how can you tell if your child has a aura with a fit?

[stacey]

Hi

My 5 year old son has the absence seizures from 4-10 times a day and even then thats only the ones we see.

When he is in a fit sometimes he has the biggest grin on his face while he is out(i know he is out because his pupils are huge and he is staring straight at me)and then he either cracks up laughing as we see the change come over him and we make him run it off because he is like a maniac!! he runs around like he has been bitten on the ass!!



I have observed this almost every fit and it makes me thing that there really must be some sensory issue here and i wish i knew what to look for before he has one as there are no triggers so far that have been noticed.onder:

Thanks all

 

[Nakamova]

Some auras can be hard to perceive from the outside, since they can be faily subtle sensory or autonomic disturbances. And it can be tough if he can't tell you what's going on. I think the more you can observe, the better -- your instincts will help you pick up on the signs and situations associated with his seizures.

 

[KarenB]

I believe our Jon sometimes has auras before a seizure -- at night, he will sometimes come climb in bed with me, shortly before having a seizure, and he seems uncomfortable, restless, sometimes seems like it's hard for him to breathe, and has this thing he does, where he tries to burrow under something.

His daytime seizures (only about 10% or less does he have them in daytime) seem to come on abruptly, without warning, but there's usually a certain trigger, like drinking cold water, or watching TV (esp. if he's right in front of the TV).

That grin after a seizure -- yes, we do see that. Like a kind of a crazed grin -- and then the manic behavior -- we see that following about 80% of his tonic seizures -- he wants to run around, but it's like he's drunk, so he's weaving and bobbing. One time he jumped up and ran full speed right into a closed door -- had a big bruise on his forehead.

Our neurologist says that it's probably actually a kind of seizure in and of itself. So...we used to say that his tonics only lasted about 10 or 15 seconds, but when you add in all the crap that comes afterward, it could be 5 or 10 minutes before things settle down.

 

[cazzy]

my girl suddenly change throw things at me oddest thing she start picking either her body she no feels it just these gouges in hands or feet,she has no memory of doing it

 

[stacey]

Hey

The other thing I forgot to mention is that he also says " what the hell is that?" after a fit and you hit it on the nail Karen B it is like he's manic and has a crazed grin so. It's hard to tell if it's something like tingling or if it's a sound he hears.

 

[KarenB]

He might also be seeing something. There was one time when it appeared that Jon was having a sort of hallucination. He's non-verbal, so I'm just going on what he was doing (starting over his shoulder in utter fear).

 

[stacey]

Karen B

yeah thats true because when he has a complex partial he grabs me and makes a noise sort of fear and something else the sound raises the hair on my arms sometimes.its almost like a primal cry of fear and a moan.The only good thing is now my 2 1/2 year old now hugs him as he has it which is so sweet and he is so caring

 

[MuayThaiFighter]

Sorry your little man has to deal with this. 5-10 a day is a lot, has anyone brought up any plans to control the seizures better? Like I say, little kids should be out playing and having fun. Not dealing with any health issues.

Best wishes to you and your son.

 

[stacey]

hi muay

they have put him on tiagabine as well as the frisium and tegretol CR and they are decreasing the keppra which is a relief. it almost seems like a game of russian roulette with the meds, you dont know whats gonna come next and if the next one will do more harm then good.

he has improved a little but like everything else you end out waiting for the catch.

nice to hear from you

 

[MuayThaiFighter]

I totally understand that. Russian roulette is a great analogy to the process of find the right drug. It can be so frustrating. For the person themselves and heartbreaking for the loved ones, seeing another hope crushed.

I glad he has a some improvement, and it will be an amazing day when stability is found in all the chaos.

 

[stacey]

Hi

Yeah I'm crossing my fingers right now because today his personality has just shone it has made my heart skip a beat to see.

it's so nice to see him like his old self even if it may only me for a short time with the meds being adjusted.

I'm not religious but I'm more spiritual and I'm definately appealing to the higher power up there to love my kids as much as I do and to make them better.

Please cross your fingers for us

 

[MuayThaiFighter]

It's always very possible that this drug could be the one, or they can lessen in severity. I will keep my fingers crossed and hope he has an even better day tomorrow!

 

[stacey]

Hey guys

Today I had luck because xavier was so well behaved even going to the city he was incredible and normally he is a nightmare so I can't take him.

Yay!!

 

[Nakamova]

That's so great! Hope this good trend continues!

 

[donnajane]

Just been reading everyone's posts re aura's. My little man is almost 21 months and his events well not sure anymore I think I am almost becomming really use to them as they as so much part of him now. I was out walking with him in the pram this week, eldest son on a skate board attached to the pram and my mum pushing my 3yr old in a pram just behind me when she said it looks like he's having a seziure. He was slumped over to the side left arm hanging out of the pram, she said he had been like that for a few minutes, when I checked him he didn't respond at first but eventually did, he stayed slumped over for another minute then suddenly was back. I saw him lean over but don't worry much now so long as he's in a safe enviroment.
But this interesting behaviour some of you have been posting about i have been able to see in my little man, never really thought about it in relation to his events. The Nureo said he is almost manic at times. He has quite a few events when he sleeps so often stumbles around, sometimes is so wobbly can't walk at all and falls to ground, when he wakes up. His Nureo calls it walking in a "fog" which some do after having seizures. I can't wait until he can speak more to let us know what is going on. I also know what you mean re the crazy grin I had never really thought about it in relation to his events but when I think about it it often happens just after. Stacey loved the comment about Xavier being well behaved I know how it feels as ever day I wonder what the day will bring.
Thank you all for sharing your experiences.
Donna

 

[KarenB]

We recently found that making a every so tiny decrease in Jon's Diazepam has improved his behavior AND his seizures have decreased a bit. He was on 4 mg of Diazepam, and we bumped it down to 3.75. He's much calmer (Diazepam/Valium is meant to be a sedative, but in Jon it turns him hyper/aggressive/agitated) and has better self control. And he's down to 1 seizure a night instead of 2 or 3.

 

[stacey]

Hi

it has been a great thing for me to be able to share what happens in my boys lives and how the epilepsy helps them so if it means that it helps someone understand whats happening for their child/ren then im very pleased

i had noticed with my youngest child kyuss that he was doing this funny look like he had some seriously scary thing behind him and he would look extremely scared and startled and they would last about 30 secs and then he would be fine.now looking at it , it makes me wonder if they were myclonic jerks like the doc suggested or if they were actually an aura. ponder .

its great to have people on here to bounce ideas and concerns off of because it can be a very isolating world living with E.

i hope you have all had a great day