When I meet a patient with some form of altered mental status, I always ask if this is normal for this patient. Sometimes the answer comes from a family member, sometimes from paperwork given to me by a nurse. Sometimes a bystander tells me the patient was not like this only moments before.
But, what happens when the patient's normal mental status is not "normal"? Would you notice an elderly dementia patient with a UTI? A autistic patient with a stroke? A mentally retarded patient with a blood sugar of 40? Or, what recently happened to someone I care for, a patient with a history of Cerebral Palsy, severe kidney infection and now suffering from Guillain-Barre Syndrome?
My sister has Cerebral Palsy
. My sister has improved greatly during the 29 years of her life. If you met her, you may notice something, but may not know quite what. Her speech pattern is something similar to many people who've had a couple beers. Slightly slow, but still very understandable. Also, she walks at one speed. She doesn't run very well and don't ask her to jump up and down on one foot. But, she walks just fine and wouldn't notice anything unless she was on a large slippery surface where she had to worry about loosing her balance. And to be totally clear, she has no mental deficits. She was a B/C student in school like many people I have known. She did well in areas she enjoyed and not as well in those subjects she did not.
On November 22, my sister gave birth to her first child...a lovely baby boy. No complications that I heard of. They were sent home as normal.
Last week Wednesday/Thursday, my sister was running a fever and feeling pretty poorly. She likely had some abdominal pain, but chalked it up to recovering from her first delivery. She called her doctor's office and they recommended taking some Tylenol and calling them if she does not get better in a day or so. Saturday, the doctor's office is closed and my sister takes a turn for the worse. Her husband takes her into the hospital's emergency room in the early hours of Sunday. My sister cannot walk. She's barely conscious. Her words a slurred. She is responsive to Verbal stimuli, no longer fully Alert & Oriented. My sister's home thermometer read 102F. The hospital's read 104F.
The hospital begins to treat her for an infection they eventually determine to be a extremely bad kidney infection. Describing the infection as severe would not be over-stating the situation. She would need to be evaluated for permanent kidney damage. As the infection is beaten back, her mental status improves. Yet, she is still not talking. Her legs are described as being "like noodles." She also has very slurred speech and hard to understand. Occasionally, she has phrases that are clear as normal, like "I love my baby." She appears to be suffering from depression and is barely eating the chicken-broth-like soup the hospital is giving her.
The hospital is considering discharging her with some antibiotics for the infection, a done deal. She is still not walking or talking. The family is telling everyone this is not normal for her. Yet, everyday a different doctor reviews her chart, see she has CP and when evaluating the patient sees no sign of anything outside the range of CP. Yet, the family still seems to be quite upset. Yet, every time the family explains this is not normal, the nurse are doctor is like "Oh! I saw she had CP. This is not normal for her?" "No! We have been telling EVERYONE this ALL ALONG." Still, nothing is being done other than the antibiotic.
Luckily, my sister's OB/GYN hears of my sister's plight. As with any woman who has just had a baby, she has recently seen her OB/GYN more often than any other doctor. The OB doctor immediately notices the difference in my sister yet cannot do anything for my sister herself. Thank God, though she did commit to contacting A LOT of "the right" people. The next day, my sister was having an MRI, a Neurologist was seeing her and they were doing further tests.
Today, my sister has been diagnosed with Guillain-Barre Syndrome
. Seems that most occurrences of this syndrome are proceeded with an infection of some-sort. It's a rare syndrome, affecting one to two people per 100,000. The exact subtype is even more rare. Miller Fisher Syndrome only effect about 5% of those with GBS.
A description of Miller Fisher Syndrome:
"It is characterized by opthalmoplegia (eye muscle weakness), areflexia (absence of reflexes), ataxia (the inability to coordinate voluntary muscular movements such as walking), and, in some cases, facial and bulbar palsy (affecting vital functions, like breathing, and swallowing or speech)."
Today they began treatment. Family has been told that drastic improvement could be seen in a few days. But, if no improvement by then, it could be months... From what I read, it could be even more. Lots of medication and lots of physical therapy is in my sister's future.
It's baby's first Christmas. My sister should be spending this early time bonding with her child at home. Yet, now she is suffering from pain, near paralysis, and depression in a hospital bed. I wonder what today would be like if they could have started treating her a few days ago rather than just now.
Why haven't more healthcare workers realized they need to ask not what is normal, but what is normal for this patient? Many see a history of a disability and just assume that this patient is not normal. That this person is normally asleep, not walking, not talking. All of us need to remember to listen and to ask questions. Charts can be misleading. Treat the patient not the chart and remember, the family and the patient have a lot more history in dealing with their disability than any doctor who does not have the disease themselves.
In an emergency situation, family members will likely and understandably be anxious from the situation. So they might not give you all of the history without being prompted. If a patient's family member tells you that this is not normal, even when normal for this patient might not be "normal" for you and me...LISTEN. And, please, make sure to pass this observation on when you give your report and document your care.