Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to review your daughter's medical history and examine her, I can not comment on the diagnosis of abdominal epilepsy, however, I will attempt to answer your questions to the best of my knowledge.
Regarding your question about distinguishing between migraine and seizure, the diagnostic criteria for each differ. The main criteria that establish a diagnosis of abdominal epilepsy include episodes of GI complaints that are unexplained by complete evaluation (which it sounds like your daughter has had), and a sustained abolition of symptoms on anticonvulsant medication (such as lamotrigine). While seizure activity per se is not a diagnostic criteria, many children with abdominal epilepsy will have EEG abnormalities.
One feature that distinguishes abdominal migraine from abdominal epilepsy is that in migraine, the episodes of abdominal pain last for hours (as opposed to a briefer duration of episodes in abdominal seizures) and abdominal migraine is often associated with symptoms such as vomiting and headache. The fact that your daughter has headaches does not imply that she has abdominal migraines, but it is known that patients with abdominal migraine often do go on to develop migraines later on. A family history of migraine is often seen in children with abdominal migraine.
Again while I can not comment on your child's diagnosis, what can be said is the following:
(1) a lack of response to beta blockers and calcium channel blockers does not mean that her episodes are not migrainous, and there are several other medication options if her symptoms are migrainous; medications used successfully in children include amitryptiline, cyproheptatidine, valproic acid (an anti-epileptic used in migraines), and topiramate (an anti-epileptic also used in migraine) and the medications used to abort migraine (imitrex etc.)
(2) the associated symptoms of nausea and vomiting and headache may suggest that her symptoms are migrainous as opposed to epileptic (though vomiting can occur with seizures as well)
(3) abnormal eye movements can occur in patients with migraine, but if these have been documented by EEG to be seizures then seizures they are
(4) migraine disorders and epilepsy sometimes co-exist
Evaluation by a PEDIATRIC neurologist and/or a PEDIATRIC epilepsy specialist may be particularly helpful for your daughter. They might also be able to suggest treatment that might help her during her attacks when she fatigues after travel.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
(1) Regarding abnormal EEGs in patients with abdominal epilepsy, a few points:
-the EEG can be entirely normal during and out of attacks
-when abnormal, the EEG often shows abnormalities that are not epileptiform (i.e. some abnormalities that do not meet the EEG criteria for a seizure), which can occur during and out of an attack
-prolonged monitoring can often not show anything as was the case in your daughter
(2) Diastat is one of the main treatments used for prolonged breakthrough seizures in children
(3) Lamictal has been used in migraine disorder and in some adults it is helpful though there is little research on its use in migraine and what studies that have been done have not shown it to be as effective as other medications
Please see the following website, I'm not sure if you will find it helpful, it describes a migraine variant that involves abdominal pain and vomiting
http://my.clevelandclinic.org/neurological_institute/services/pediatric_neurology/cyclic_vomiting.aspx
Thank you for the feedback. My daughter is being folloowed by a Pediatric Neurologist (unfortunately he does not like to answer questions very much). I was unaware that eyeball moevemnets can also occur in migraine as well as seizure---would be curious as to the mechanism behind them if they are migraine and not seizure related. She has had one 48 hr EEG test that did not show any abnormal activity--when you mentioned that many of these children with abdominal seizure do show activity on EEG is that when they are only having symptoms or can it also show activity when they are symptom free?
My daughter responded immediately to Lamictal and has gone from symptoms every 3 days to occassional break through activity (1 every 1-2 months)---I know she is at the low range of therapeutic when the plasma levels were recently taken. Her neuro had given a rectal syringe of diastat for when she cycles through episodes while traveling but I cant get her to take it---it honestly looks like soemthing you would give to a cow-not a human! Anyway he is unwilling to give her anything oral to break the cycle and wont comment as to why. We travel internationally a fair amount and I would like to have something that I can giver her orally when she cycles through this. I also thought that seizure activity in abdominal epilepsy can cycle for days as well---is that correct? At this point it is hard to know whether this is seizure or migraine-----can Lamictal work for migraine as well? Can imitrex be used in 9 yr olds? Why Diastat? Have you seen that used before? I really don't understand why her doctor refuses anything oral to break the cycle. I know that when we were in Europe ---there were a multitude of possible triggers for migraine as well as seizure including time change, diet, motion of car travel. I have just seen enough occurences when we travel (this last trip she was pretty miserable for 10days with stomach pain, dizzy spells, headache, diarrea etc) that I felt helpless to help her.
Final question----is there a center in the US that is known for this sort of thing in kids? I appreciate the help,
Kimmers4