Saturday, October 12, 2013

How Measles Encephalitis Harmed Harriet


Harriet as a young girl. Picture provided courtesy of Harriet.

Harriet was born in August 1965, by far the youngest of six children: her next older sister was 8 years older. The family did not have much time to just enjoy the new baby. In December 1965, the family was headed to a Christmas concert, baby Harriet cradled in her mother’s arms (pre-carseat days). Their plans changed when the baby started seizing. The family rushed immediately to the Emergency Room. The hospital intake form had “measles?” written on it next to the baby’s vitals and symptoms (“seizures”). During the next few weeks that Harriet spent at the hospital, the diagnosis was confirmed: measles that led to encephalitis. Harriet’s condition was serious: her family did not know if she would live or die. The hospital told them, explains Harriet, “that even if I did live, I would be so severely mentally retarded that they should put me in a home.”
Harriet survived, intelligent and articulate. She did, however, suffer lifelong damage. She says: “I know I have scar tissue on my brain because when I was nine or ten I was taken for a CaT scan, at that time it was a brand new expensive machine, it was so exciting and I was to be one of the first ever to use it and I moved. So we I had to do it again. The neurologist told my mother about lesions on my brain. My sister remembers it described as shadows on my brain.”
The cost to her was physical, cognitive and social.

A Childhood Clouded by Risk:
One of the costs of the encephalitis was uncontrolled status (epilepticus) seizures, meaning one seizure after another after another for more than an hour (a potential consequence of viral encephalitis). This meant Harriet was repeatedly hospitalized. It also meant she needed extra protection against disease. To protect her, she was kept at home, not sent to daycare, and her parents had to choose a caretaker who took no other children (except for Harriet and her own children). Childhood seizures often resolve at age 6 or 7 years so her schooling was delayed.  Harriet did not go to preschool or kindergarten but did enter school for Grade 1. While her parents did not completely isolate her, wanting her to have a normal life, she was allowed to play with only one or two kids at a time, and her parents made sure the kids she played with were not sick. Her parents worried constantly, unsure their youngest will survive her childhood.
Harriet missed 28 days of her first grade, and had two or three hospitalizations that year, failing first grade. Two events stand out in her memory:  “I was left in my sister’s care one time and when she came into check on me I was not moving.  She was screaming and crying ‘I killed her, I killed her.  She’s dead.  Mom and Dad are going to kill me.’  I must have been having an absence seizure.  One of the bonuses of measles encephalitis is tormenting your older sisters.”
In another event, “two of my sisters took me for a treat to McDonalds.  This was not like it is now when people eat fast food regularly: this was a once in a year special occasion.  I must have said I felt tired and this set off the panic.  I was grabbed and rushed out of there to the hospital emergency room and one of my sisters was yelling that I was about to die.  I was fine and I am still pissed off (a little) about leaving my special treat.” Harriet’s sisters believed that fatigue was an indication a seizure is about to arrive. That was not the case: fatigue was a separate and additional price of the encephalitis.

When Harriet was 7, her medication was changed. She is not sure if it was the change of medication or just growing up, but she never had another seizure as a child. The seizures returned in her mid-twenties. Harriet says: “I was hooking up the TV. My daughter heard a strangled cry then a loud thump and ran down the stairs and saw me seizing. My daughter and her friend called 911 and she said, ‘my mother’s in shock!’ The operator, trying to understand her, asked: ‘she’s been shot?’ And she said ‘no, she was shocked. She was hooking up the TV and she was shocked.’ And the operator goes, ‘oh, she was electrocuted?’ That’s too big of a word – she was only nine. Luckily it was just a simple seizure, not like when I was a child. It aggravates me when other parents describe their child’s simple seizure as their worst nightmare, I know it looks scary, but if a couple of nine year olds could handle it then other people can as well.” Harriet’s neurologist was not concerned either despite Harriet’s history. Harriet would have two more seizures before it was decided to use medication.



Harriet and her daughter as a baby. Picture provided courtesy of Harriet.

Physical Price:
The physical consequences of the encephalitis range from unpleasant to life-threatening, brought here in no particular order.
Harriet describes a variety (1001 types) of migraines that affect her. For brevity, I will only mention a few. She has the classic, painful migraines, various optical migraines, and bizarre neurological migraines. In one type of optical migraine words cannot be recognized as such and individual letters act like pixels creating a picture. 
The most severe migraines she has leave her completely unable to respond. She says “I don’t know my own name, I can’t do simple tasks that I’ve done before, and at the most extreme I lose postural control and I slump over and freeze” (though she has never actually fallen).  These episodes leave her completely helpless.

She has hyperaccusis, a situation where “your brain amplifies ordinary sounds, I hear my hair cracking.” “You can’t sleep because the pillow makes too much noise. I hear the wires in the wall.” Earplugs don’t help, because you would hear the sound of the earplug. 

In addition, she has both high and low blood pressure. She explains that although most people worry about high blood pressure, low blood pressure can cause the heart not to beat enough and “you can’t get enough blood flow.” So Harriet has to carefully monitor her blood pressure.
She doesn’t handle heat well, which she explains is common among those that suffer brain injury, but in her case, it’s made worse because she does not sweat properly (not because of dehydration) and she cannot always properly sense temperature.

She suffers from non-recoverable fatigue, which she describes as “not brought about by exertion, and not curable by rest. It’s brought on by doing your usual routine. Though I do find that one of the most common triggers is decision-making, going shopping. It’s a severe fatigue, and you can’t rest your way out of it like normal fatigue, and that’s probably one of the most debilitating things.” That is one of the reasons she is unable to work.

Cognitive Impairment and its Social Costs:  
A number of cognitive problems make social interaction much harder for Harriet than for most people.
Harriet is unable to recognize faces. This caused problems for her throughout life. She says, “I grew up in a small town where everybody knew everybody, and I didn’t know a soul. I have to depend on people recognizing me. They would think I was stuck up because I didn’t acknowledge them on the street, but I didn’t know who they were.”
Even today, “if you change your hair I don’t know who you are. If you stop me in the grocery store and I’m used to seeing you in the office I don’t know who you are. Even my daughter – it’s kind of funny, but I can recognize the way she walks. I have to do a great deal of thinking so I can recognize her, but basically I recognize her clothes, if she changes her hair and gets news clothes I don’t know who she is, and I have to depend of how she walks, because I can recognize how she walks.  But you show me a picture of her face and I might not recognize her.”
The combination of lack of facial recognition and delayed cognition, which she also has, leaves her vulnerable to manipulation: “when someone is being nice to me I can’t sense if someone is untrustworthy.” On the other hand, she may say things that are not socially appropriate (“the blurts”). Or be accused of manipulation because of responding directly to question (“terminal honesty”)". 

She has memory problems – problems with word recall and with remembering appointments and what to do. Together with delayed cognition, this too makes social interaction and daily life complex:  “the only times I’m able to respond during a conversation is to use routine building. You have to prepare for every little thing. Even for normal things in your daily life you have to build routines into them.” Luckily, “…technology has caught up and for rare events you can program them into your smart phone, and it would beep and warn you that it’s coming up. And that’s because otherwise it just doesn’t exist.”

Finally, Harriet suffers from an exaggerated startle reflex and a parasympathetic nervous system disorder. This means that her body overreacts to situations. Harriet gives an example of her computer crashing, and her reaction was to run downstairs and find herself sitting in a chair, her body vibrating with rage but calm in her head. She explains how it can exacerbate social interactions: “if I complain at a store, if there’s a sensitive person there, they will recognize all the non-verbal signals that my body is giving off. I might be a little frustrated but my body overreacts, and I’m giving out signals of rage. They’re reading this rage, and I can’t get them to calm them down to listen to what I’m actually saying.”

Harriet lived with the after effects of the measles encephalitis all her life. Measles leads to encephalitis in about one in athousand cases. The MMR vaccine, in contrast, had a reported incidence of one in a million or much less, and causation is in doubt.

Harriet says: “Because of the contrived controversy about the MMR, I’ve been trying to explain to people. Because vaccines are so effective, people no longer know what measles looked like. I consider myself on the mild side of the severe consequences of measles, especially being four months old - I was most likely to die in that age. I was in absolute terror when I first learned about SSPE [an incurable and fatal complication of measles; see also here, here and here], because I was trying to figure out why all these changes were happening to me. It was 10 minutes of absolute terror reading about it, and then it was, okay, this is not it, it would have killed me years ago, this is something else. But that was terrifying.” Everytime I reach a different life stage(school age, puberty, mid-twenties, and now perimenopause) I have different cluster of symptoms.  My neurologist sent me for a MRI  because of the changes and “weird” brainwaves.  She concludes: “I’m trying to speak out. People just don’t know that this is the real risk. It terrorized my family for years.”

Acknowledgments: Thank you to Harriet for sharing her story and working with me on the writing, to Alice Warning Wasney for reading my draft, and to Dr. Nathan Boonstra for his comments and help in understanding the medical issues. 

4 comments:

  1. Wow. I know it's not something that she had any control over, but what an amazing woman. I get the feeling from reading this, that she's determined to live her life to the fullest, despite her various issues that she's dealing with. She's coming across as a very, very strong, independent woman, and an inspiration to so many. xxxx I would just love to meet her one day. :)

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  2. She is an unusual person, I think. I passed the message on.

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  3. Good stuff..those tips really work out..looking forward to learn more from you..keep posting.

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