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Saturday, October 1, 2016
My now 18 month old daughter has had multiple recurrent episodes of torticollis firs noted at 2 months of age. Occurs roughly 3 times a month and lasts anywhere from 4 hours to 3 days. During theses episodes as an infant her left ear would be locked down near to her shoulder with her body almost in a "C" shape. Now as shes gotten old roughly 50% of the time these episodes are also accompanied with vomitting, irritability and sleepyness. My pediatrician said, "I dont know what to tell you other then sometimes she gets a kink in her neck, mabey she sleeps wrong". This is more then a occasional "kink", and it occurs without predictability or warning. Can be sitting straight in the highchair eating, and a second later she is stuck with her left ear to her shoulder . . . What conditions can this be associated with and is it generally reccurrent with such frequency?
There are two most likely causes. One is seizure activity and the other is called benign paroxysmal torticollis of infancy. The latter condition, shortened to BPTI for convenience, is by far more likely. It predominates among young female infants and your description of the attacks is the textbook description of BPTI. Happily it has no long term developmental problems associated with it, although half or more of infants with the condition show some gross motor delay (delay in using large muscles for movement such as crawling, sitting, and standing) as infants. Once the attacks cease, the child catches up quickly. It is important to bear in mind that there is little relationship between mental development and gross motor development.
The condition typically begins in infancy and resolves spontaneously within the first 5 years of life. The average age is between 2 1/2 and 3 years of age. It may be associated with infantile migraine headaches, hence to vomiting and nausea. Not surprisingly, the baby has irritability and feels better after sleeping as is true for older migraine sufferers. While infantile migraine may not be diagnosed in all children with BPTI, it is common for these children to develop migraines later in childhood. Migraine of infancy should be seriously considered if you and/or her father have a history of migraine headaches.
Pediatric neurology is the best pediatric specialty to advise you about your daughter's symptoms and their management. They may well want to rule out any more serious source of the behavior such as a brain tumor provoking seizures (likely with a CAT scan or MRI) or seizure activity in its own right without a tumor using an EEG. Be aware that unless a seizure happens at the time an EEG is done, the EEG will be normal. This is why infants and children are often hospitalized overnight with continuous EEG (just wires stuck over the head and chest, which looks awful but is not at all painful or harmful). The doctor hopes that over a period of time, if seizures are present, they will show up on the EEG since their incidence is more common with shifts between sleep and wake states.
There is a fairly current article published in Journal of Child Neurology, 2009, volume 24, number 2, pages 155-160 by Rosman, Douglass, Sharif, and Paolini titled The neurology of benign paroxysmal torticollis of infancy: Report of 10 new cases and review of literature. I think you will find it very helpful.
Some specialists recommend managing this condition with anticonvulsant therapy. Anticonvulsants are now used fairly widely in managing migraines as well as seizures. Be aware that anticonvulsants usually do impair learning by impairing alertness, attention, and brain function. Since this is a benign condition that will resolve in time, you may want to ask about a range of possible therapies in addition to anticonvulsants if these are suggested. Be careful about anything herbal or other alternative compounds since very few, if any of these products, have been tested in children let alone infants. Infants as you may already know have immature liver and kidney function, the main ways in which our bodies process medications. You want the most benefit for your baby with the fewest negative effects.
I hope this information proves helpful and I encourage you to keep on asking questions. Good doctors are always willing to take the time to thoroughly explain health problems and treatment options.
Mary M Gottesman, PhD, RN, CPNP, FAAN
Professor of Clinical Nursing
College of Nursing
The Ohio State University