Thursday, September 22 – A visit to the Majengo Children’s Home in Mto wa Mbu and Cara’s last day…

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Our original plan had been to finish our Cara’s time at FAME today as she would be leaving tomorrow on safari with her boyfriend, but earlier in the trip, we had been approached by another children’s home in Mto wa Mbu to provide a neurology clinic for them. We had been asked in the past to work there, which is in another district, but for various reasons, it hadn’t worked out. The Majengo Children’s Home (https://majengo.org), though, had already done all of the leg work on speaking with the District Health Officer there as they had also had a cardiology clinic earlier this year with Dr. Reed, a cardiologist and long-time volunteer at FAME, who screened children throughout the village for rheumatic heart disease (much more common here than in the US). He had seen hundreds of local children for this purpose and it was initially thought that we could do something similar, but I explained that we would be happy to see children that had already been screened and there were concerns for neurologic disease or a previous diagnosis which is really what we do here rather than the initial screening.

Taking our tour of Majengo Children’s Home

Though the opportunity to provide this care was appreciated, we could provide these services just about anywhere in Tanzania, to be honest, but that is not what FAME’s mission really is which is to improve the health of patients in the Karatu District Community. Nor would it be sustainable without the funding necessary to provide the continued care for these patients and that would need to come from elsewhere as it would not be a project FAME could take on with its current obligations here in Karatu. Over the years, our mobile clinics have all been within the district and with the budgeting that we knew would be necessary to provide these services on a continuous basis. Well-known projects such as surgical programs, whether it be for cleft lips and palates, or for cataracts are those that can “fix” the problem and, if for some reason, the funding ended, those patients who had already been helped would not necessarily require continued care. Making diagnosis such as epilepsy, for example, requires life-long treatment very often and without the sustainability piece for us (neurology), it doesn’t really make sense to start if you can continue it.

So, after making sure that everyone had the same understanding and expectations, it was agreed that we would travel to Mto wa Mbu for the day and evaluate those children at the Majengo Children’s Home who needed our services and we would make recommendations for treatment. It was also convenient that Majengo had their own nurse, similar in a way to Rift Valley Children’s Village with their clinical officer, Africanus, as our recommendations and prescriptions for medications could be carried out in between our visits by the nurse and, if need be, they could also speak with Dr. Anne here at FAME if there were any concerns. We traveled down to Mto wa Mbu on the tarmac until we need to turn on Majengo Road and drive another several kilometers on a very dusty and bumpy road eventually leading us to their site.

Our clinic set up at Majengo

Joseph, the director at Majengo, took us on a tour of the facility where the children live and go to school with a number of other at risk children from the community. Majengo takes in children from families who can no longer care for them, but unlike RVCV, these children continue to maintain a strong relationship with their family, or at least as much as is practical, that is facilitated by Majengo. Many of the children who we saw later had come from homes where severe malnutrition and alcoholism had been the norm such that the only chance the child had for success, or sometimes remaining alive, was for Majengo to take them in. If possible, the children go back to their families for the holidays and, eventually, at age 17, they are returned to their families or their community which is what is required by law. The children there are incredibly well cared for and the information we received from the nurse and psychologist at the school about each of the children we saw clearly indicated their deep devotion to every child’s well-being both emotionally and physically.

There was also a group of children that had been brought to Majengo this morning for us to see who had come from another nearby home, The Tumaini Home (https://tumaini-home.no/about-us), who we have worked with for a number of years. Tumaini Home takes in many children with neurologic disorders and is a Norwegian based non-profit run by Ståle Ande, an incredibly lovely man who, for many years, has brought children to see us at FAME for our assessments. Most of these were young boys with muscular dystrophies, but there were also children with other disorders who would come. He would always drive up in his Land Rover with wheelchairs strapped to the roof and as many children (some of them actually being young adults) stuffed in the inside of the vehicle. Despite their often incredibly limiting deficits and the likelihood that they would not be living much longer as many of them had already lost siblings to this horrible genetic disorder, they were always all smiles and I don’t think that I ever really heard a complaint from one of them to be honest.

The residents ready for work

Unfortunately, Ståle had to return to Norway at the beginning of the pandemic and I don’t believe that he has returned since. Though I clearly missed seeing him again this time, it was so reassuring to see these children after not having done so over the last two years and I was glad that we were here to do so even though there was very little that we had to offer them other than compassion as most of them were in the later stages of their disease and were non-ambulatory. As time goes on, I know that I will not be seeing these exact children any longer, but hopefully we will have the opportunity to see others like them along the way so that we can offer at least so assistance in their early management.

The setting at Majengo was just idea for us to work in as they had four stations with desks and chairs already set up for us to begin seeing the patients. The one limiting factor that we did have was that we had a limited number of informants both from the Tumaini Home and Majengo which meant that we couldn’t really proceed at our normal rapid pace given that constraint as the children were too young to supple each of their histories and the boys from Tumaini were also unable to do so. Be that as it may, we were able to get through all the children they had asked us to see from both homes a bit before 4 pm. Before we started, though, we were served a breakfast of juice, hard boiled eggs and butter sandwiches. The residents were most interested in getting started so it didn’t take long for them to get the show on the road and begin seeing patients.

Interestingly, we really didn’t have anyone with epilepsy to see here which was surprising as that is our second most common diagnosis here at FAME. We saw a number of children with very classic migraine headaches, which, for those of you who are not aware, is really a childhood diagnosis. Seeing a child with an intermittent, pounding, throbbing headache associated with photophobia, nausea and occasional vomiting and a normal examination is actually very reassuring as it is so common, typically presents in a very common manner and is also very responsive to treatment whether it be symptomatic for each headache with non-steroidal anti-inflammatory medications or a preventive with medications such as propranolol or amitriptyline. Patients coming in at age 40 or 50 with no history of headaches and new onset of even rather classic sounding migraines, make us feel a bit more unsettled and those patients will usually end up with an MRI scan of the brain back home.

The other group of children who we saw and were asked to evaluate, were those with various behavioral issues and difficulty in school. A number of them had significant anxiety and had come from very difficult home situations. Counseling, the most effective treatment for this is difficult obtaining here for obvious reasons and, therefore, we had to rely more on medications unfortunately. Placing a child on an SSRI medication is often necessary if the anxiety is such that it is interfering with their happiness and school performance. Attention Deficit Hyperactivity Disorder, or ADHD, is an entirely different matter as it also responds to medications, but we have no stimulant medications here in Tanzania for obvious reasons. There is a very basic medication, though, that we will try early on to see if they have benefit to it and that medication is clonidine. It is often used for milder cases in the US, but to be honest, most patients will eventually end up on a stimulant just because of the overwhelming effectiveness.

Some of the children who we were evaluating for ADHD and were of the inattentive type, rather than the hyperactive type, also were described as having staring spells which always invokes the concern about whether they are having absence seizures. Having no EEG here at FAME or a practical way of obtaining one, it makes the history that much more important and that is often much easier said than done. The other manner we have here is during the examination, we can try hyperventilating the child to see if we can induce a seizure which, if they do have a primary generalized epilepsy and absence seizures, will cause the child to have a brief period of staring and often blinking representing a seizure. We have recorded a number of these here in children with primary generalized epilepsy and getting them on medications is always quite rewarding as they are very, very responsive to treatment. None of our patients today had convincing episodes, so none of them were placed on anti-seizure medication.

After we had seen all of the patients, we then grouped around a big conference table and each of the residents presented one of their patients at a time with the team from Majengo as far as what our concerns were and what the recommended plan would be. It was like a multidisciplinary meeting at a school in which each party would give some input into the care of a child to come up with a comprehensive plan. I felt that the staff at Majengo were incredibly well prepared and voiced what concerns they had about each child so that we could then discuss our assessment and then our recommendations. Though this isn’t something that the adult residents were particularly familiar with, I knew that Cara would totally comfortable with this style of meeting and she was. We didn’t have all the medications necessary with us, but would send the rest down from FAME which would not be an issue. We ended our visit at Majengo with very positive feelings about the impact that we had made during this visit and about going forward with this clinic on a regular basis in the future as long as everything continued to work out. It was very much a Mission Accomplished moment, though I say that not at all in a GW Bush manner, but rather in a sense of true accomplishment on so many levels.

Having left Majengo a bit before 4 pm, it allowed me to keep my promise to Anne who had asked to stop at the Maasai market for some nyama choma (barbecue) and other supplies before heading back up to Karatu. Every town or village will have their Maasai Market either once or twice a month and they are very typically big affairs where you can purchase anything from food supplies to clothing to livestock and people travel from far and wide to stock up. The markets in Karatu are on the 7th and the 25th of the month and I can honestly say that having visited it once was more than enough for me for it is mass hysteria as far as I’m concerned. If you have any issues with social anxiety or claustrophobia, this is not the place to come. That being said, I have had many residents who have enjoyed going to the market just to walk around and I’ve told them that I’m happy to drop them off and pick them up, but don’t expect me to join them. Just driving up to the edge of the market and seeing the mass of humanity spread out over the many acres is enough to give me the heebie-jeebies in very short order.

Abbie and Moira attempting to hyperventilate a young patient

So, it is with this preface that I tell you this story. After driving the few minutes in the opposite direction from Karatu to find the market, which wasn’t difficult as the closer you get the more bijajis and boda bodas begin to swarm around on the road in every direction transporting people to and from the hive of activity that is the market. I found an initial parking place in some shade as Anne, Angel, Nuru, Abbie and Cara jumped out of the vehicle to do some shopping. The last thing I heard from them was that they would be a few minutes to pick up some things. It took all of about 10 seconds for several of the local youth to realize we were there and begin to ask for money. As the majority of vehicles that look like Turtle traveling through this area are filled with tourists on safari, this is the typical behavior and was not unexpected, though I was quite tired and they were overly persistent. I chose to move the car to what I thought might be a quieter spot, though was sadly disappointed.

Alana and Hussein evaluating a patients gait

For the next 45 minutes, I sat in the driver’s seat of our vehicle trying not to be rude to an older Maasai man who just wouldn’t take no for an answer and proceeded to continually try to ask me for things that I tried to politely decline and not be offensive. It was really a very laughable situation and I know that Alana and Alex were getting a kick out of it even if I wasn’t. At some point, Cara texted me to tell me that they had been separate in the market and to let her know if the others returned. Eventually, a few of them returned and then Angel decided to buy some jewelry out of the back window of the car which then made it clear to the surrounding merchants that we were actively purchasing things which only increased the activity around our vehicle.

The others eventually returned and the Maasai man who had been harassing me for the entire time was now actually leaning his head in the car to talk to others. I had enough of the situation and started the vehicle engine figuring that this would be a fairly reasonable indication that we were planning to leave and that if wasn’t interested in losing his head, he should probably take it out. Apparently, my message had been too subtle and it took more than a gentle persuasion by the Tanzanians in the car to get him to remove his head, still on his shoulders thankfully, from the car. Finally, fully unencumbered, I started the car rolling in the direction of home, never happier than this to begin the short drive back up escarpment towards Karatu and never wishing to see another Maasai Market again, at least for the near future. For the next several days of their visit, the mere mention of revisiting the Maasai Market was enough to make the point that whatever was being discussed was not an option.

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