January 1, 2016 – A New Year…

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A New Year…

Another year has come and gone, and with it, so many accomplishments by many dedicated volunteers who have accompanied me on this journey. And as we ring in the new year, there are great developments underway that will ensure the long-term effectiveness of our program to provide ongoing neurology education to the caregivers of FAME as well as assist in the neurological care of the patients who present with these needs.

Christyn and Payal

Christyn and Payal

Last March, Payal and Christyn were the powerhouse clinicians who between them evaluated nearly 250 neurology patients at FAME, as well as on our mobile clinics to the Mbulumbulu region of the district. Payal was the second child neurologist to accompany me and her value was quickly realized with the number of pediatric cases we saw, many of whom had neuromuscular or genetic disorders that are often so difficult to sort out. Christyn managed to plow through the adult cases we saw in an equally efficient and effective manner to make diagnoses and develop treatment plans. Without the two of them, both premiere educators, it would have been impossible for me to have provided so many patients the necessary neurological care while continuing to provide valuable education to the clinicians at FAME.

Lindsay, Cara and Danielle after success with the EEG machine

Lindsay, Cara and Danielle after success with the EEG machine

In October, Danielle Becker returned for her third visit to FAME, but on this occasion engineered bringing an EEG fellow (Lindsay Ferraro), an EEG tech (Cara Linenbroker) and an EEG machine donated from the University of Pennsylvania. This was undoubtedly the largest contingent of epilepsy providers in Tanzania at any one time and, coupled with their ability to perform EEG studies on these patients, provided an immediate impact on their care. With this information, they were able to place patients on the appropriate anti-seizure medications, whereas previously it had all been trial and error and all too often the latter. Through their work they were also able to train several nurses to perform EEGs after our departure and to have the studies sent by Internet to be read at Penn with the results, then relayed to the clinician at FAME along with recommendations for the appropriate treatment plan. Epilepsy is a devastating and debilitating illness without the proper treatment and for the first time ever, epilepsy patients in the Karatu district and surrounding areas are now receiving the most appropriate treatment. Support for this project came from the Epilepsy Division at Penn, The University of Pennsylvania, and private donations that enabled us to fund much of Cara’s travel costs, along with the EEG machine.

Thu and Ali with our patient, Roza

Thu and Ali with our patient, Roza

Meanwhile, our neurology residents, Ali and Thu, still managed to see more than 175 neurology patients despite an ongoing national election that curtailed our ability to go out on mobile clinics, and kept the overall number of patients low at FAME due to security concerns. Ali and Thu worked relentlessly on both the inpatient and outpatient side to continue providing neurology education to clinicians at FAME through patient care as well as lectures that were provided to the staff.

Fima - a closet pediatrician?

Fima Macheret

This was also the year that, for the first time ever, a non-neurologist from Penn accompanied us and found that his usefulness was beyond his expectations despite having previously visited Tanzania as a resident at a different institution. Fima Macheret, Ali’s newlywed husband and hospitalist at Penn Presbyterian Medical Center, found that his services were in constant demand at FAME with complex and interesting medical cases providing him with ongoing opportunities to provide clinical and didactic education to the clinicians and nurses at FAME on a daily basis. It is our hope that he will be the first of many non-neurologist specialists to accompany us to FAME or to develop their own Penn program there.

2015 was an incredible year of both productivity and growth for our Penn Neurology Global Health Program in Tanzania and it is on this success that we will build for 2016.

I am planning trips in March and October and will have two residents with me for each trip to again see patients, but more importantly provide education to the clinicians there on how to evaluate and treat neurological patients. We will again have our mobile clinics now that the concern over the national elections has passed and will work on growing our outreach in the community to allow maximum access to all those in the Karatu district.

Along with additional funding from a generous donor, we will build upon the epilepsy program already developed there with plans for Danielle Becker to return in the fall along with another epilepsy fellow. They will reinforce the previous work done with the EEG machine and epilepsy program and continue to bring state of the art epilepsy treatment to this very remote region of Northern Tanzania.

Volunteer houses

Volunteer houses

And perhaps the biggest news of all that will help ensure our continued work in the coming years, along with strengthening the partnership between Penn and FAME, is that we will begin construction of a volunteer house to be primarily utilized by volunteers from Penn. The construction of this house, which has been a dream of mine for some time, was made possible through the generosity of Stephen and Liz Raynes. The Raynes House will accommodate up to eight volunteers and will be the largest of the volunteer houses currently on FAME’s campus. Stephen and Liz have followed our progress with the Penn Neurology Global Health Program at FAME over the past six years, and when it became clear that additional housing was needed for our continued success, they were eager to help and, in so doing, have become a huge part of the growing Penn/FAME family that is changing lives in Northern Tanzania. We currently plan to break ground this March with completion planned for October, though anyone who has worked in Africa is well aware that things don’t always go as anticipated. The Raynes House, though, is now a reality, and Stephen and Liz have earned a huge debt of gratitude from everyone involved with our program.

On a final note, 2016 will be the year that we will host our second FAME fundraiser on Sunday, June 5, and which will be held in the Perelman Center at the University of Pennsylvania in the late afternoon/evening. Please mark your calendars as this will be an event not to miss. You will be able to meet with Frank and Susan who have become such an integral part of my life, as well as all the others who have accompanied me to FAME and discovered what successful global health can be. More details on the fundraiser will be available over the coming months.

And most of all, I appreciate all of the support from readers of my blog and wish everyone a happy and healthy New Year.

November 29, 2015 – Philadelphia Inquirer article

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Following our return from our most recent adventure in Tanzania, Penn Medicine communications department put me in touch with a writer from the Philadelphia Inquirer who found our work there very interesting. Charlotte Sutton, who writes a regular column on medical mysteries asked if I had any interesting patient stories and I sent her something I had written a year or so ago about Roza, our young girl with Syndenham’s chorea. She then asked for additional photos followed by questions about what each photo was depicting. Without a clue of what to expect, Charlotte and her designer, Cynthia Greer, did an amazing job with what I had submitted to them. Pretty crazy to have gotten my own byline in the Inquirer. In addition to Charlotte and Cynthia, I also have Lee-Ann Donegan from Penn Medicine Communications to thank for this wonderful commentary on our work. And to my Penn Neurology residents and fellows who have accompanied me on these journeys, Danielle Becker (who just completed her third trip to FAME), the Penn Neurology department and all those who have supported me in this endeavor I owe a huge debt of gratitude for making this all possible….

Inquirer article

 

 

 

October 30, 2015 – Closing Notes

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Closing notes…

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My Home Away From Home

Awakening to the incredible landscape of East Africa with its unique smells and sounds has to be one of the most pleasant experiences and is a highlight of our time here. With the darkness of night coming on just after six and our typical bedtime of 9 to 10 pm, we are up at sunrise or often earlier, some to exercise, some to walk and others to just take it all in. With the rising of the sun, flocks of small birds travel overhead for their daily commute up and down the valley and we are constantly reminded of the rich and diverse wildlife that the region has to offer.

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Weaver Outside the Lab Building

Breakfast on the veranda as the sun’s rays continue to strengthen and it is soon time to take the short walk to the clinic for morning report or an educational meeting or perhaps to log in to the internet and see what’s happening in the world. Life here is at a different pace and despite the growing lines at registration with a crowd by 9 am, it will all get done one way or another and in it’s time. Of course, there are always occasional emergencies that will always take precedence and the staff response to them is immediate, but the pace will always settle back to that which we come to expect day in and day out regardless of the work. It is a very unique experience here and there is always a tremendous sense of fulfillment and reward in what we are doing, far beyond that which I’ve experienced in any other setting during my career. It is what draws us to return.

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The Vegetable Market in Karatu

Driving through Karatu with its rich and colorful, as well as very dusty orange clay, the town is abuzz with activity. Safari vehicles picking up supplies and their clients en route or returning from Ngorongoro Crater or The Serengeti, local townspeople going about their daily business on the street, and others just walking from here to there as they do every day. These are cultures born in tradition, each with their different language, many here for millennia and others more recently, who form the tapestry of what is Tanzania and what we have come to know here in our travels.

Driving down the Great Rift and into it’s massive valley with Lake Manyara, through the village of Mto wa Mbu (Mosquito River) and on to our turn at Makyiuni we take in the varied and open landscape until we see the rising form of Mt. Meru looming ahead signaling our arrival to Arusha. These are the sights that I’ve come to know so well and have cherished the fact I am able to share these with my colleagues who accompany me on each trip.

Walking through the Amsterdam airport between gates during our return and discussing everyone’s thoughts about their experience at FAME I am reminded of the tremendous opportunity it has been not only for those who have accompanied me, but also for me. It was so amazingly rewarding for the several years that I traveled there on my own, but those rewards have grown exponentially now that I have been able to expose others and will continue to do so into the future. I am forever grateful for the continued support that I’ve received from Penn, from FAME and from generous donors who continue to make this possible. We have not only touched the lives of those Tanzanians who we’ve treated and taught, but also of those who have traveled across the globe with me to have given their time and often money and have been changed forever and certainly for the better. It is not often that we can say with such certainty that we’ve made a difference in this world.

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A Typical Day at the Clinic

October 29, 2015 – Our Last Clinic Day of the Season…

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Our Last Clinic Day of the Season…

One of the most difficult things we always have to do deal with at FAME is whether patients and their families have the resources to pay for care that might be necessary if they must be referred to another facility within Tanzania. At the present time, there are no x-ray facilities nor CT scanner at FAME and much of what we do requires the latter and the study is very expensive to obtain. MRI scans within the country are only available in Dar es Salaam, a ten hour bus ride or $1500 medical flight if that is necessary. They are also available in Nairobi and many patients will travel there for their healthcare if they can afford it. So when we refer patients to Arusha for a CT scan or to Kilimanjaro Christian Medical Center in Moshi for care, we must have a conversation with the family regarding their ability to pay for these services and if it beyond their reach then they must decide what to do. Unfortunately, FAME cannot possibly cover the cost of a patient’s care elsewhere within the country. Certainly, we have had special cases where we do everything possible to help a patient and their family, but trying to provide for everyone would quickly drain FAMEs operating funds and it would cease to exist. This dilemma occurs on a daily basis and I am often running to Frank or Susan to discuss a case with them in this regard and it is nearly as often that this discussion will be a reality check for me and much needed as this is not the typical conversation back home in the U.S.

Our last full day in the clinic began with another wonderful lecture by Thu, this time on headache. She utilized case presentations with participation by the doctors to demonstrate the various headache syndromes we see and when one should be concerned about the complaints that may suggest another cause of the headache requiring further evaluation. Headache constitutes a significant group of the patients we see at FAME and as soon as we hear them say “Kichwa” we immediately know that we will be starting our specific list of questions to determine what type of headache they have, what investigations are necessary, if any, and how we will proceed to treat it.

Our first patient of the day, though, was an entirely different story. He was a healthy 30-year-old Maasai who had given a history that he couldn’t walk or urinate for several weeks. We wheeled him into our office to begin our evaluation and were given the history that he had presented to a local hospital in his area (very far from FAME) with the complaint of inability to urinate and leg weakness and that they had merely placed a catheter in him and sent him home. Our examination was quite clear that he had a problem in the thoracic cord and most likely something was compressing his spinal cord at approximately the T10 level. He had no movement in his right leg and little movement in his left leg and his foley catheter that had been placed two weeks prior was still present. This was obviously not a good situation and the first thing he needed was a CT scan of his back at the very least, though an MRI would have been wonderful. The top of our list for diagnosis was Pott’s disease, or tuberculosis of the spine, and though his labs didn’t point to that, we still had great concern for it. We sat the patient and two family members down and recommended that he go to KCMC to be further evaluated and treated. They agreed, but said that they would have to spend the night in Arusha so they could receive the necessary funds from other family before traveling there. Though it’s unlikely he will do well, it wasn’t possible for us to tell a 30-year-old not to make an attempt to find a firm diagnosis and, however slim, treatment.

Another case for us during the day was a older Iraqw Bibi who came in with her daughter as she had been very withdrawn and was not talking much. After a good deal of history taking, during which her daughter, who had been doing most of the talking and had to finally sit outside for us to hear from the patient, it was determined that she had a very difficult home situation in which she was taking of and providing for her five grandchildren. Her daughter’s husband had left him and she was now responsible for the entire family. There are no therapists for us to refer her to or psychiatrists that are available and so after a long discussion with her to make sure she wasn’t suicidal, we placed her on fluoxetine, or Prozac, and asked her to return in one month. We also asked her talk with other family members who are close and may be able to provide some comfort and help for her. This is often the case, that patient’s lives are very difficult here, and they are attempting to provide for multiple family members and, just as often, multiple generations.

Thu, Roza and Ali in October 2015

Thu, Roza and Ali in October 2015

Shortly after our arrival to FAME, I had asked about Roza Andrea, who is the young woman we had diagnosed with a somewhat rare condition, Sydenham’s chorea and endocarditis nearly three years ago. I have seen her every six months since then and, due to her condition, she must remain on antibiotics for many years to prevent further damage to her heart that could potentially require surgery, or quite possibly, worse. I’ve shared her story before, but it is one that demonstrates the level of care at FAME along with simple internet ingenuity using cell phone videos. The history was unclear when Roza was brought to FAME after two weeks of abnormal movements, becoming mute and non-communicative. Frank sent a simple video to Danielle Becker and myself and we both immediately replied to him with the diagnosis based on those images, directing them to immediately look at her heart and making the diagnosis before any further damage could occur. A subsequent echocardiogram confirmed her diagnosis and that she had received treatment just in time to prevent her from requiring surgery then and in the future. It took over nine months of on and off treatment with steroids, but the movements eventually subsided and she was able to go back to school.

The problem now was that Roza hadn’t been coming back for the monthly injections of penicillin that she required to prevent a relapse of her condition and hadn’t been seen since last March. Dr. Gabriel had made multiple calls trying to reach the family, but to no avail. I asked him to make some last attempts before we left and, finally, at 4:30pm on our last day in clinic, Roza came in much to my relief and by herself. She told us that the family had moved down the rift to Mto wa Mbu and that the reason she hadn’t returned was due to expense of the treatments. She is now sixteen and in secondary school and doing well and we reinforced the need for her to be on some prophylactic antibiotic to prevent a serious heart problem. During our last visit we had contemplated switching her to daily oral antibiotics rather than the monthly injections, which we had originally started to guarantee compliance, but had not implemented the oral therapy yet. We gave her a new antibiotic script for daily oral medication and I made sure knew that I didn’t want her off medication again and that she should come to us if there were ever any issue again in the future. She is such a special patient for me as she demonstrates the true power we have in collaboration with FAME both during our visits as well as when we are home in the States and only an email away.

On Thursday evening we learned that the official results of the election had been released and that the incumbent party, or CCM, had claimed victory. We didn’t hear of any specific violence in Arusha, and we were all keeping our fingers crossed for our journey the following day to Arusha, a stronghold for the opposition, and eventually to Kilimanjaro International Airport to begin our long safari home. We all gathered in one volunteer house (it was dark and there were too many mosquitos on the veranda) for our last dinner together, some camaraderie, and an episode of Curb Your Enthusiasm to round out the night. I has been a wonderful visit to FAME, accomplishing everything we had planned to do and then some. For me, it was my 11th visit to FAME and though it has become second nature, I never cease to be amazed at how they have grown in the six months since my last visit. For the others who accompanied me on this trip, the largest group to date, I believe it has been rewarding and amazing for them to see what can be done in such a small, rural community as Karatu, where FAME has truly become a mecca of excellent health care in Northern Tanzania through the cooperation of Western volunteers and the Tanzanians. We will continue to provide the neurology services that have now become a standard of care at FAME and for years to come. To continue improving the healthcare of such a lovely people, where we have always been welcomed as family, has become our mission.

October 28, 2015 – Election Results Loom…

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The elections and the potential for protests and possible violence continue to keep the patient volume low here at FAME. Patient volume, at least for us, has been rather low and perhaps only half of a typical day over the past several years. We had seen a steady growth in the neurology volume with each successive visit, but the election has definitely put a damper on that trend. I am certain that things will pick back up for our next visit in March, though, and we will be right back on track. The new from Zanzibar was not encouraging today as they had received more ballots than registered voters and the government has announced that they are nullifiying the results and will have a special election. News is trickling in at this point and the opposition has called for a nullification of the entire election at this point. The official release of the results was to be on Friday, October 30, but that is now in question. We are hopeful that things will remain calm for our departure Friday night.

Regardless of the low volume at the clinic, we still have neurology patients come for us which was a good sign.

Our first patient of the day was a 90-year-old bibi (“grandmother” in Kiswahili) who had been brought in by her family over night. She appeared to have had a stroke in the past with very significant left sided weakness on her examination, and was having intermittent and frequent rhythmic movements of her left side. As we watched, her left leg began to twitch lasting about 30 seconds and happened repeatedly during our visit.

Anne and Ali Evaluating Our Patient With Focal Seizures

Anne and Ali Evaluating Our Patient With Focal Seizures

Anne Demonstrating Her Neurology Exam

Anne Demonstrating Her Neurology Exam

She had been receiving care in Arusha at one of the major hospitals there and the family was certain she had had a CT scan, but didn’t have the film or records. Luckily we found an old chart for her here at FAME that confirmed she had had the CT scan in the past and that it had demonstrated multiple strokes and not anything like a tumor. She had a pseudobulbar affect due to her bilateral strokes so she often cried and laughed at the same time.

Bebe

Bibi (Photo by Ali Mendelson)

She remained awake during her episodes and given what we had observed, it was clear that she was having recurrent simple partial seizures consistent with epilepsia partialis continua, or EPC. Since she had been having some mild agitation we decided not to place her on levetiracetam and rather started her on valproic acid which should be absorbed rapidly and she could be loaded orally as we don’t have IV anticonvulsants here at the present time.

We began our outpatient work with three patients who had seen us over the last two weeks and were asked to return. There was a gentleman with a radial nerve palsy who was gradually improving and another gentleman with Parkinson’s disease and tremor who we had placed on carbidopa/levadopa and was doing much better than we had originally seen him.

We also saw the 18-year-old young woman who we had seen two weeks ago with seizures that were worse on carbamazepine and was our very first EEG patient here at FAME, with the study demonstrating generalized spike/wave discharges consistent with a primary generalized epilepsy – one that would potentially worsen on carbamazepine – and she was switched to levetiracetam, a much more appropriate medication for her condition. Her mother reported to us that she had had no further episodes of seizure or the confusional episodes she had been having since starting the new medications. She was also now more able to help around the house and was acting normal again as she hadn’t been for some time. Had we not had the capabilities to do that study, we would have been guessing in treating her as her initial story had sounded much differently than it had turned out. This 18-year-old woman will now hopefully be able to lead a productive life, perhaps marry and have children of her own, and without the continued stigma of uncontrolled epilepsy.

Our Patient With Severe Tremors

Our Patient With Severe Tremors

I had seen a wonderful Maasai gentleman one year ago who suffered from a fairly significant essential tremor and had placed him on propranolol to help control it. He returned today with his young son who spoke excellent English, Swahili and, of course, Maa, and complained of the same tremor. He hadn’t returned in the interim for refills which is so often the case as the people here are not used to taking a chronic medication and it is always so difficult to get that message across to them. Thu was happy to see the patient as she will be doing a movement disorder fellowship next year and she took the opportunity to videotape his examination. It was difficult to tell whether or not he had had any benefit from the medication I had placed him on last year, so we made sure that both he and his son understood the expectations for the medication and elected to retry and to titrate to a higher dose this time. They live two hours aways so it’s not the easiest for them to return often, but I strongly encouraged them to return in March when we are back.

Jacob's Relative

Jacob’s Relative

Later in the morning we evaluated an elderly Iraqw woman who was related to Jacob from reception and spoke only Iraqw, so Jacob helped translate for her. She didn’t have much wrong with her neurologically other than some neuropathic pain for which we prescribed our favorite drug here, amitriptyline, and told her also to exercise her right shoulder which had significant arthritis and was beginning to freeze.

Fima returned this evening after traveling to Dar es Salaam to help Flying Doctors transport the patient who had suffered a heart attack and needed to be transported to Muhimbili University yesterday. It was an exciting trip for him as he was able to visit with a friend who is a resident at Muhimbili along with a nice sight seeing flight to Dar. Today’s trip only took him to Arusha, though, and he had to catch a van back to Karatu which was another two hours on top of the flight from Dar.

Tomorrow is our last full day here at FAME and it is always sad to think that I will not be back until March. But at least I know I will be back and each time with a new set of residents who will experience this amazing place for the first time. And each time I will share in their experience and recall the first time I came to FAME so many visits ago and somehow knew that I was meant to return.

October 27, 2015 – The Wonderful Staff of FAME…

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The Wonderful Staff of FAME… I’m sure I’ve spoken of the fantastic staff at FAME previously, but spending time in the cantina this evening while watching them prepare mandazi with Thu and Paulina made me realize how easy it is to forget what it takes to make a facility like FAME run smoothly. Most of the staff have been here from the very beginning and it is easy to see on a daily basis how incredibly dedicated they are to Frank and Susan, FAME, the patients we see and to the community in general. Ema and George have helped me so many times with my vehicles here, whether it be for a flat tire, pulling me out of the mud after being sunken to my axles, or towing me back to FAME from the Crater entrance after our clutch disintegrated one unfortunate morning. It really isn’t those times that come to mind, though, when I think of them – it is the wonderful greetings I receive from them every morning when I arrive and throughout the day that remind me that this is a family here and not just an ordinary work place.

Ali and Anne Evaluating a Ward Patient

Ali and Anne Evaluating a Ward Patient

Ali, Anne and Thu Evaluating a Ward Patient

Ali, Anne and Thu Evaluating a Ward Patient

Jacob, Mary, Veronica and Sokoine, who sit in reception and keep the outpatient clinic running smoothly every single day despite the tremendous growth we’ve seen at FAME over the six years I’ve been coming. They must triage the patients and determine who we need to see as opposed as the regular clinic patient which can be an incredibly tough job. And even though we see patients who may point to their joints when we ask “shida na nini,” it is easy to remember how tough their job can be at times. Mama Mshana and Safi are the head nurses that run the hospital wards that now number two and can handle a total of 24 patients. The second ward is primarily for maternity so we have a constant flow of mothers and babies including premies like the little Maasai boy we have there now. They are in charge of a fantastic group of nurses that round with us every morning and take such incredible care of their patients. And how can I forget Brad, who is in charge of education for both nurses and doctors and though he has been here for less than a year, it seems like he’s been here from the beginning as well. FAME’s lab, which was built and is run by Joyce, a long-term volunteer who lives here nine months of the year and is home in the States for the other three, has Anthony, our Tanzanian director, Julius and Fatuma, all of whom have been here for many years. They run an amazing facility considering it is in rural Tanzania where we have immediate access to automated blood counts, chemistries and assorted other labs. The residents are amazed at how quickly our results return which is always faster than it is at home. They even ran a solar powered portable lab during our trips to Lake Eyasi for mobile clinics that had most everything other than the automated testing.

Paulina, Thu and Julianna Making Mandazi

Paulina, Thu and Julianna Making Mandazi

The clinical officers that I have worked with most closely and have been here for so long are Dr. Isaac, Dr. Ken and Dr. Anne – they are sponges for knowledge and working with them is a privilege each and every time. Dr. Ivan, who I have worked with since the beginning as a clinical officer and recently returned from two years of Assistant Medical Officer School has always been a steady resource for me regarding local medical information. Dr. Gabriel, the MD I have worked with here has always shown a keen interest in learning as much as he can from us when we’re around. I have enjoyed working with him on our mobile clinics to Lake Eyasi where we took long hikes during our free time into the hills surrounding Gidamilanda.

Thu and Julianna Rolling Mandazi

Thu and Julianna Rolling Mandazi

I cannot forget to mention William Mhapa, who I began working with as an outreach coordinator for my neurology mobile clinics and who is also the main HR person at FAME now because he is so qualified. Without him, our mobile clinics would not have been as successful as they have been in the past. Eva, who has been our housekeeper here from day one, takes such amazing care of us with nearly daily laundry and even making our shoes spotless from time to time given the orange mud and dust we have here. As I’m typing this, Hamsi just ran by our house to the check the borehole below to make sure our water supply is safe. He is definitely the hardest working individual here at FAME as he never stops and essentially keeps the place running whether it be the water supply or the garden for our food that is made every day for the staff.

Double, Double Toil and Trouble - Thu, Paulina and Eliza Making Mandazi

Double, Double Toil and Trouble – Thu, Paulina and Eliza Making Mandazi

And that brings me to the kitchen. Samweli is our head cook who I have known now for five years and does a wonderful job running the kitchen that makes the daily lunch for all the staff here seven days a week as well as dinners Monday through Friday for all the volunteers that are brought to our houses and ready for us at the end of the day. This afternoon, they Julianna and Eliza were making mandazi for tea tomorrow and they had agreed to show Paulina and Thu how to make them. They are essentially like a beignet from New Orleans with a little bit of spice added and are deep fried. Freshly cooked and warm they are simply amazing. They are still delicious the following day, though, and are the highlight of our morning chai masala (African spiced tea) which is served every morning from at around 10:30 to 11:00.

Baby Girl

Baby Girl

Baby Boy

Baby Boy

I am certain that I’ve forgotten to mention more than one of the amazing staff here at FAME and it is not for the fact that they have gone unnoticed. It is only that I cannot immediately recall every one of the lovely people that I have worked with over the last six years while volunteering at FAME. And I have not even begun to mention those volunteers who I have had the honor to work with at various times. And then there is Frank and Susan, Caroline, Joyce, Paulina, Will, Nancy, Jeanne who are the staff that have made it possible for me to have changed my career and who keep this organization running so that I can continue to return time and time again.

Paulina Holding One of the New Babies on the Ward

Paulina Holding One of the New Babies on the Ward

Bonding

Bonding

Happy Grandmother and Granddaughter

Happy Grandmother and Granddaughter

Baby Girls on the Ward

Baby Girls on the Ward

We also made another delivery of baby blankets to our new babies on the ward from the last day. Mildred Staten and her group in Philadelphia are now quite popular here with the new mothers and babies. The babies are not given names until well after their birth so on the wards they are all generic and called either “baby girl of…” or “baby boy of…”, but are still the cutest thing this side of Arusha!

October 26, 2015 – A Triumph for the Epilepsy Team…

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A Triumph for the Epilepsy Team…

Our morning began with an unfortunate case that had just arrived to the ward of a ten-year-old boy with a several month history of inability to walk, was non-verbal and poorly attending, and unable or refusing to eat. He was severely emaciated and his examination suggested to us that he likely had a central process such as a brain tumor or mass. His mental status (eyes open and awake, but not responding to us) was concerning for the possibility of non-convulsive status epilepticus. The only way to rule this out would be to get an EEG. I spoke with Daniel and Patricia (two of our three nurses who were trained over the last weeks) and they immediately jumped into action with no hesitation or trepidation.

Daniel and Patricia Applying Electrodes To Our Ward Patient

Daniel and Patricia Applying Electrodes To Our Ward Patient

Within an hour, they had the boy in the ER suite (our makeshift EEG lab) and were preparing to get the study underway. I checked in on them from time to time, but they required no assistance which was just an amazing situation considering they had just been trained. The study revealed only diffuse slowing, perhaps greater on the right than left, that suggested his mental status was related to the underlying process and not the fact that he was having continuous seizures. The fact that we were able to determine this was a triumph for the epilepsy team and Cara who had worked so hard over the last several weeks to make this possible. Without this information we would have been left with this question unanswered and unable to have treated him in the same manner.

Thu and Dr. Anne Evaluating Our Epilepsy Patient

Thu and Dr. Anne Evaluating Our Epilepsy Patient

Daniel and Patricia Setting Up the EEG Study

Daniel and Patricia Setting Up the EEG Study

Daniel Monitoring the EEG Study

Daniel Monitoring the EEG Study

Looking On During the EEG of Our Epilepsy Patient

Looking On During the EEG of Our Epilepsy Patient

Our third patient in the office that morning was a 28-year-old woman with at least a ten year history of month episodes that were very concerning for seizure. She had been on a very low dose of phenobarbital briefly without benefit, but had been taking no medications in some time. The family also gave the history that she remained confused for up to a week after her seizures and the last event had been six days ago. She was clearly confused and our concern again was for the possibility of non-convulsive status epilepticus as the cause of her mental status. Enter the new FAME EEG team who immediately said “hamna shida” (no problem in Kiswahili) and that they would do it for us shortly. They brought the patient to the lab and performed another complete EEG that clearly ruled out status epilepticus for us and meant that her mental status was not secondary to ongoing seizure activity which allowed us to proceed with treating her after taking this off the table.

Amazingly, the first day of clinic after the epilepsy team leaves we have two patients who presented with the question of non-convulsive status epilepticus that would not have been answered had it not been for the fact that FAME now has a crack EEG team trained who jumped right in handled the situation. Kudos to Cara Linenbroker for her excellent training of the nurses here and to Danielle and Lindsay who worked with them as far as interpreting abnormalities. We are setting up a mechanism of getting the studies to Penn and for the time being select images from the study will be sent home to be read. Ultimately, we’ll be able to send home the entire study and have it read remotely from the States and this process will greatly enhance our treatment of epilepsy patients here at FAME, even in our absence.

A Tanzanian Ambulance!

A Tanzanian Ambulance!

During the middle of the day, we heard a foreign sound here at FAME – an ambulance! For the entire time I’ve worked here at FAME I have never seen an ambulance on an emergency call and the reason for this is that there are no services here for the most part. There are no rescue squads, no ambulances, no EMTs. You’re essentially on your own if you get into trouble. Early this morning, Frank and Fima had responded to a call from one of the lodges here that one of their guests had collapsed and on arrival the patient had already expired, very likely from a massive heart attack, despite thirty minutes of CPR.

FAME Staff Responding to Ambulance Arrival

FAME Staff Responding to Ambulance Arrival

Transporting the Patient to the Ward

Transporting the Patient to the Ward

The ambulance arrived at FAME and everyone immediately responded to ge the patient to the ward and evaluated as soon as possible. He was unstable on arrival and quickly stabilized and appears to have had a heart attack, but is in need of a catheterization that will likely be done in Dar es Salaam at Muhimbili University in the coming days.

The General Neuro Team - Thu, Me, Ali and Popi Sitting in Front

The General Neuro Team – Thu, Me, Ali and Popi Sitting in Front

It was actually the quietest Monday in memory as people are still on edge about the election and staying at home. They are releasing results of individual polling areas, but the final vote is not to be announced until Thursday or Friday. Everyone is still praying for peace regardless of the outcome. We spent the evening with Daniel Tewa and his family again, this time for a lovely dinner at his daughter’s, Isabella’s, house. Afterwards he had Thu wearing a wedding skirt this time and we took the opportunity to take some more photos of everyone.

From Left - Fima, Pauline, Brad, Serena Tewa, Thu and Me

From Left – Fima, Pauline, Brad, Serena Tewa, Thu and Me

From Left - Pauline, Fima, Elizabeth Tewa, Thu, Me, Daniel Tewa, Brad

From Left – Pauline, Fima, Elizabeth Tewa, Thu, Me, Daniel Tewa, Brad

Cheering the Election?

Cheering the Election?

Daniel is such a wealth of knowledge of the Iraqw culture and of Tanzania in general and is the most generous person in the world. He has opened his home to everyone I have introduced him to and has become like family to me. We are so privileged to have him as our friend.

October 24&25, 2015 – An Election, Blankets for Babies and Ngorongoro Crater…

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An Election, Blankets for Babies and Ngorongoro Crater…

The elections have been weighing heavily on everyone’s minds here, both Tanzanians and ex-pats alike. The ruling party has been in power since their independence and concern over the legitimacy of this election remains quite high. Driving to the airport on Friday night there was a huge gathering for the opposition in Usa River as Northern Tanzania and specifically Arusha district is one of their strongholds. We have been receiving email alerts over the last weeks to steer well clear of any political gatherings both before and after the election as the announcement of the official results from the Sunday, October 25, election will be on Friday, October 30.

To be honest, though, it has been fascinating and exciting to be here during the elections and to date everything has been very peaceful. There is still talk of services being disrupted after the election, such as telephone and power, but that remains to be seen.

I awakened on Saturday morning to another wonderful breakfast with Pendo and her family. I had to spend the night in Arusha as the drive to Karatu at night is very dangerous and is never undertaken except for emergencies. I drove back with Pauline and Joyce, both of whom took the opportunity to hitch a ride with us on Friday and spend time with friends before returning to Karatu with me on Saturday morning. The drive was again the same beautiful regions of the Great Rift Valley that I mentioned earlier and it was a gorgeous day to boot. We arrived back to FAME by noon to find the clinic as quiet as I’ve ever seen it. It was the day before the election and everyone was remaining very cautious not to mention the fact that no one wanted to stray to far from home and possibly miss the opportunity to vote the next day.

Happy Mom and Baby Boy

Happy Mom and Baby Boy

Even Happier Grandmother with Granddaughter

Even Happier Grandmother with Granddaughter

 

Another Happy Mother and Baby with Blanket

Another Happy Mother and Baby with Blanket

Happy Mother Post C-section with Baby and Blanket

Happy Mother Post C-section with Baby and Blanket

The low volume did give us the opportunity to give out baby blankets to the new moms in the maternity ward, though. I had been given fourteen beautiful knitted baby blankets by Mildred Staten of Philadelphia who along with her friends knit blankets for newborn babies and mothers in the Philly area. It was such a generous gift and we brought them here in one of our checked duffels (actually Cara brought them with her) along with EEG supplies and other things for FAME. There had been two C-sections the night before (one of which Ali had the opportunity to fully document with photographs that are amazing) along with another baby that had been born in the last several days. The mothers loved the blankets and we wrapped each of their babies in the blanket and had them held.

Father and Son

Father and Son

Little Premie Maasai Warrior

Little Premie Maasai Warrior

We also gave a blanket to the little Maasai premie who is still fighting with the strongest of wills. He remains under one kilo and is not out the woods by any means. His father came into the nursery while we were there and thanked us for the gift. Being born at 26 weeks would be a challenge anywhere in the world, but is exponentially harder here considering all of the challenges and hurdles of life in general in East Africa. The little Maasai looks so very fragile, but we are repeatedly reminded that he will grow up to be a “warrior” one day.

Pauline and Baby Properly Wrapped in Blanket

Pauline and Baby Properly Wrapped in Blanket

Sunday was election day, of course, and we were heading the Crater knowing that it would be peaceful since the animals are, for the most part, apolitical. Leaving FAME at 6am we passed a polling place burdened with a long line already despite not opening for at least an hour. It was clear that all citizens in this region had plans to take advantage of their right to cast a vote for either the current incumbent party or the opposition party. Again, it will be days before the results are known or announced so there will be at least another week of some unrest and then who knows what will happen. Regardless of the outcome, the hope by all is for a peaceful continuation or transition. Time will tell whether this will be the case.

Hippo Pool in the Crater

Hippo Pool in the Crater

The Ngorongoro Crater is always a magical experience. It is a huge caldera 2000 feet deep and about ten miles in diameter that contains it’s own ecosystems. Most of the animals there do not migrate and it is home to a growing population of black rhino that was at one point endangered. It is the most fun for me to drive in as I’ve gotten to know the roads well having done it several times before and it has easy landmarks with which to guide by. It was a beautiful day, though quite windy, which means that the rhino stay in the low trees as they rely on hearing for defense (even though the adults have no predators there) and won’t stray onto the crater floor without their main sense of detecting danger.

Keeping an Eye on Us

Keeping an Eye on Us

A Watchful Bull Cape Buffalo

A Watchful Bull Cape Buffalo

Cory Bustard - Heaviest Flying Bird in Africa

Cory Bustard – Heaviest Flying Bird in Africa

Our Lunch Spot in the Crater

Our Lunch Spot in the Crater

It was also extremely dry in the crater, drier than I had seen before, and the animals were mostly gathered in the wetland areas. We were mainly looking for lions, though, and we found a few before lunch that looked initially like they were possibly hunting. After watching them for half an hour, though, they finally settled down to relax and we were hungry so it was off to the lunch area which is a beautiful lake with hippos and lots of birds.

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Cape Buffalo Getting Some Facial Work

Cape Buffalo Getting Some Facial Work

Mother Lioness with Toddler

Mother Lioness with Toddler

Mother and Child

Mother and Child

Later, after driving around the crater and not finding any other lions we went back to see what the others we had seen were doing. The whole pride was now visible – there were at least eight females, one baby and the male. The two females were still active and seemed to be challenging some Cape Buffalo, not a typical behavior for so few lions and the big bull buffalo finally made it known to them that he was not happy being stalked by charging them and making sure they knew he was serious. We left the crater without our prize of seeing rhino that day, but knowing we’d be back again another day when it was less windy and hopefully not as dry.

Bathing Hyena on High Alert

Bathing Hyena on High Alert

October 23, 2015 – A Day To Reflect…

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A Day to Reflect….

Having a day to reflect on the good fortune I have had to have come across Tanzania, FAME, Frank and Susan, the Temba Family, and all the others I have met during my six years here is often a rare thing. While on the way to Arusha today taking half our group to the airport to fly out tonight, Cara read us an article she wrote for an EEG monthly newsletter that recounted our history here and, in particular, how I came to be here. I’ve told the story countless times, but hearing it read out loud by someone other than me just seemed to reinforce how amazing the journey has really been and how blessed I am to have been a part of it.

Gloria Sarett, on left, during a water fight while at the University of Colorado, Boulder

Gloria Sarett (Rubenstein), on left, during a water fight while at the University of Colorado, Boulder, early 1950s.

But I also often think of those who were, and continue to be, responsible for instilling in me the qualities that enabled me to find this place. I have been constantly reminded of the adventurous spirit my mother instilled in both my brother and me, from early camping trips to Death Valley in our old beat up station wagon, not knowing a thing about the dirt road we were driving up, to the week long hiking trips we took in the Sierra Nevada and the John Muir Wilderness as young teenagers. It was also the interest in science, though, that she brought to us at young ages, and in me particularly, an interest in anthropology. I recall waking up before sunrise one morning several years ago while on mobile clinic here to the Lake Eyasi region of the Great Rift Valley and realizing that man took his first footsteps on the very ground on which I was standing. I immediately took my phone and called her, knowing that it would take some serious explaining considering she was in the early stages of dementia, but also knowing that she would somehow understand. These moments are gifts and it is these gifts that make us who we are.

Anna and Daniel at Ngorongoro Crater Camp, 2009

Anna and Daniel at Ngorongoro Crater Camp, 2009

Leonard and the Rubensteins, on Safari, 2009

Leonard and the Rubensteins, on Safari, 2009

The Extended Temba Family, 2011 (minus Gabriella, now 9 months)

The Extended Temba Family, 2011 (minus Gabriella, now 9 months)

While climbing Kilimanjaro with my brother at the beginning of this trip, he commented to me how happy my mother would have been to know that the two of us were together on that mountain at this time in our lives. Both of us were acutely aware that she somehow knew at that very moment and, for that matter, probably knew years before that we would have been together on the side of that mountain doing exactly what she had raised us to do – challenge ourselves and to never stop exploring. Having Nick there with us was an added extra reinforcing that we’ve instilled this same ethic in our six children, all of whom continue to amaze us with their strength and resilience.

The Rubensteins on top of Kilimanjaro - Nick, Jeff and Mike

The Rubensteins on top of Kilimanjaro – Nick, Jeff and Mike

Though I had always dreamed of visiting Africa, it is truly because of my children that I am here and Kim who encouraged me to bring them. In that first auspicious meeting with Dr. Frank, having been brought to an unknown medical clinic by our guide and now good friend (and family), Leonard Temba, I was introduced to an opportunity that has come to fruition many times over, and has become such an essential part of who I am. Having returned home after our safari, there was just something I knew was incomplete, unfulfilled and necessary for me to do. Despite tremendous difficulties at home with my father’s illness and subsequent death and my son’s battle with addiction, we overcame them as a family and with everyone’s support I was able to return to Africa and FAME.

On Mobile Clinic in 2011 With A Young Patient

On Mobile Clinic in 2011 With A Young Patient

So, as I drive my Land Cruiser though Northern Tanzania and regions that are so rich in history beyond what anyone can truly imagine, I am forever thankful to those individuals who have made me who I am and who I continue to be, and I am forever grateful for these opportunities I have had in life and to have shared in the lives of others. These are the blessings that we reflect upon every day we rise and every day we lay to rest.

October 21&22, 2015 – Dinner at Carnivore and Psych Day at FAME…

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Dinner at Carnivore and Psych Day at FAME…

Our Wednesday was a somewhat nondescript day which really means it is hard for me to recall specifics about the many cases we saw. There are some days that you just plow through the neurologic cases and though they are all so interesting in their own right, they are often also similar. We’ve had two general neurology teams working while Danielle and Lindsay have been working with Cara and the nurses to teach them EEG in such a short time. If there is an obvious epilepsy case then we try to have Danielle and Lindsay see that patient, but we have to be cognizant of the fact that FAME is running their regular clinic at the same time so we don’t have unlimited clinical officers or translators to work with. So far, though, we managed to run through the patients like a well-oiled machine with few interruptions sorting out those that should be seen by the epilepsy group and those to be seen by general neurology.

Patricia Measuring a Patient For EEG

Patricia Measuring a Patient For EEG

Daniel and Patricia Performing an EEG

Daniel and Patricia Performing an EEG

Later in the day, the nurses were working on firming up their proficiency of performing EEGs checking themselves with measurements for the electrodes and running the EEG machine. They have been remarkable in picking up the necessary skills which gives us confidence that this is something that will be helpful going forward in treating our epilepsy patients in between our visits here. It has already proved invaluable in caring for many of the patients we’ve seen and will continue to be so.

We finished early enough in the afternoon to head to town before dinner to pick up some things at the fabric store that had been ordered by Thu and Fima. Thu had a wonderful skirt made out of lovely fabric and Fima had a pair of pants made that are actually very cool and perfect for working at FAME. The exciting thing, though, is that we had planned to have dinner at Carnivore. Now this might sound a bit intimidating to many of you, but they specialize in serving grilled chicken and chips (french fries) and they are a bit of a local legend. We had all planned to meet there for dinner (twelve of us) and so we had called earlier in the day to order the chickens and chips – It’s like most local Tanzanian restaurants, which have dirt or gravel floors, plastic tables and chairs, music and dim lighting, Carnivore does not disappoint. Add to the wonderful decor a smoky grill in the middle of the restaurant where the cook is grilling your whole chickens before they are pulled off the grilled and very skillfully cut up into pieces using a butcher’s cleaver. Whack, whack, whack and you have a plate of the most wonderfully tasting grilled chicken anywhere. Now, I will warn you that these are not the plump juicy chickens found in most US grocery stores or restaurants, but rather a bit less meaty of a fowl that has had a much harder life than it’s American cousins. Still, we all had enough to eat with the chicken and chips and beer to go around. It was quite a nice evening out for all of the FAME volunteers.

Ali Giving Her Lecture

Ali Giving Her Lecture

Fima assisting Ali

Fima assisting Ali

The following morning began with a lecture by Ali using a case presentation from last week on the gentleman who had suffered an intracranial hemorrhage and was transferred to KCMC. She ran through why we had immediately thought that he had suffered a bleed rather than a stroke and some of the treatment decisions that were made with that in mind. It was an excellent presentation that really gave the doctors here not only the criteria we use to decide clinically whether we think someone has had a stroke versus hemorrhage, but also what to do when initially evaluating along with initial treatment options.

We jumped right into our first patient of the day who was a young 22-year-old Maasai man who was brought by his father and brother because of strange behavior. He had already accosted several of the volunteers (Cara and Pauline) who were shaken up by the affair and it was quite clear that this was going to be one of those cases where I hear “but you’re the closest thing we have to a psychiatrist here in Northern Tanzania” which is the truth unfortunately. We brought the three into the exam room with me standing between the patient and Danielle, Lindsay and Ali and Zawadi, our translator, standing near the door. Lindsay did a great job interviewing the patient and the family so we could have some semblance of what the history had been for this young man. It was quite clear that he was acutely psychotic and also quite agitated and nearly manic. I made the offer to examine the patient which was happily accepted by Lindsay as the patient remained quite physical throughout our interview process and was even perhaps a bit more so with the discussions we were having.

He had gone off to Dar with his brother when he was 18 and the two were working as security guards there. At some point, they were on a beach watching some wazungu (white people) swimming and his brother jumped in to join them. Not knowing how to swim, though, he promptly drowned. The father and brother confirmed this story, but what happened after that wasn’t entirely clear. He eventually made it home to his family and over the last year had acted strangely as he was acting today. He had gone into the forest on his own for part of the time and was continually speaking of things they didn’t understand and roaming around.

He had both hallucinations and delusions as well as paranoid ideations so we suspected he was schizophrenic or at least schizoaffecctive, though there was still a small possibility that this was bipolar disorder, but the issue at hand was that he needed to be slowed down rather quickly as he was a risk to himself and others. He emphatically denied any alcohol or drug use while in Dar or back at home which his family confirmed. We checked all the appropriate labwork to rule out things, thyroid, HIV, syphilis, etc., etc. Luckily, Frank had requested that I bring injectable haloperidol with me this trip just for this occasion so we gave him a 5 mg dose IM and watched him for about 30 minutes. It didn’t slow him down one bit. The rule is that you double the dose each time so I gave him another 10 mg along with 4 mg of lorazepam (another tranquilizer) and he continued at the same pace for perhaps 20 minutes and then began to look slightly drowsy. I asked Sokoine (now also enlisted into the security detail) to ask the patient if he felt sleepy and he told us he can never sleep, and then in less than a minute his head was promptly on his shoulder and he was out like a light. Success!

His labwork was all unremarkable and our diagnosis was acute psychosis, most likely schizophrenia or schizoaffective disorder, but with the small possibility this could be a presentation of bipolar disorder. We treated him with olanzapine, which is an oral antipsychotic, with the hope that this would at least help with this issue, but made sure his family understood that he would likely need another medication such a valproic acid. Frank, of course, didn’t want him to return until I was back in March, but we told the family to return if the medication wasn’t completely helping with the thought that this would likely be the case. We let him sleep for some time and then the family was finally on their way back home to their boma in the Ngorongoro Crater area.

Several patients later we had another psychotic patient, but luckily not nearly as threatening as the earlier one. He was an elderly patient who presented a letter from the district office notifying anyone evaluating him to be aware that he was a longtime psych patient and to take this into account in discussing his complaints. Sure enough, he was off his medications and had been doing tremendously better before when he was on his medications. A new prescription for olanzapine and he was on his way and happy.

At the same time, the epilepsy team was seeing another patient who had been treated for some time and seen by us last visit at which time they had been doing well with no seizures. They were on carbamazepine and were referred back to consider withdrawing medications. They decided to hook them up to the EEG machine and low and behold, they had very frequent generalized discharges meaning that they would likely have seizures off medication, but more importantly, that the carbamazepine was not the right medication for them as it could exacerbate other seizure types. The patient’s medication was promptly converted over to levetiracetam, a much more appropriate medication for this type of epilepsy. Another example of how the EEG machine will clearly change the management of epilepsy here and change patient’s lives going forward.

We had finished all of our neurology patients for the day and I was sitting by the lab checking emails when Danielle came out of the ER ward (where we’re doing our EEGs) and called to me that she needed my help “right away.” Danielle does not overreact, so I promptly dropped everything and ran down the steps to find out that their patient in the EEG lab was having a non-epileptic event during her EEG and was thrashing about on the table requiring restraint. The problem was that she was HIV+ and was putting everyone at risk so we needed to sedate her post haste. I ran to the clinic to grab some injectable medication and ran back to find that she had luckily slowed down in the meantime and didn’t require the medication. Then the long process began of working with the patient to help with her non-epileptic events which is tremendously more complex than treating if she had epilepsy and requires predominantly therapy and some insight by the patient. Lindsay did a fantastic job of talking with the patient using translators, not the easiest considering the topics that were being discussed. She also had a very significant stage II foot ulcer that needed debridement so she was admitted for that and also to keep an eye on her given the new diagnosis of non-epileptic events. Despite the fact that the episode was clearly not a seizure clinically, she probably would not have had it if she weren’t hooked up to the EEG machine, so the technology once again served to greatly impact our care of the patient and will ultimately benefit her greatly. Most importantly, it will keep her off anticonvulsants that would have interfered with her HIV medications so likely saved her on that account as well.

We ended the day at Frank and Susan’s house for a wonderful get together of all the volunteers for the traditional going away as Danielle, Cara and Lindsay will be leaving tomorrow and we will be leaving in a week. Dr. Marcus and his wife, Susanna had also arrived recently and will be leaving in several weeks. Pizza, samosas, cheese and crackers and wine and beer. A feast here that was much appreciated. Pauline acknowledged everyone’s work with FAME hats and lovely Tanzania scrub shirts as gifts and most notably, Frank stayed up well beyond his normal bedtime of 8 to 8:30! It was a wonderful last day for the epilepsy and EEG team and a visit tremendously more successful than any of us had imagined.