaded quickly, but we were concerned about its safety for this patient due to his developmental delay and the fact that valproate can cause serious problems in patients with metabolic disorders. We chose to give him a phenytoin load, but the other issue with phenytoin, which is usually loaded intravenously, is that it is very lipophilic and would stick to the NG tube, lessening the amount of medication that would get into the patient. Since it’s usually given IV, this is not ordinarily a problem.
After an hour or so in the ward, Cara and I walked home, though she returned immediately to continue working with the child who continued to seize despite receiving the phenytoin on top of the phenobarbital and was now looking just a bit encephalopathic by the morning when we looked in on him again. Amazingly, though also a bit frustrating, someone found a bottle with just 11 tablets of 500 mg levetiracetam, with one tablet being a perfect loading dose for this young child and enough to allow up to continue it for at least a short period. The child received his first loading dose of the levetiracetam and within a short period of time, his seizure frequency lessened dramatically. And, after his second loading dose of levetiracetam several hours later, his seizures stopped altogether and, over the next day or so, his encephalopathy improved and he was slowly back to his baseline with no further seizures.
Even without the ability to provide IV antiseizure medications in this setting, it can make a great difference just having the right oral medications to administer and, in the case of levetiracetam, having it readily available, though, at times a challenge, was life saving for this young child. Our hope will be to have enough of it now to send him home on it which I do think will be possible going forward. It was a real challenge, but putting all of our knowledge and resources together, along with finding that bottle of levetiracetam, truly made a difference.
Considering Cara got very little sleep last night having made several trips to the ward for our seizing baby, it was helpful that things were a bit slower in clinic today as it gave everyone time to recover from our trip home from the Serengeti as well as the late night in the ward. During morning report, we were able to catch up on everything from the weekend and, thankfully, there were no neurology patients that had been admitted over the weekend who required our attention other than our little baby with the seizures. We were without our beloved Turtle since it wasn’t home and, therefore, we were stuck at home in the early afternoon, though no one minded the extra downtime and a chance to catch up. It had been an exciting weekend and we were all able relax and consider all the amazing things we had seen – Oldupai Gorge, Shifting Sands, Cara and Alana’s balloon ride, our wonderful camp, the amazing cheetah hunt, and the Big Five before noon on Saturday.