I was wondering if anyone has had any experience with absence seizures (petit mal). My 3.5yr old is showing classic signs and I have an appointment next week with my gp to get a referral to a specialist. I'm so scared that she will need to go on medication. She has numerous seizures a day, up to six that I witness and I can't seem to find a trigger. They last up to ten seconds but usually only about five. I'd love to hear from anyone with any experience or info about these seizures. I'm quite terrified. There is no history of epilepsy in my or my husband's family that I am aware of. Thanks in advance x
How scary for you, hun! I havent experience with kids and seizures but DH has these seizures. His started out of the blue about 5 years ago and he was having around 1 per hour. It was absolutely terrifying, we thought he was having a stroke! He has to be medicated to be able to keep a drivers licence and allow him to function/ work on a daily basis.
Im sure you know but the way it was explained to us is basically its a heap of little neurons firing off in the brain at once and the signal can't be understood properly, hence a seizure occurs.
Hopefully the process to see a neurologist where you are is nice and quick. If there is anything specific I can answer just say the word
sounds scary. sorry no advice my only experience was in primary school one of my friends had epilepsy and would have those types of seizures. i remember getting taught how not all seizures are big shaky type ones and we were taught how to recognise if our friend had one and to just sit with her and get somone else to get a teacher. i dont remember if she actually had one tho, she was on medication.
hope they figure out your daughter and can manage them.
first off *hug*
second. its ok. drugs are not that bad - DJ has cluster fits now - he's on two type of meds for it.. it can be scary watching them have them (regardless of size/length ect) but the main thing is she'd most likely not be aware of them happening (Dj is on enough meds he knows and fights them)
third - she may grow out of it - a cousin of mine had them as a small child and as far as i know now (he'd be 10?) has not had any in a few years.
fourth - if you need support and the likes check out epilepsi victora (im summeing they have one in every sate?) they are wonderful and can come out and teach you how to do manage/deal with them.
If you like PM me an i can chat to you about my dealings with seasures in small kids (DJ is amost 4 and had them since he was 22 months old)
A friend of ours has a boy who started having at a similar age. He is under Simon Harvey at the RCH and they cannot speak highly enough about him.
He treats the family along with the grandparents with so much respect
The epilepsy foundation is worth getting in touch with as they are so helpful and supportive.
Thank you all for your replies. I have an appointment with our GP on Tuesday. I know that she is definitely having absence seizures. The video on YouTube showed exactly what she does. I have no doubt that's what is happening. I just hope that medication isn't the only answer seeing as she doesn't have them hugely frequently. Although if there is no other option I'm happy to go down the medication route. I will let you know how we go. Thanks again for the replies. It's so interesting to hear other people's experiences and how they deal with it. Even though they aren't the big grand mal seizures they are still frightening.
if anything i think they might be worse than Grand Mal's... only because if someone has a grand mal infront of you, you know know exactly what is going on. if someone has a petit mal, it might not get noticed. sorry if that scared you more...
Working out the trigger would be the first big thing, it might be something she can avoid. A friend at play group is fine with strobe lights etc.. but gets set off by the sunlight coming through the trees when she is a passenger in the car... so could be anything...
I hope your gp can help you out, keep us updated =)
My nephew (11yrs) has epilepsy and has absent seizures. He goes very pale and spaced out, it can be hard to tell sometimes if he's having one so I ask him if he can look at me so I know if he can't then he is having one. They only last a few seconds but some of them leave him feeling very tired. He doesn't have a problem with his medication...
Hi MS
My sister has epilepsy. She started with noticeable petit mal seizures when she was about 10. (When I was going through some of mums records after she died, I discovered some medical documents which indicate my sister suffered from seizures between 12 and 36 months old).
She was put on Epilum and this managed them until she suffered a GM seizure when she was about 14 or so. They had thought she would grow out of it, as is often the case with childhood epilepsy. Her GM was quite scary for everyone, and much more so than the absence seizures. She phased out, made a comment about the pretty lights all around the computer monitor and collapsed. Although she is not now photo-sensitive.
After this, they put her back on the Epilum and played around with dosage until they found the right one.
She was seizure-free until the morning of her 18th birthday when she had a fit while driving her car.
As an adult, she is allowed to drink, drive, see strobe lights, etc. but her fits are brought on by fatigue, physical or extreme mental, stress, excessive alcohol or if she stops taking her medication (which she does periodically when she is being stubborn) - or a combination of all of these. The major factor, as it was when was a child with the petit mal, is tiredness. She functions very poorly when overtired.
By far, her most successful and least stressful periods with the illness have been when she is working closely with her neurologist, taking her medication properly and managing her stress and fatigue levels.
It is just a part of her life and who she is, and for the most part, she works with it and it is a pretty non-influential part of her life when managed properly.
I hope you can get some answers, and a great neurologist who will work with you both and find a successful treatment. I hope he grows out of it too.
Really interesting to read this... My friend is currently looking for a diagnosis for her 7mth old, who she says "blanks out". They have tested her for epilepsy and at this point she's negative for that. She has had all sorts of tests... Nothing conclusive. I'll update if I hear anything...
We've been given a referral to a paediatrician but he's got no appointments free until march. I knew it would be a big wait. My GP thinks it is definitely absence seizures but he hasnt had any experience with them so he's sent me on to the paed. He doesn't Seem to think they will medicate unless they are affecting her learning or functioning in spme way. I'm hoping we get a cancellation but I guess it's just a wait. Thank you for you comments and advice. I will update you as we progress.
Sorry that it's going to be a bit of a wait until you get some answers. I just wanted to pop in and say that if the seizures are not confirmed as such, you should look into getting some sleep investigations done as narcolepsy symptoms can be mistaken as seizures.
thats interesting they dont medicate. DJ has"smaller" GM and is medicated. Epilium and also keppra - they both keep him "stable" as we found out tryingt weak him off the leppra under peads advice.
I know from the ones DJ has our pead explained it like some one renching the antenna out of the TV - and the fuzz you get, and you "lose" part of the program and take a while to get it back and it might not match exactly (re-wireing the neruological pathways in the brain) look into the epilepsi foundation they'll be able to talk you though managent of them and what to do if your DD has a GM you're doing all the right things hun.
my LS is right elipi fits tend to be baught on by being tired/stressed (DJ was the first one but thats genetic)
Does your GP know you will be waiting until March? They may be able to phone up and ensure they can't do anything earlier.
When Phoebe was a baby we were told we'd need to wait 3-4 months for our appointment (regarding a possible neurological condition too - turned out all clear though). I reported back to the GP, she rang the paed's rooms and all of a sudden we had an appointment that week!
For something like this I'd be making sure the GP knows you are waiting so long. It could be that she shouldn't wait that long and the paed may force the booking forward. Good luck with it all. x
We ended up speaking to a friend who is in the neuro industry and she said that we definitely shouldn't be waiting until march. She is still so young that it could be affecting her developing brain so we ended up going to emergency and were seen by a paed who referred us to the neurologist at the children's hospital. We have an EEG appointment on Thursday. The doc in emergency confirmed it was epilepsy but can't say it's absence seizures only until they get the brain activity analysed. I'm very nervous but fingers crossed it will be easy to address. The frequency and severity of them have gotten worse this week so I'm glad we decided to take action now rather than wait.
That is really great that you were able to get the ball rolling so much sooner!
Good luck for the ECG on Thursday, I really hope you can get some real answers and a starting plan of attack. xx
Absence seizures (petit mal) - help please :(
Reply With QuoteI havent experience with kids and seizures but DH has these seizures. His started out of the blue about 5 years ago and he was having around 1 per hour. It was absolutely terrifying, we thought he was having a stroke! He has to be medicated to be able to keep a drivers licence and allow him to function/ work on a daily basis.
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