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Hi edb, welcome to our forum. You have come to the best forum for support and answers. This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

I was 6 years old when I was diagnosed with epilepsy. My seizures were not yet controlled by medicines. My parents had me live a normal life. I went to school, which I recommend. She can make friends there. Talk to the teacher first and let her know about it.

The more you learn, the less scary it becomes.
 
Hi edb.
My daughter was on Valproate for a year following 3 seizure episodes at almost 2 month apart (which would all fall under the category of status) and taken off exactly after a year of being seizure free. I hope it will control your daughter's absences, I know it is the first option in treating children. Keeping a diary as well as the fact that you know of a clear trigger is very important.

I know for me was impossible to accept that when a child is previously healthy, something like this can simply happen. If you don't suspect your daughter had this before, and just went overlooked, you can try to find a reason why this would happen now, any change in her life. I understand you looked into celiac and do not see any resemblance, I would still encourage you to read more on the relation between gluten and seizures. While waiting for further testing, you can try a gluten and diary free diet for your daughter, even if you don't suspect or were not told by your doctor of such a reason. It can do no harm, but only good. The same with vitamins and mineral supliments. Give her lots of good fats, avocados, salmon, every day. This site provides excellent posts and links on the value of diet.

I know that it was difficult for me to do this changes, mostly because of lack of encouragement and belief from friends/doctors, everybody seems to be surprised that you consider yourself 'smarter' than the doctors. A second time I know I would not even question a treatment route that does not involve medication but tries to restore the health of the entire body.
You being here, asking for advice, only proves that you believe there are things you can control. I hope your daughter will become seizure free in no time.
 
Thank you all for your input!!! I really appreciate it!
We had a rough day today! Two episodes of staring and vomiting after 1pm (they were about 5 min each, three hours apart). Again there were no rolling eyes, no twitching, no jerking, no convulsions...just staring and vomiting. The second time my daughter was somewhat conscious; I asked her if she sees /hears me and she nodded yes. But she would not talk. After recovering she knew she was vomiting.
Yesterday we couldn’t see a single 2 sec absence and I was really happy thinking this day will be absence free too, since we passed the morning with no incidents. It wasn’t to be I guess...
I am puzzled; I don’t know what to think anymore...
 
Thank you Robin for everything!!!
I have been reading about it this past week and more yesterday; I even found a scientific paper unfortunately kind of old ( 1988 ) but describing basically what we are experiencing now...
We had another episode at 10pm yesterday, same as the other two and everything matches with abdominal epilepsy. If it's this, the prognosis is excellent (well, I am citing this old paper here so maybe I should be more careful with putting my hopes so high).
I am not sure what to do with the info though...I'll try to contact her neurologist just to see what she thinks I guess.
I really hope this day will be good!

Have a great week-end everybody!!!


EDIT:
Well, I have to edit this message and say that vomiting in abdominal epilepsy manifests somehow in cycles and is very severe .... the paper I read talks about vomiting as main manifestation of children's seizures (ictal vomiting) along with staring, with or without convulsions, with or withous consciousness. Google-ing the ictal vomiting I found out about the Panayitopoulos syndrome (that's the name of the author of "my" paper) which I understand is a rare, newly recognized syndrome in childhood epilepsies. So, I am still searching, who knows what else is there...I still have to find out if my daughter's brief absences are related to this syndrome, she had the last one two days ago.

I feel like keeping you posted just in case anyone had similar experiences or has similar problems to sort out, sorry if it's too much!
 
Last edited:
Hello again,

Well, we had two days without incidents and I am convinced now that my daughter has the Panayitopoulos syndrome. Has anybody any "experience" with it?

What should I do with this info I don't know...I will make another attempt to talk to her neurologist I guess. It is actually important to do that, her medication might not be the right one... I am wondering if it was a good thing to put my daughter on medication so soon.

The absences just stopped five days ago...is that ever happened to anybody to have "transient" absences (like, for brief periods of time...)?

I'll go with my daughter to school today!
Have a great day!
 
That is very interesting!! I feel like I am going to vomit sometimes with abscence seizures. Has anybody heard of it in older people. I am 67 years old.

What I do is take a 1/4 cup of Pedialyte, otc, and that stops me from vomiting. It is electrolytes. Something we all need to have.

I have twins that have epilepsy. They need to learn and I sent them to school. They graduated from high school. I told the teacher in private about their condition. Have the teacher aware of what can happen, she will cooperate with you and your daughter.
 
Just an update from us...

After reading a pile of papers I am positive that my daughter has Panayiotopouous syndrome. I managed to talk to her neurologist on the phone Monday, she said she has to see occipital spikes in the EEG before giving this diagnosis but the thing is, with PS the symptoms are more important than the EEG (which can show multifocal spikes actually)... anyway, Tuesday I got a phone call from the clinic and we have an appointment next Monday, hopefully this will be sorted out.

I requested (and got) a prescription for Diastat, because from what I read the seizures in PS are long, about half longer than 30 min and going to status epilepticus...our longest one was 15-20min, they say Diastat should be given after 5 minutes (is this the "normal" time for a seizure?).

I was concerned with her medication not being appropriate but I found cases in which Valproate was used for PS although Carbamazepine seems to be the first chosen drug. So we are good here...actually maybe it's better, I found a study saying that Carbamazepine can induce absence and myoclonic seizures in PS patients. I really wish Valproate will work, tomorrow we reach the full dosage prescribed.

Other than that I read a bunch of papers regarding temporal lobe epilepsy because the neurologist said vomiting can occur in TLE. Well, if the seizures would have started in the temporal lobe my daughter should have had auras of funny smells, stomach ache, nausea etc...vomiting should be there at the onset (please let me know if you had other experiences). By my daughter's seizures always start very abruptly with staring (vision-related so occipital location) and vomiting follows after a while. More, she had couple of times a specific deviation of the head and eyes (again pointing to the occipital location) ... anyway, we will see Monday. Maybe someone with TLE can tell me if staring and vomiting are usual manifestations in this type of epilepsy for him/her and in what context are these happening...

Oh, I was describing very brief absences (2 sec) when I started writing here...I think they were just seizures about to happen but that never did continue; my daughter had a longer one (less than a minute though) two days ago that looked a lot like the onset of her "typical" seizures (staring and deviation of the eye and head). Anybody with absences has had that?

There are many other things I could talk about regarding PS, a relative newly recognized benign childhood epilepsy syndrome, so if someone else is ever interested I will be very happy to share the info...the good thing is that, contrary to the long seizures, they say there are no neurologic or other consequences and the remission should occur within few years from the start (I guess it's related to brain maturation/development?).

Other than that, being able to put my finger on something makes me feel better. I am still worried though, I hope my daughter's blood tests and MRI will come out good and that she will be seizure free soon!

Sorry for the long post and have a great day!!!
 
edb...I have left temporal lob epilepsy. My cps that generalize I don't know what happens before they generalize and I lose consciousness...the neuro thinks the time between the aura and the generalization is so quick we can't pick it up or the aura is too subtle? The cp I've had with a recognizeable aura involved a really bad taste prior. I also have simple partials/Auras which are nothing more than smelling weird things and simple partials which are twitches. I'm beginning to think these are myoclonic jerks but who knows...for now the doc said simple partials?

I'm pretty sure there are others on here whose TLE cps start off with staring or eye movement...hopefully they can give you more input :) It sounds like your neuro is woeking with you and that is always a good thing.
 
Thank you Zoofemme for your reply!

I read everything I could about TLE, the seizures should be most of the time short, less than 5 minutes...I don't think this is what my daughter has but we will see Monday.

I also read more about the typical absences and CAE (childhood absence epilepsy)... should be frequent during the day, 4 to 20 seconds long (most of the time 10 seconds) and visual manifestations are cited as an exclusion criteria for this diagnosis. My daughter's are one or two in the morning, very brief (2 sec); when longer they resemble the onset of her type of seizures and she also has these stories about lines and circles ...

I found that visual symptoms are characteristic for the late on-set occipital epilepsy (Gastaut type; PS is the early on-set type of benign childhood occipital epilepsy). Both syndroms have in common the head and eyes deviation...Either my daughter has PS with mild "traits" of Gastaut or she is in the 6% PS group that can exceptionally have the visual symptoms (I only found one paper talking about and giving this percentage so I cannot say for sure that it can happen).

I will ask for a FOS (Fixation-Off Sensitivity/Scotosensitivity) test and a photic stimulation test when she is having the next EEG. She does not appear to be photosensitive but I can think of some signs of FOS (although not sure but I just need to eliminate that possibility).

That's it for now, hope I will come back with certain things next time...

Have a great week-end everybody!
 
5 minutes is usually the "status" marker for those with *err- lack of better word* "regular" length seizures. mine are typically 2-4 minutes long. so yes, after 5 mins would be a good time to administer. but if you know she normally goes longer, you could administer it sooner.
 
Thank you Rae!

The lenghty seizures are a characteristic of PS and none of my daughter's seizures were less than 5 minutes (well, maybe the lenghty absences only).
I got the emergency medicine but I really hope I won't have to use it!!!
 
Sorry edb...I should have said the complex partial part of my seizure before I generalize, not the aura. I don't remember anything with those so if there is an aura, the complex partial part of it...its kind of up in the air. My husband has never picked up on anything either.

Like Rae, my Cps are usually 2-4 min long, my sps are less than a min. I have gone status...in my case it wasn't length of time of seizures but number of seizures in a row and that they wouldn't stop.
 
No problem Zoofemme, you helped me by not mentioning the vomiting (it means it did not happen - so it's not a general thing as opposed to PS where is the main thing); the other things you mentioned are not in my daughter's seizures either so thank you for posting, it always helps!
 
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