Paging Dr. Idon'tevenrecognizeaseizure

I would like to simply say that I learned a lot today and wasn't quite as frustrated as I anticipated being and leave it at that tonight. But saying only that doesn't seem fair to those of you who were praying for me so here is a play by play of the day if you want to read on.

I picked up the kids and their moms and was on the road to Mbale by 9:45. A good start as it seems to always take Ugandan families a little while to get in the car when I try to pick them up. We made good time and were to the neuro hospital by 11:00. There are no such things as appointments here so we waited. When we were called Joshua and his mother went first. I'm still trying to learn/understand this but questions and answers seem very circular here and never direct. I had to hold my tongue the whole “triage” instead of jumping in and cutting straight to the issue. Jessica (Joshua's mother) said that we were here because “he has stiffness in his joints”. In my head I'm thinking “What?! Is that really what you think your child's primary problem is?!” The registration clerk/triage person (not a nurse) asks “how long has that been a problem?” and continues along the stiff joint topic for a significant period of time. Now let me describe to you what we are all looking at. This is a 4 year old child who weighs barely 15 pounds. (7.1 kilos to be exact) His head is misshapen, he has severe scoliosis so can't sit up, is blind, has frequent seizures, can't speak, can't grip and is drooling constantly. Finally, I can't do it any longer and I interrupt and explain something to the effect “that the child was seen here in 2007 and the parents were told to come back for a CT scan to determine possible treatments. They didn't return because the drive was too long and the couldn't afford the trip or the diagnostic tests and were then sure that they couldn't afford any treatment on top of the other expenses. I've brought him back today, 3 years later, to re-evaluate and help them understand their options, and possibly help them pay for treatment that will improve the child's quality of life.” After my brief soliloquy I received a blank look from the registration person. After a strangely long pause where I had time to mentally review nearly everything I said to figure out where I went wrong she just pointed us back outside to the benches on the porch that serve as a waiting area. Ummmm.... After a thankfully short wait we returned to the office where we discover that the man who was sitting quietly behind us during the whole registration was the physician. As he starts to ask more questions I again vow to keep my mouth shut and let Jessica answer. He started with questions that I feel I answered minutes ago but think he possibly wants to hear it from the pt's mother. Then, having never even touched the child he tells her that Joshua has cerebral palsy and does she know what that is? and that this is how he is going to be for the rest of his life. Jessica seems to be getting smaller in her chair as he speaks so again I can't help it and interrupt. I start out trying to remain pleasant and ask him about the things that were suggested years ago like the CT and possible treatments. He says the CT is useless as it won't change the treatment plan (in my head “what treatment plan?!”) and there is nothing else. So, me getting increasingly frustrated as it seems like he just wants us to go (and he doesn't even know yet that I'm here with a second child and mother!). Still trying to remain pleasant I say that I really feel like even partial seizure control could help the child and possibly allow his poor brain to develop. He says something to the effect that he didn't realize seizures were a problem and maybe drug therapy was a possibility. I would like to mention that Joshua has a focal seizure about every ten minutes and many bigger ones throughout the day. During the course of the conversation with the doctor he had one where his little head cranked hard to his left, his breathing became ragged, his arms went rigid and only the whites of his eyes showed. I don't know how long it lasted but I can't believe the doctor really didn't notice! He explained that they only take care of neuro-SURGICAL patients, wrote me a referral to the CP clinic in Kumi, encouraged me to try phenobarbital and that was the end of it. We went back to the waiting area.
Victorina is the second child that I brought- a 2 year old girl who is lethargic, doesn't stand, walk or crawl or attempt to communicate. Last week I brought her to a pediatrician in Soroti who after a malaria test, urine dip and a check for worms in her stool had given me a referral letter to this neuro hospital because he said her head was big (wrote in the letter “possible hydrocephalus”). I realize in hindsight I should have listened to my instincts that this really wasn't neurological but he is an experienced doctor and I just figured he saw something I didn't. Anyway, while I was with Joshua the registration person had gotten them started so I had the pleasure of skipping that step. I wonder just a little about the conversation but suspect it would have just added to my headache. The registration person came out to the waiting area and told me that she had measured Victorina's head, it wasn't abnormal so we could go. Wait, what?! Deep breath. Pleasant voice. “She has a referral letter from Soroti that she should be seen here. I'm willing to pay the consultation fee. Can she see the physician while we are here anyway?” Even though I'm thinking Dr. Idon'tevenrecognizeaseizure is as helpful as as a box of rocks he is at least another opinion. So back into the office we go. Malnutrition. Final diagnosis. Ummmm.... pleasant voice. “I've seen her siblings, none of them look malnourished or have trouble with developmental milestones. The pediatrician didn't mention malnutrition. If this isn't neurological what do you recommend I do?” Now, here is the only place I'll give him any credit. He turned back to the pt's mother and asked how many other children she had. Only 3 others (this I knew already). Then he asked about other wives that her husband had. She replied one other. And how many children does that wife have? 5. Where in the order of children does this one fall? She is the youngest. The youngest in a house of 12 people. Yeah, it is clearly possible malnutrition just leading to developmental delay. He suggested getting a new pediatrician.

So we loaded back up in the car. On the way through Mbale we bought some bottles of drinking water and some bananas for a very late lunch. And drove home.

The one redeeming part of the day is that impulsively I stopped at Kumi to learn about the CP clinic that Joshua was referred to. It was getting late and I didn't know where it was but for some reason I turned anyway. We found Kumi hospital easily even though it is more than 8km from the main road and even found the specific clinic without trouble. There was one very helpful social worker left there and he answered many of my questions. The clinic has a physiotherapist who sees kids every Tuesday morning and several other staff who help families with activities of daily living. They are taking new clients and the price seems reasonable. I think next week I'll be taking a few others with me in addition to Joshua.