I'm back....lots to tell

[sashasmom]

Hi everyone. Wow it's been a REALLY long time since I've been here lots to update. In march Sasha went for her 5 day VEEG. They took her off meds, and on the 4th day she had a seizure. I woke up really early that morning (5:30) with this feeling that something was going to happen that day. I sat at her bedside and around 8:15 she had her seizure. I did everything I was told to do when it happened, pressed all the buttons, called the nurse etc. Unfortunatly the nurse assigned to her that a.m. knew NOTHING about handeling a child having a seizure! She first called Sasha's name and rubbed her back....as if my child could respond during a bleeping seizure then she stood back and kept saying "she doesn't look like she's having a seizure" (Sasha doesn't convulse she gets stiff and ridged, eyes rolling, etc.)Since I had sent my husband out to shower, I had to drop the siderail of the bed, pull the pillow out from under Sasha, turn her on her side and yell at the nurse to get oxygen because Sasha had stopped breathing. At this point 4 or 5 other nurses had come into the room and my husband returned. One of the other nurses knew that there was an emergancy protocal that her dr wanted followed...the new nurse had no idea about this or about the meds that were supposed to be administered. What I witnessed was 5 minutes of her seizure. The VEEG picked up that it had started 5 minutes prior to being visual. Since I had to do everything to help Sasha, I wasn't able to beat the living cr#p out of the nurse who stood back and did nothing to help my child. That being said I informed the neuro of the incedent and I don't think that nurse will be assigned to his patients anymore. So what did we learn from the VEEG? The seizures are starting from the occipital part of her brain and spreading everywhere. They also think that she might have a form of epilepsy called "Panayotopoulos" so there's a chance that she might outgrow it. (fingers crossed) Since we got home she has had 3 more seizures,(1 while I was driving, 2 while at home) with the last one only lasting a few seconds. She is now on Lamictal and doing better.
After that I had some health issues of my own, but am back on my feet & back to chasing my VERY active 3 1/2 yr old.
Sasha has informed me that she would like a "High School Musical" birthday party.(august) We have also found a preschool that has no issues with the fact that Sasha has epilepsy. To quote the director " teach us what we have to do to help Sasha and we will" She starts end of aug.

 

[Bernard]

Hi everyone. Wow it's been a REALLY long time since I've been here ...

Great to see you again!

... Unfortunatly the nurse assigned to her that a.m. knew NOTHING about handeling a child having a seizure! She first called Sasha's name and rubbed her back....as if my child could respond during a bleeping seizure then she stood back and kept saying "she doesn't look like she's having a seizure" ...

It was the same with the people at the ER when Stacy went status. She was having complex partials that manifested as her dilating her eyes and staring unfixed into space before the eyes started fluttering. She woudl stop breathing and sometimes turn her head to the left (but not always). None of the nurses there could recognize them as seizures. Some tried talking real loud or putting their hand on her as if it would snap her out of it. I know they meant well, but it was disconcerting to see.

... So what did we learn from the VEEG? The seizures are starting from the occipital part of her brain and spreading everywhere. They also think that she might have a form of epilepsy called "Panayotopoulos" so there's a chance that she might outgrow it. (fingers crossed)

Well, it's good that they were able to get a good reading on the seizure activity and narrow down the problem.

... We have also found a preschool that has no issues with the fact that Sasha has epilepsy. To quote the director " teach us what we have to do to help Sasha and we will" She starts end of aug.

:mrt: :clap:

 

[RobinN]

Welcome back, glad to hear that you are finding some answers.
All the best to Sasha.

 

[stilldancing_98]

I am so glad that you are back. I understand those veegs. I had a nurse do that with my son before. I wanted to scream at her. I have had a million myself, well close enough, but I just stood back. Congrats on the school. I am always working on that. Teresa

 

[Dutch mom]

Hello Sasha's mom,

They also think that she might have a form of epilepsy called "Panayotopoulos" so there's a chance that she might outgrow it. (fingers crossed)

On our Dutch forum we have a member who has a daughter with Panayiotopoulos syndrome. (You haved to add an i to find more information.) I found this link in our archives.

http://pediatrics.aappublications.org/cgi/content/full/peds.2006-0623v1

These publications are mentioned:

[FONT=verdana,arial,helvetica][SIZE=-1]C. P. Panayiotopoulos, M. Michael, S. Sanders, T. Valeta, and M. Koutroumanidis[/SIZE][/FONT]
[SIZE=-1][FONT=verdana,arial,helvetica]Benign childhood focal epilepsies: assessment of established and newly recognized syndromes[/FONT][/SIZE]
[SIZE=-1][FONT=verdana,arial,helvetica]Brain, September 1, 2008; 131(9): 2264 - 2286. [/FONT][/SIZE]
[SIZE=-1][FONT=verdana,arial,helvetica][Abstract] [Full Text] [PDF] [/FONT][/SIZE]


J. G. Millichap and V. Tolia
Panayiotopoulos Syndrome: A Benign Autonomic Epilepsy
AAP Grand Rounds, December 1, 2006; 16(6): 69 - 70.
[Full Text] [PDF]

 

[Bernard]

Thanks for the link DM. Good info.

http://pediatrics.aappublications.org/cgi/content/full/peds.2006-0623v1

CLINICAL FEATURES.: Autonomic epileptic seizures and autonomic status epilepticus are the cardinal manifestations of Panayiotopoulos syndrome. Autonomic seizures in Panayiotopoulos syndrome consist of episodes of disturbed autonomic function with emesis as the predominant symptom. Other autonomic manifestations include pallor (or, less often, flushing or cyanosis), mydriasis (or, less often, miosis), cardiorespiratory and thermoregulatory alterations, incontinence of urine and/or feces, hypersalivation, and modifications of intestinal motility. In approximately one fifth of the seizures the child becomes unresponsive and flaccid (ictal syncope) before or often without convulsions. Cardiorespiratory arrest is exceptional. More-conventional seizure symptoms often appear after the onset of autonomic manifestations. The child, who was initially fully conscious, becomes confused and unresponsive. Eyes turn to one side or gaze widely open. Only half of the seizures end with brief hemiconvulsions or generalized convulsions. Convulsive status epilepticus is extremely rare. Autonomic symptoms may be the only features of the seizures. Half of the seizures in Panayiotopoulos syndrome last for >30 minutes, thus constituting autonomic status epilepticus, which is the more common nonconvulsive status epilepticus in normal children. Two thirds of seizures occur during sleep.

EPIDEMIOLOGY.: Panayiotopoulos syndrome probably affects 13% of children aged 3 to 6 years who have had 1 or more afebrile seizures and 6% of such children in the 1- to 15-year age group.

...

PROGNOSIS.: Panayiotopoulos syndrome is remarkably benign in terms of seizure frequency and evolution. Autonomic status epilepticus imparts no residual neurologic deficit. The risk of epilepsy in adult life seems to be no higher than in the general population. However, autonomic seizures are potentially life-threatening in the rare context of cardiorespiratory arrest, an area in which additional study is required.