my email adrress is ***@**** my son will be 7 next month and i have been going thru the same thing for 3 years now please contact me.
I will pray for you and your child.
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
14-8
Kesler R. Headache in Chiari malformation: a distinct
clinical entity ? J Am Osteopath Assoc. 1999 Mar, 99:3,
153-6
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.
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.
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.