Opsoclonus polymyoclonus or opsoclonus myoclonus

[chronic nocturnal headaches]

Hi, Is anyone in here familiar with this area of neurology. My husband and I are working with a pediatrician to try and solve our sons (2years six months of age)night waking and pain "sore head". When he settles at night he often has his hands out in front of him moving them, like he's in a trance. Often his eyes move from side to side (the very corners of his eyes. Brain CT came back clear. He has no major issues during the day, except that he's tired from not sleeping well. Recently he had about 10 secondes where he was lying in my arems and blinked very rapidly, he cannot do this when I ask him to. He has had a previous seeizure several months ago whic the GP put doen to a sudden temp spike. He had been exceedingly lethargic all day. A dead weight just after the seizure. He had no apparent temperature that we could feel.
This is something I have come across in searching. Seems to be something that might be possible but have found no research to explain how it might ihncur headaches. Any ideas?

[marra]

he needs an eeg to rule out epilepsy i thnk or could just be night terrors ,however terrors tend to be un noticed by the child and they do not respond as they are asleep and i dont think he would have pain with that either .good luck x x

[Demiguise]

I've heard of this but just vaguely. Besides a brain mri, was a
spine mri also done? Small neuroblastomas have been over-looked
w/ this condition (sm. tumors causing compression). You mentioned GP. I assume he's seen a specialist in pediatric- neurology? If you are in US, in Sept. '06 a trial was started
by a team at the Children's Hospital of Pittsburg, PA.  They
are still taking children 18 mo+. Not sure if it is only for
ones w/ tumor Dx'd. It's gov't funded. It's often possible for
a pediatrician to do a consult of faxed history to study & they
may do a long distance consult (share info) of data they are
already aware of. Ask Dr. or I can get you site that gives 3
Dr's names wk'g on project. The eye thing is a reflex that is
generally triggered. That's why he can't do it for you. He may
have normal sleep-waking & walking & then that may be triggering
something in the medulla area. I'm sure you've been searching
everywhere. The hospital may be something to talk abt w/ Doc?
Maybe a 2nd opinion read on the mri? I'm sure there are other
children's hospitals you can also call to find a specialist.
Good luck to you & a hug to the little guy.

[chronic nocturnal headaches]

Hi. We are based in New Zealand and have one hospital where they should have a peds neurologist. However because they are so few and far between it is nigh on impossible to get a referral. W have to work with the pediatrician who speaks to a general neurologist first. Every appointment is 6 weeks apart and testing is very slow with test result reading even slower. Frustrating but at least something is happening. He has not had an MRI at all. He had a head CT only. MRI is a long way down the list apparently. We have asked on more than one occassion. In researching over the past few days I cam across a term peduncular hallucinations which seems to identify his night time hand thing (which appears to relate directly to nights when he wakes in pain) except that it seems to be related to brain tumours. While none have shown in the CT. We are going to send this tid bit of information to the ped. specialist tomorrow so he can investigate. Would be very intereted in contacting the doctors you mentioned. Have contacted someone at the actual organistaion of this specific syndrome. Who knows if we are barking up the wrong tree. We have to emliminate all possibilities to find what it is. Every avenue explored is another one off the list at least. Up till now we have not explored the hand movements. We thought it was normal until we mentioned it on emergency admission a few weeks ago. Then someone mentioned searching it. All the literature I have come across says it is rare and very specific so here's hoping that it will find us some answers. Thanks again.