Petit Mal Seizures - Anyone???

[MommaGinger]

Good Afternoon,

My DD5 had an EEG this morning and we wer told that she is having Petit Mal Seizures (she was having what we thought were eye tics but I guess not). We are going to see her developmental pediatrician on Monday but until then I am in panic mode. I am just looking for some advice or experiences on this. I appreciate any information that anyone would like to share.

Thank you.

 

[Celidh]

I can imagine you are thinking the worst right about now. I have no medical experience and have no idea why your daughter is having seizures but just wanted to put my two cents worth in.

I was diagnosed as having epilepsy at the age of about 8. There was no reason for me to have seizures as far as the doctor was concerned. Nothing had happened, I didn't have a head trauma, wasn't sick, nothing. I had all types of seizures, grand mal, petit mal, and I remember waking up in the wee hours of the morning with my legs going crazy. I must say, it scared the daylights out of me. I don't think it was that long after being diagnosed.

The doctors told mom that they couldn't predict what the outcome would be. My understanding (noting that it my memory is foggy due to my age at the time.) was that she was told it could either go away or get worse as I hit the age of puberty. I was on a couple of different medications and broke out in hives when they changed one of them but other than that, things were quite normal for me.

Fast forward to age 14 or 15 and since I had not had a seizure in a few years they decided to start lowering my medication. I am now 41 and have never had another seizure in my life. I have my driver's license, have three kids, and no problems with anything. Also, my doctor at the time told me that even though one question on many medical forms are "do you have or have you ever had..... epilepsy", he said I could answer no since there was no reason for me to have it and I only had seizures a few years at a young age. He told me this because when I went for my driver's license I checked yes, they wanted a note from the doctor saying i was seizure free and safe to drive (as much as any teen! LOL) That was when he told me i could check the no box. My mom said that it was called "ideopathic epilepsy" since there was no medical reason whatsoever and I wasn't born with it either.

I just want to let you know that I hope all goes well with your daughter and hope that it isn't a sign of anything truly serious. I hope that my story will give you a bright side to look on for now.

Best wishes and good luck with your wee girl!

 

[debrapagliasotti]

DS does not have petit-mal, but he has had several seizures in the last few months.

My youngest DS (now 2) was having seizures just before his 2nd birthday. He had 3 seizures in a 2 month period and 1 just recently. He went in for an EEG in Oct and the test results came back normal. Normal EEG meaning, he did not have an active seizure during the test. About 2 weeks after the EEG we saw a pediatric neurologist and after describing the seizures to the doctor, it was determined he has breath holding seizures. When he gets hurt, sometimes he will force himself to hold his breath and he will go into what looks like a grand-mal type seizure...eyes rolling back, rigid body, drooling, occasionally convulsions.

My DS has delays in speech and development. At age 18 months he was a 9 month old as far as speech. He has several delays at just over 50% and several delays at 25%. He sees a speech/developmental therapist weekly. We dont know if this has anything to do with the seizures or not.

We are in a "watch and see" mode right now with him. We know what tends to trigger the seizures. We have an emergency medication we can give him should he ever have a seizure lasting more than 5 min, but the type of seizure he has should never reach 2 min, if it does, I am supposed to call the doc. They tend to last about 90 seconds until the rigid body or convulsions stop.

I wanted to wish you the best for your DD. I know its a scary situation. Such a helpless feeling.

 

[mickeysbutler]

My DD8 had her first when she was 5 in her sleep a hour or so after going to bed. Eyes rolled back, stopped breathing, slight twitching, drooling, loss of bowels. We were told by her neurologist that if she didn't have anymore within 6 mo, it would likely not happen again...2 1/2 yrs later, she has another, this time an hour before normal wake up time...no loss of bowels, no stopping of breathing. She had EEG, dx with benign Rolandic epilepsy. Happens generally in the beginning or end of sleep cycle. 4 months later (couple weeks ago) she was staying the night with a friend and had another...this time while awake. Not fun waking up to 10 missed calls and a txt that states she had a seizure. Fortunately her friends mom is a stemcell transplant nurse, so she was not freaked out. So there was a spot on the back of her brain that was in question after the first and second seizure, but the EEG and pattern of other 2 seizures pointed toward Rolandic. So still no meds required, but if they increase she will need them. So scary when they happen. Just makes you so sad. I feel for you. Feel free to pm me.

 

[toodycat]

When I was around 8, I started having petit mal seizures. There was no specific cause and effect, though I had recently taken a fall. I had them for a while until the doctor was able to find the right medication. After that, I was pretty controlled for about six years until I had two or three grand mal seizures in my teens and early 20s; they were the result of sleep deprivation and, in one case, drinking (The doctor who prescribed my meds never told me not to drink!). After that, I never had another seizure until my late 40s. My EEG was never normal, so I couldn't ever stop the medication. The 3 seizures I had in my late 40s were the result of a medication a doctor gave me that interfered with my anti-convulsant---thanks for the thorough research, pal--- and lack of sleep from menopause. Otherwise, the bulk of my life has been normal. I have a driver's license and work as a school teacher. I am married and have one son who is on the autism spectrum which may be a result of the depakote I was prescribed for 20+ years to combat the epilepsy. The doctors says that at the time, they had no choice but to prescribe depakote. However, with therapy and medication, my ASD son is absolutely fine and college-bound. The only thing I can't do that I would like to is scuba dive. I hope everything works out OK for your daughter. I know it's impossible, but try not to panic.

 

[MommaGinger]

Thank you all for sharing your stories with me. I am truly sorry that you all have to deal with this. Knowing that there are others out there that understand is really a great help. Our appointment with the Neurologist is tomorrow to go over the results in detail and to plan out a course of action for my DD. I'm guessing once I know more I would have to speak with her teachers just to keep them in the loop.

She also has several developmental delays and has been receiving OT/PT and speech and was diagnosed with a genetic abnormality last year. I am not sure if everything is connected or not.

Any suggestions on some good questions I should ask her Dr?

 

[TiggerStac]

We believe my youngest has had about 5-6 of them in the last year. He just had an eeg that was "normal" for a 2 year old. We are in watch/see mode. If they increase we'll be off to neuro for immediate visit. If we were to try and get in now it would be months and we're told it'd be pretty much wait and see. They wouldnt treat when he's not having many. He also has a rare disease called mastocytosis. I saw his masto dr last week and she's wondering if they are related. So next time he has one I have 2 hours to get a particular lab test done on him. It's one of his masto labs (tryptase) that we run 1x per year now. But if he's reacting, we run. She wants to see if it may be related to his masto.....

SO we are in wait and see mode, too

 

[MommaGinger]

We believe my youngest has had about 5-6 of them in the last year. He just had an eeg that was "normal" for a 2 year old. We are in watch/see mode. If they increase we'll be off to neuro for immediate visit. If we were to try and get in now it would be months and we're told it'd be pretty much wait and see. They wouldnt treat when he's not having many. He also has a rare disease called mastocytosis. I saw his masto dr last week and she's wondering if they are related. So next time he has one I have 2 hours to get a particular lab test done on him. It's one of his masto labs (tryptase) that we run 1x per year now. But if he's re acting, we run. She wants to see if it may be related to his masto.....

SO we are in wait and see mode, too

I'm sorry that you guys are having such a hard time. It must be really scarry. At our appointment they told us that my DD had 7 of these seizures during the EEG alone. They put her on medication and now we wait and see how she does. Thank you for sharing you experience with me and I wish you all the best.

 

[I Love Pluto]

I have grand mal seizures. My son had petit mal seizures from infancy through junior high. At about age 13 or 14 - they seemed to stop.

He is 38 now. He's a banker at our local casino. He is fine.

Try to relax. It's OK.