About 2 months ago our 3 year old starting having what we believe is this shooting head pain right around the right side of his ear(kind of behind it) It comes on very sudden and stops him dead in his tracks whether he is eating, playing or even sleeping. He will grab that side and I believe the pain lasts for a minute or two and after he is done crying he likes to be rocked for 10-15minutes and then he is back to normal. These have happened every hour for hours straight or just 2-3 times a day. At first we brought him into the ER twice but got absolutely no answers. They did do a CT scan and that came back fine. We were able to get in to see a ped neuro within 2 weeks but he has absolutely no clue either. We have tried elavil which didn't work and had horrible side effects and now we are using cyproheptadine(generic) for 3 weeks and he still is continuing to have these episodes. Our neuro said if he still continues to have them while on the cypro then we will do further testing to look into a possible seizure disorder so I am waiting for a call back on what the next step is. Have you heard of ANYTHING similar to what my child is experiencing? I just want some kind of answer and I am tired of getting the I don't knows from numerous different dr.s.
It would be important to try and have your son describe what is occurring to him, just to make sure that it is pain and not an abnormal sensation. If this is pain it could represent an intermittent paroxysmal hemicrania, meaning unilateral intermittent head pain. There is a headache type called "icepick" headache which results in severe bursts of stabbing pain. This would be unusual for a typical migraine. It would be reasonable to have an MRI of the brain. This would be unlikely for a seizure disorder, but I cannot exclude it completely. Lastly, disorders of the ear and related sinus should be excluded. A consultation with a pediatric neurology headache specialist would be reasonable. If you are in the area our expert is A David Rothner, MD. Good luck.
My son's neuro just called and they have set him up for an MRI and an EEG next week at the children's hospital but we are still all in the "I have no idea what it could be" stage even though plenty of dr.s have witnessed these episodes.
I have read about similar cases at the World Arnold Chiari Malformation Association and in the research literature. The presentation of this disorder is extremely varied and "mysterious." Also, the American Syringomyelia Alliance Project site is excellent. This has been assumed to be a rare disorder ( except common in kids born with spina bifida), but perhaps this is not the case - especially in kids with spina bifida occulta. Plus, researchers are now noting that there can be a "zero line "Chiari, where the cerebellar tonsils do not herniate through the foramen magum, but there is still compression.
Here are references :
Weinberg JS et al. Headache and Chiari I malformation in the pediatric population. Pediatr Neurosurg.1998 Jul, 29:1
Kesler R. Headache in Chiari malformation: a distinct
clinical entity ? J Am Osteopath Assoc. 1999 Mar, 99:3,
Tubbs RS et al. Analysis of the posterior fossa in children with the Chiari O malformation. Pediatric Neurosurgery. 2001 May;48 (5): 1050-4
Blessings. Don't ever give up. Someone will have the answer.
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