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#1 of 23 Old 03-16-2010, 03:02 PM - Thread Starter
 
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Not sure if this is the right place to post this my dd caitlin has suffered from what we thought were febrile convulsions (her first 6 were all with a high temp) but her last 2 have not been with a temp she was sent for an eeg after her 1st non fever related fit and i've just found out today that her eeg results are abnormal.
has anyone else experienced this with their lo(s)? i'm getting myself all over worried, i thought she had finally grown out of them when she went so long without them (last one was december 08) and for her to not only have 2 within the space of 4 weeks, they also appear to getting worse (feb 35 mins, march 45 mins)

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#2 of 23 Old 03-16-2010, 04:19 PM
 
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s I don't have experience with my los having seizures, but I had/have a seizure disorder/epilepsy. I had one grand-mal/tonic-clonic status seizure when I was 6.5 yrs old and was then in a coma for ~2 wks. I was then on 120mg of phenobarbitol for the next.. 15.5 yrs till I got pregnant with my DS1 and went off medication. I've been fine ever since. There are *lots* of different medications to help control seizures these days, and lots of people are able to live perfectly normal lives despite having epilepsy. Lots of kids do eventually outgrow them too. I apparently did... although the last eeg I had 4 or 5 yrs ago now was still abnormal...

Good luck!!
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#3 of 23 Old 03-16-2010, 05:27 PM - Thread Starter
 
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Thanks for your reply, it's so scary to see your lo like that knowing theres nothing you can really do, i'm just waiting on her appointment with the dr who reffered her for her eeg to come through.
i'll keep you posted on when we get our appointment and how she gets on.

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#4 of 23 Old 03-16-2010, 06:05 PM
 
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This is relevant to us. My son had 4 seizures in a few months last year, and we, too, thought that was the end of it---until Sunday when he had another seizure (at the public swimming pool, no less).
We cannot do an EEG because he's too active and he couldn't be sedated for it. We had refused an MRI until now because again we thought we were out of them.
Also, like you, half or more have been with fever that came after the seizure, but 2-3 were without.

We're left not knowing.

That's all I've got right now mama. Empathy.

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#5 of 23 Old 03-16-2010, 06:22 PM - Thread Starter
 
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It's awful the not knowing isn't it, not sure what it would be like where you are but here they give the kiddies toys and books to occupy them while they do the eeg caitlin is quite a giddy lo also and has managed (even though the last one she moaned a lot) to sit for it.
i hope you get an answer soon.

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#6 of 23 Old 03-16-2010, 06:27 PM
 
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No, there is no.way. he'd sit through it. He's very busy and high-needs. He's still only 2 as well.
We were offered an MRI, but he'd have to fast and be put under general anesthesia, so we refused when he was without a seizure for several months. But now we have to revisit these ideas...
We'd also been offered anti-seizure meds which we refused because he'd been without for so long, and because of the indetermination about whether his seizures are febrile or not. And that he'd need regular blood work as the meds can damage (liver? kidneys?).
He is diagnosed with epilepsy officially. I hope that there is no serious cause of his seizures and also worry about how these will affect his life if he continues to have them.

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#7 of 23 Old 03-16-2010, 06:40 PM - Thread Starter
 
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I know what you mean i'm also worried about how the fits will affect my dd's life she had her first one when she was just 6 mths old and had her eeg when she was just under 3 when she had her first eeg she had 5 fits by this point.
I hope your lo doesn't have anymore

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#8 of 23 Old 03-16-2010, 07:23 PM
 
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#9 of 23 Old 03-17-2010, 01:56 AM
 
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DD started having seizures following a near SIDS event at 4 months of age. We went through a few meds in the ICU, but have been well controlled on Keppra for the last several months. We have not had any additonal seizures, but her EEGs are still abnormal, so we are keeping her on the seizure meds at this time. We want to focus on tapering the muscle spasticity meds, which include Valium, which could be helping to control seizures.

If she does need sedation, the staff at the hospital has been great about scheduling multiple procedures at the same time to minimize the trauma.

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#10 of 23 Old 03-17-2010, 05:42 PM
 
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First, . Seizures are very scary. My son developed a seizure disorder almost 2 years ago now. He also had abnormal EEG results. What are your dd's results, do you know? My son has something going on in the right frontal lobe. His seizures are partial complex seizures that affect his left side. Also his brain cannot halt the seizure once it has started (status epilepticus). He's on a drug called Trilpetal which has been effective (and causes very few, if any, side effects). His seizures happen during sleep cycles (not sure why)...so in the middle of the night usually.
Are you saying that your dd's seizures last 35-45 minutes? Has medication been suggested?

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#11 of 23 Old 03-17-2010, 06:09 PM - Thread Starter
 
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Quote:
Originally Posted by starlein26 View Post
First, . Seizures are very scary. My son developed a seizure disorder almost 2 years ago now. He also had abnormal EEG results. What are your dd's results, do you know? My son has something going on in the right frontal lobe. His seizures are partial complex seizures that affect his left side. Also his brain cannot halt the seizure once it has started (status epilepticus). He's on a drug called Trilpetal which has been effective (and causes very few, if any, side effects). His seizures happen during sleep cycles (not sure why)...so in the middle of the night usually.
Are you saying that your dd's seizures last 35-45 minutes? Has medication been suggested?
All i know is they abnormal i won't know more until i see the dr who refered her for the eeg in the first place.
she has had 8 of these seizures now first one at 6 months old only lasted about 5-10 mins, second one when she was 18 months and lasted about 10-15 mins, 3rd she was 26 months and that one lasted about 30-40 mins, 4th 27 months and lasted about 15-20 mins, 5th 32 months and lasted about 25-30 mins (1st eeg done at 35 months results where normal) and 6th 3yr 5 mths and lasted about 30 mins.
all the above where with temps above 39
7th about 6 weeks ago and lasted about 35 mins and 8th was 2 weeks ago and lasted 45 mins (eeg was done just over 2 weeks ago)
medication has been mentioned but they want to wait till she has been to see the dr at the hospital before discussing this further because he said the medication comes with a lot of side effects.

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#12 of 23 Old 03-17-2010, 06:56 PM
 
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That's a lot of seizure activity, . What drug are they offering? Many second generation seizure drugs actually cause very few side effects and with a seizure history like your daughter's, I would think would be very helpful/beneficial. I hope that you can get to the bottom of this soon. Has she had a scan of her brain (CT or MRI)? How is she developing otherwise?

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#13 of 23 Old 03-17-2010, 07:07 PM - Thread Starter
 
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Originally Posted by starlein26 View Post
That's a lot of seizure activity, . What drug are they offering? Many second generation seizure drugs actually cause very few side effects and with a seizure history like your daughter's, I would think would be very helpful/beneficial. I hope that you can get to the bottom of this soon. Has she had a scan of her brain (CT or MRI)? How is she developing otherwise?
They haven't said just said they may have to put her on medication for the seizures, no ones really telling me anything i feel like i'm really being given the mushroom treatment. i hope i'm not waiting too long to get this appointment.
no only thing she's had is the eeg scan .
she's doing fine, quite small for her age but then all my lo's are petite.

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#14 of 23 Old 03-17-2010, 08:40 PM
 
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What type of seizure is she having? When is her appt.? (Sorry I couldn't find it in your responses when I scanned quickly). Over 30 minutes is a long time to be seizing. I'm surprised that they haven't offered anti-convulsants already.

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#15 of 23 Old 03-18-2010, 05:54 PM - Thread Starter
 
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Her eyes roll back, she goes all rigid and twitches, she is also really unresponsive to any type of stimulation, it's so awful to see her like that. her last 2 they gave her diazapan to to stop them so not sure long they would of lasted otherwise.
me too, although i shouldn't be surprised unfortunately as there pretty useless when she was in hospital the last time they lost her notes.
medication has been mentioned but thats it and what medication i've no idea.
I really hate all this waiting i'll be glad when we fineally have some answers.

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#16 of 23 Old 03-18-2010, 05:59 PM - Thread Starter
 
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We're still waiting to find out when her appointment will be if i haven't heard anything by tomorrow i'm going to phone the hospital to find out whats going on cos i need some answers.

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#17 of 23 Old 03-26-2010, 10:46 AM - Thread Starter
 
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i phoned the clinic today because i still haven't heard anything and they told me she doesn't have an appointment the dr wants her to have an eeg done but this they want her to be asleep for it and the dr. doesn't want to see her at clinic for another 2 months. more waiting now i guess,i'm getting really sick of this now i just want to know whats wrong with my little girl.

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#18 of 23 Old 03-26-2010, 06:31 PM
 
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Not sure if this will help, but my SN son had one seizure-like episode almost 2 years ago when he was 5. We had an MRI (due to other medical conditions, it seemed worthy and something we needed to do but didn't have a real reason until the siezure) which came back normal, but his eeg came back somewhat abnormal. In my layman's terms, the Neurologist explained it as static on the brain, one side. She said they usually see it on both sides, so she was a little perplexed. She said you can be predisposed to and never have an episode/seizure, or you could have many, or anything in between. We talked about meds, but since it was his first incident, we decided to watch and see. If it became an ongoing thing (so far he hasn't had another), we would re-evaluate. He does not have a history of febrile seizure. But my younger daughter, same age as yours, has had 2 fever induced febrile seizures, and that is very scary too. So I completely understand wanting to know what is going on.
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#19 of 23 Old 03-26-2010, 06:58 PM - Thread Starter
 
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The not knowing is whats making it even worse, i hope it's not too long before we get her appointment through.
fingers crossed this next eeg comes back normal and she has no more fits.

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#20 of 23 Old 03-28-2010, 01:17 AM
 
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OP, do you have rectal valium (Diastat) to give her at home? We are supposed to give my son Diastat for anything lasting over 5 minutes (and then call an ambulance). I would absolutely call emergency services if she has another seizure lasting more than 5 minutes and you have no Diastat. That can be dangerous.

My son has multiple medical issues- he is undiagnosed, but it is assumed, based on symptoms and testing, that he has a very rare metabolic disorder. He started having absence seizures probably six months ago, but he always giggled afterward and we wrote them off as toddler behavior (though laughter can be something that happens in the post-ictal period). In January, he had one episode where he stopped breathing, turned blue and rigid, and was unresponsive for 3 minutes. Three days later he collapsed, lost consciousness, vomited and turned blue, then was unable to walk/sit up for 5 hours. His ped got us a neurology consult two days later, we had an EEG (which showed no abnormal activity), and the neurologist felt it best that we do meds. He ordered an MRI and a lumbar puncture, and the MRI actually revealed a lesion in his right parietal lobe. We had another MRI done Monday, which showed the lesion hasn't grown, but they still have no idea what it is. There is inflammation in the surrounding brain tissue, which is what the docs assume is triggering the seizures.

Honestly, I would make a huge stink to get someone to see your DD if she has any more seizures. I'm sorry they aren't responding more quickly to you.
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#21 of 23 Old 03-28-2010, 06:55 AM - Thread Starter
 
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No i've never even heard of it, the paramedics have given diazepam with her last 2 fits plus she has also had it in the past.
her shortest fit was 5-10 mins and that was when she was 6 months old.
i always do phone for an ambulance when she has these because i don't know whats causing them and am worried that the one time i don't phone would be the one time it's something serious. her last fit was at least 45 mins (i'm saying at least because i don't what time it started, my neighbour came round at about 7.40pm and we reckoned she had been fitting about 5-10mins then and she was still fitting at 8.20pm so the paramedics gave her diazepam and she stopped within a few mins) her previous was about 35 mins from her becoming totally unresponsive and rigid although she started acting strange before this so now thinking about it, it may have been nearer an hour.
i intend to kick up a fuss if i don't have her eeg appointment through this week especially if she has another fit in the mean time, they are taking the mick now and i'm getting fed up of it.
thanks to everyone who has replied your support is very much appreciated .

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#22 of 23 Old 04-01-2010, 02:26 PM - Thread Starter
 
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I phoned eeg department today her appointment is for the 22nd of april so finely getting somewhere, i should receive her letter confirming this and giving me a time sometime over the next few days or so as it was apparently sent out on the 30th.
so getting a bit closer to knowing although would be better if it were sooner

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#23 of 23 Old 04-06-2010, 08:32 AM - Thread Starter
 
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Got her appointment letter through on saturday her appointment is 9am on the 22nd of this month, i have to keep her up late the night before and then wake up the morning of the eeg because they want her to go to sleep for it, the letter says they attach the wires to her head and then put her in a dark room to go to sleep and it will take 2-3 hrs to do the eeg.

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