I set up a neurology clinic in a rural area near Tegucicalpa(Teguz), the capital. Our clinic is located within a small medical center. We serve an area of 260,000, most of whom have never been able to see a neurologist. I stay at a large orphanage next door.
Lots of kids from the orphanage have hyperactivity and behavior disturbances; many with abuse and trauma. For instance, an 8-year-old boy witnessed his parents’ murder when he was 3. He has recurring thoughts of killing someone, anyone.
We frequently encounter ADHD with dyslexia, and bedwetting is common. Access to therapists is very limited.
I saw a 23-year-old mom with her 3-year-old girl, who is basically anencephalic: almost no brain (just liquid), and she has a shunt draining the brain cerebrospinal fluid. Mom seemed surprisingly okay, considering the stress. Her only concern is that we control the child’s seizures. In general, the moms go to incredible lengths to sacrifice for their kids.
Most patients are very poor; we do some of the labs, and provide many of the meds. They are incredibly grateful. The lab(blood) tests are surprisingly expensive, so I minimize them. Access to MRI scans is extremely difficult; it may cost a patient 2 weeks(or more) of earnings to obtain a CAT or an MRI, so they go without the test.
We are working on translating a long article into Spanish (this is a long work in progress.) I am also putting together a formulary of neurology meds available in Honduras (including non-neurology meds, that may be helpful for neurologists). There is no PDR or resource in Honduras listing the neurological meds. I have to scramble and call pharmacies in order to figure out what meds are available.
We will distribute this article and neurology formulary (an official list of medicines that may be prescribed) to every doctor (if we can) in Honduras, and also other countries that are primarily Spanish speaking. We will do this via email, mailings, and working with heads of the various associations.
I have begun an exploratory investigation of the feasibility of starting a Honduran headache society. It is in process, probably in conjunction with the Honduran epilepsy society and/or the Neurology society. I floated the idea of a neurology chat board, where Honduran neurologists can communicated with each other about issues and cases.
I am reaching out, and have spoken with, the head of the Honduran Neurology society, and the head of the teaching hospital (who is a famous international neurologist).
There is a lot of epilepsy, while some can afford the better meds, most cannot. They cannot afford tests (we offer free blood tests for some, but for some reason they are expensive here.)
Many of the epilepsy patients are on the wrong meds in the wrong doses. The problem is they cannot afford the newer meds, and often not even the old (Dilantin/phenobarbital) ones. I do worry that we are creating a dependency on our newer, better ones (such as Keppra), but when we lower seizures from 30 a month to 0, it saves a lot of brain cells.
The difficult epilepsy patients are the kids we see, 3 months to 3 years. It’s tricky figuring out what is available, in what (liquid) doses for the kids. I will work on piecing together a formulary of Honduran neurology meds (none is currently available.)
What strikes me is the enduring strength and resilience of the Honduran people, and the optimism. Plus, when something goes wrong (no power, internet, hot water) it seems more people know how to fix these things than back home. Maybe because not as many go to college, and they have to learn how to fix things themselves.
I had a neurologist (Sofia Dubon) sit with me here, and her husband (Rafael) is a neurosurgeon. We happened to see 3 neurosurgery cases, I was very lucky he was there (he checked the hydrocephalus shunt on one child). Turns out he helped to start the first epilepsy surgery clinic in Honduras. Coincidentally, in November, I saw an 8-year-old kid with epilepsy: despite medicine, he still has a grand mal (major) seizure every day. He has a seizure focus in his right temporal lobe, perfect for surgery to cure it……without the surgery, all they can afford is Dilantin (phenytoin), which eventually will kill his brain cells and other problems. So I looked in Chicago for a program to do the epilepsy surgery for free, but struck out and then here comes Rafael, who just began the surgery program here. Voila!! BUT locating this kid is a needle in a haystack; we finally found his chart; they don’t have a phone, but a nurse here knows his family (Update: the nurse did go to their house, but the mom is reluctant to try surgery; maybe later on.)
The internet goes off and on (it helps to use while I see patients: I can look up drugs, doses etc.) I decided to bring, on my kindle, all of my medical books, and drug guides; that way, I don’t need the ‘net. The food is great; hot water is a luxury.
The clinic is well run, considering limited resources and no specialist back-up. They staff the mini-ER 24/7. If a severe problem arises, not much they can do, but they handle almost all of it. Great staff, work very hard, paid very little.
I had a 79-year-old patient, suffered a new stroke (one day) on top of older ones. He could only mumble (but it is his right cerebral hemisphere, so he understood most of what we were saying. His daughter takes care of him (most people here have a dutiful family member who takes good care of them.)
I saw a 44-year-old woman with hemifacial spasm (one side of her face often is in spasm, eye is closed.) She never tried any meds. Botox is #1 for this, but unaffordable. She was thrilled to be given something to try and help. Follow-up: the next time I saw her, I mentioned the possibility of bringing in Botox. Interestingly, she was not interested, if it only gave her a window of 4 months improvement. With chronic problems, it is true: temporary fixes almost are a tease. Many do not want a treatment that only helps for awhile. Remember the movie Awakenings, with Robin Williams (playing a young Oliver Sacks). It was a true story about those with severe Parkinsonian-like problems, stemming from the Spanish flu of 1919. They received levodopa, and suddenly awakened, and were able to move (after 50 years!). However, it wore off, the people went back to their comatose states, and it was almost like a cruel tease.
PDR (Physician’s Desk Reference): there is none in Honduras. It is a continuing challenge to figure out: 1.what meds are theoretically around, 2. which ones are actually available (they often are not in the pharmacies), and 3. which meds the patient can afford (if they only can afford old time cheaper drugs, such as Dilantin, then we use whatever they can afford. However, the newer drugs have significant advantages: less side effects, better efficacy.) There are many judgement calls: is one major seizure every 3 months “well controlled? For instance, a 35-year-old woman came in on Dilantin for her seizures. She has one epileptic attack per month. While she has no side effects from the Dilantin, over the long-term it causes major problems (gums, cerebellum, skin). I can switch her to the Keppra that we brought in (much better drug), but she takes 3 buses to get to our clinic, and it takes all day. She lives near the Nicaragua border. Actually, she went to Nicaragua for a free CAT scan; medicine is pretty good there. So, I know if I switch her, she will not be able to come back every month for the Keppra, and it is unaffordable back at home. So, I leave her on Dilantin, start B vitamins (necessary on Dilantin), and emphasize brushing her teeth.
We talk about diet and exercise (have sheets in Espanol on these) to everyone, but most get enough exercise day to day. Diet is not great, and is usually what they can afford. I ask everybody’s occupation. There are many who are a “Ama de Casa” (housewife), some farmers, drivers, office workers, nurses, among others. We do see a fair amount of nurses and doctors. The doctors often are unemployed; if they do not pass specialty exams (which are once per year, and very difficult), being a general doctor is rough. Often the pay is poor, or the government has no money for that month’s paycheck. There are not many safety nets here in Honduras.
Practicing medicine here is easier than in the U.S., as there is no HIPAA, no malpractice, and no insurance. It’s just you and the patient.
Patients are incredibly appreciative, they may wait a long time, and it often takes them hours to get here (multiple buses, and walking a long way.) Of course, we are giving them free visits, meds, and blood tests. In Teguz (the big city, which is the only place they could see a neurologist) a neurologist appointment costs $40 or $50, plus the meds (some seizure meds are very expensive here.) In addition, labs are surprisingly expensive. The average wage here is maybe $250 per month. CAT/MRI are too much for most people to afford.
An interesting 19 year-old young man came in who has Downs syndrome. Since 4 months earlier, when his favorite uncle died, he has had a number of issues. These include becoming very aggressive, fighting, not sleeping, impulsivity, sexually aggression, and agitation. He was on a psychiatric unit for 5 days. I thought he had Bipolar I, with mania. He was on the bipolar medicine risperidone, which controlled his mania 90%. However, he could not stop eating, and suffered other side effects. The doctor then switched to Abilify, with similar side effects. I thought we should go away from that class of drugs (the atypical antipsychotics), and prescribe Tegretol (carbamazepine, a seizure drug used for bipolar.) I wrote the possibilities for mom (mom was terrific, taking 24/7 care of him, but was very frazzled and depressed.) Problem is, he needs good psychiatric follow-up, and blood test. We are working on hiring a psychiatrist for our little clinic, but there are not many available. The parents do have some money for a psychiatrist. Therapy would help, but good therapists are difficult to locate. With acute mania, under the best of circumstances, it is a rough go.
The next day his dad came in (from Teguz, on his motorcycle) to ask me questions. We had lunch and talked about his son. It turns out, he speaks English and works at USAID, a successful violence prevention program in Honduras. He is very proud of the US, which does fund USAID. There is some anti-US sentiment. However, most people admire the U.S., and many young people only want to come and work in the U.S.A.. Their anti-violence programs are very similar to our inner city programs. Dad understood about the 3 classes of bipolar meds, which we discussed at length. He even knows the difference between cognitive behavioral therapy, and dialectical therapy. We discussed how difficult it is to parent a child with major psychiatric issues.
A mom and dad brought in their 11-year-old with severe autism; he is very aggressive and is non-verbal. He is on Risperidone, 3mg a day, (big dose: I noticed here they use large doses of antipsychotics, and also benzodiazepines; the pills come in that dose, so instead of using ¼ or ½ they say “take one a day”). The child has had 30% improvement from Risperidone, but has dyskinesias (abnormal movements, of his mouth) from it. I adjusted the meds to minimize this side effect. They come from far away (Teguz, the main city), and will follow up with a local doctor there. I hope to see him again.
I talk to people about meditation, but most don’t have a computer or a smartphone for the App. I need an easy sheet, en Espanol, on how to relax, breathe, meditate. We deal a lot with insomnia, but not as much anxiety/depression as back in the States.
We do a fair amount of teaching regarding basic diet and exercise. I have sheets on this that we hand out. Many get enough exercise just day to day, with their normal working activities. Many of the women are “Ama de Casa”, or working at home. They do a lot of walking during the day. We also hand out sheets on various aspects of migraines. I also need a good one on epilepsia.
The longer I can sit with someone, the more I find out about the person. At times, the people are hesitant to reveal their other conditions, particularly anxiety or depression.
I saw a 12-year-old boy with neurofibromatosis type I (old name=Von Recklinghausens’ disease.) Mom is intent on taking him back to Dallas for a surgery. I explained the (dermatologic, skin) surgery can be done here (unfortunately, it is a progressive disease, not good to have.) He is a very nice kid with a long, difficult road ahead of him.
A 55-year-old man comes in with a lifelong history of epilepsy. He had major seizures, which were not controlled, for years. He had tried natural meds (no help.) Finally, he was placed on a seizure med, finally, it helped. It was too late, he had lost too many brain cells. At this point he functions very poorly, is almost non-verbal.
With the epilepsy patients, you can tell about how many seizures, and for how long, they have had the condition. At age 20, with poorly controlled epilepsy, they are conversing, but a bit slow. At 30 or 40, speech becomes less spontaneous. The person often does not understand much of what we are saying. The family member they come in with does the talking (luckily, family is fairly strong here, they usually (not always) take care of siblings, parents, children.) By age 50 or 60, the person is sometimes wheelchair bound, unable to function at even basic levels. After years of seizures, they have a characteristic blank stare. We are hoping, with our meds and education, to avoid this fate.
A nicely dressed, classy, 67-year-old man with epilepsy came in. He is a merchant nearby, and needs an adjustment of his medicine. He has had no blood tests for years (we have funds to pay for the blood tests.) I think he will do well, and I will see him in 3 months. The sumatriptan (migraines) and Keppra ( which is a seizure and migraine med) that we brought in are major hits. I thought we would have enough for 5 months, but we may need more in 3 months. I will have to purchase local meds, or somehow get them here. FedEx is very expensive, and shipping to Honduras is unreliable.
A couple of sisters came in, I had given their other sister sumatriptan (for her migraines) on a previous visit. It worked, they also tried it, and want the same drug. We often find that, genetically, the same drug will work within families. There is also the “placebo by proxy” effect.
Next visit I will bring sertraline (for depression) and amitriptyline (very versatile drug) as well; these are inexpensive in the US, but very few can afford them here.
I am hoping another neuro (Dr. Dubon hopefully) will still want to be the neurologist here, every week. (Note: since this journal, Dr. Dubon does work at the clinic, almost every week. She comes in with her terrific neurosurgeon husband.) We now have a growing reputation (people in the main city, Teguz, are coming, sometimes sent from their neurologist there.) The next time I visit, they want me to go to the Hospital Escuela (teaching hospital), and speak to residents/staff. My Spanish is not good enough, but they said “no problema”…..and we have over 120 patients who want to come to the clinic, are on a waiting list; I plan on using Skype to treat remotely (since this journal, we have been successfully Skyping.)
(NOTE: since this journal was written, we have a nurse administrator, and are about to hire a young psychiatrist as well)
I have good forms for patients, and instruction sheets, but I need to design better intake forms (their forms are not good for our purposes)…..(NOTE: since this, we have upgraded all of our intake and progress note forms, big improvement. The clinic now has an organized system for our neurology charts and patients, and an actual “Neurology Filing Cabinet”.
Adios for now…..
Larry Robbins,M.D.