Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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Must do better
- Jarlath McAloon (10 May 2003)
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Not just children
- Alison E Payne (23 May 2003)
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More doctors need to be aware of sleep myoclonus to avoid unnecessary medications
- Cristi R Ramey (20 July 2004)
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Re: More doctors need to be aware of sleep myoclonus to avoid unnecessary medications
- John F. Bolton (23 July 2004)
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A parents story -
- Therese M Ademola (18 July 2007)
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Jarlath McAloon, consultant paediatrician BT41 2LL
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Egger and colleagues report that almost half of the fifteen infants with benign sleep myoclonus had received anticonvulsant treatment,with two having received multiple treatment. The paper does not specify the status of the clinicians who initiated these treatments. As a general paediatrician in a locality with a catchment of approximately 3,000 births/ annum I have experience of seeing approximately two or three of these babies per year. In no cases has it been judged necessary to give a trial of anticonvulsant. I am surprised at the high rate of treatment in Egger's group and would be disappointed to learn that a similar level of lack awareness of this not uncommon diagnosis existed among consultant paediatricians in the UK. If so, then this paper would have an important local lesson. Competing interests: None declared |
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Alison E Payne, GP, Paraparaumu New Zealand
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A few years ago, while still living in the UK, my (then 32year old)very fit heatlhy husband started to have nocturnal partial seizures (or so it seemed). He was extensively and exhaustively investigated, which was very reassuring. He was told he had epilepsy, put on carbamazepine, and had to leave his job as a result as his work as an outreach arts administrator involved driving around East Lancashire to various venues. On our second and final visit to the neurologist he was told "there is nothing wrong with you". I took issue with this and asked why in that case he was on antiepileptic drugs, had been told to revoke his driving licence, and had been told he had epilepsy. Eventually we were reduced to the degrading situation of borrowing a video to tape these episodes, we felt so much like noone believed us. On watching the recordings, he was clearly experiencing episodes of paroxysmal nocturnal myoclonus - which I later discovered as an entity in the small print in big fat textbooks in the postgraduate centre. To cut a long story short, I concluded the problem was stress related - or more accurately, bullying at work (in a very subtle, unobtrusive way) - the bullier (a colleague) took a dislike to him when he made a polite request of the boss to work elsewhere as the open plan office which was full of smokers was causing him some discomfort. The only good thing that came out of all of this that while waiting for his CT scan he saw a recruitment notice for radiiographers, so when he left his job he returned to study, is now a radiographer, and finds his experience as a patient in the health service helps him to provide a huge amount of emphathy for his patients... I have learnt from this that stress can cause all sorts of symptoms - and that when specialists say there is nothing wrong with the patient, what they mean is they don't know what is wrong - and frequently have not looked beyond the physical in their considerations. Competing interests: None declared |
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Cristi R Ramey, homemaker Chesapeake Ohio, 45669
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My son, now 3 years old had this when he was born. The hospital he was in located in Huntington West Virginia took him straight to the NICU telling me he was having seizures. They asked me several questions about my pregnancy (I had an uncomplicated pregnancy and dont take any drugs other than the occasional tylenol.) After speaking with me, they did a spinal, (asking for my consent after they had already given it to him) ,put him on medications to stop seizures, did an EKG. They had him so medicated that he was lathargic. Then released him 3 days later with an appointment with a neurology specialists, giving me no reason for his behavior. Once I got home and evaluated him myself and did a little research I came to the conclusion myself that he had benign sleep myoclonus. These sleep jerks slowly stopped and came to a complete halt when he was about 2 months old. It frustrates me to know he was given unnecessary medicine. I often wonder what kind if any of effect those medications could have had on him. More doctors need to be aware of this and this web site is a great start. Thanks for the information. Cristi Competing interests: None declared |
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John F. Bolton, Clinical Fellow in Urology Bristol Royal Infirmary, BS2 8HW
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Dear Editor, I agree with the correspondent's comments regarding the widespread ignorance amongst medical professionals of benign myoclonus in infants. The following case report illustrates this, and that there are those who understand the breadth of human normality better than we. My son was born a year ago, and I noted on the 5th day he was "fitting" in his sleep. These were apparently tonic-clonic seizures affecting all four limbs, but only occurred in his sleep, and he had no obvious post-ictal drowsiness. Alarmed, I showed my fitting child to the midwife, who "had never seen that before", and suggested a visit to the paediatric A+E. My wife now in tears while my otherwise perfect child slept, I phoned the paediatric registrar on call, who suggested I check my boy's blood glucose (it was normal). He then said it could be "Fifth-Day Fits" - a clinical entity I was previously unaware of. The day being my boy's fifth of independent life, I was concerned that there was a condition whose name even timed perfectly with my observations. He suggested we bring him in. I was about to load him and my distressed wife into the car when my father-in-law phoned. His response to our panic was, "Don't worry, your wife did that when she was a baby." Temporarily disregarding the midwife and the paediatric registrar, we showed our child to my mother-in-law. She confirmed an identical sign in my wife's infancy, when my mother-in-law was told it was normal (by her midwives in Holland - where my wife was born, at home). Reassured, we never went to the hospital, and my son stopped "fitting" in his sleep by three months without any intervention. My boy, now turning one, narrowly avoided a diagnosis of epilepsy, and any subsequent medication. This was not due to the clinical acumen of the midwife or the paediatrician (although he didn't actually see my son), but due to the sagacity of my Dutch mother-in-law. Competing interests: None declared |
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Therese M Ademola, physiotherapist/parent BN21 2UD
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Both my sons had sleep myoclonus as new borns. Our first son was wrongly treated as diagnosed an epileptic seizure - and given phenobarbitone. Unfortuanately this caused him to desaturate and have apneas, he ad bradycardic episodes and he was unable to maintain a normal temperature and was drowsy. He spent 3 weeks in intensive care before he was finally diagnosed as sleep myoclonus and taken off the drugs, and started to have a normal respiratory function. In the mean time we had several possible diagnosis including that of a stroke. I was from minute one certain my son did not have epilepsy as I could wake him from his "seizure" however I was not really taken seriously in the start. I asked several times if it would be an idea to take him off the drugs as I was certain the drugs mad him ill. Do doctors treat a little too early? rather then await an EKG to diagnose a seizure? I feel if a little more time and care had been taken in the first hours in SCBU (including listening to my full explanation of the jerks my child had) we might not have had to be taken through the 3 very traumatic weeks of having a very very sick child in intensive care.We thought we were loosig him on several occations. Due to our experiences with our first son, we knew what to expect with our second son, and he was home with us, untreated and had fairly strong and long lasting episodes of myoclonic jerks, he grew out of this at the age of three months. I welcome the information here for doctors, and would be happy to be contacted should someone ever need the parents story in a lecture or information, especially since I have seen both stories, the wrongly diagnosed and the correct diagnosed story. Thank you, Therese Ademola Competing interests: None declared |
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