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Discussion Starter · #1 ·
On monday my DD, almost 3yrs, had 5 grand mal seizures


She had had one before when she was sick with rotavirus in february. This time she had a slight tummy bug. She didnt have a temperature so they were not febrile convulsions.

The doctors have talked about starting her on meds to prevent any more seizures but b/c she has only had them when she hasnt been well they are reluctant to at the moment. She is going to have a sleep deprived EEG soon.

She is so exhausted. She is having difficulty with fine motor skills, talking and walking. Her arms seem weaker than her legs. I was helping her choose a sticker from a sheet. First she tried to tell me which one she wanted but couldnt, then she tried pointing but ended up pointing at it with her toe. She is holding her little body tight and tense all the time.

She has been having a few absense seizures since monday too.

DH and I are just waiting for it to happen again. I feel on edge the whole time. Everytime she falls down, jerks an arm or cries out, my heart is in my mouth.

DD is asking to nurse a lot which isnt surprising but I am a little scared to. When she had the seizures she bit her tongue and the side of her mouth. I am worried that if she starts to have a seizure whilst nursing she will bite me. It sounds so silly when I write it but I am nervous about it. Anyone any experience of nursing a child with a seizure disorder?

How do I get to a place within myself where I can relax and enjoy my child again? I am so frightened. It is terrifying to watch her go through this. At least she has no memory of them at all.

We have been given some Diazapam to give her rectally if she has a seizure that lasts for more than 5 minutes.

Its just a waiting game and I hate it.
 

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Epilepsy can be frightening for both the sufferer and those around them, so being unsettled is normal.

Did the doctors tell you anything about the kind of epilepsy your daughter has? For example, in which part of the brain the seizure did the seizure originate?

With epilepsy, it's about finding out as much as you can about the particular form your daughter has and coming up with strategies to avoid them if possible and to deal with them when/if they happen. Learning first aid might boost your confidence.

Are there any support groups in your area?
 

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My best friend's daughter (2yo) recently had her first febrile seizure, at the dinner table. It scared the living daylights out of she and her dh, and she was totally on edge, too, for about 2 weeks afterward.

To be honest, the only thing that helped her was time.
I don't know what else to tell you, my child has never had a seizure. I'm so sorry, that's so scary.
ITA w/joining a support group.
 

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If she is exhausted and having difficulty with fine motor skills more than a day or so after the seizures, then I would be very concerned they are still going on. If there is regression, IMHO, you need to get her on the drugs before permanent damage is done. I don't vax my boys. I don't use antibiotics except in life threatening situations. But when my baby started having seizures that caused him to start losing skills, I put him on the medication with very little hesitation.

There is no reason to do a sleep deprivation EEG. Just a regular EEG will do. I guess, perhaps I don't understand what you mean by a sleep-deprivation EEG. In a typical EEG, you keep them up until 11 pm. Wake them at 5 or 6 am. And then do the test at 7 or 8. This way they fall asleep easier. They typically need 15 min of consecutive sleep time. So we have been told.

If she is having these symtoms, it could be that she is having seizures you cannot see or while she is sleeping.

There should be no reason to do a sleep deprivation EEG unless meds have been tried, regular EEG has been tried, etc. and they are unable to determine the part of the brain, type of seizure, etc. Then challenging the seizure-threshold can be of value.

I see you are in the UK. Check out the epilepsy foundation website. There may be resources in the UK.

mv
 

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My heart goes out to you and to your DD. I can understand how her body would be tense and stiff, rigid. One Grand mal seizure truly EXHAUSTS the body (not to mention what FIVE would feel like). I imagine she's been needing lots of extra sleep and rest.

That's great to hear your neurologist will be doing a sleep-deprived EEG to find out what part of the brain they're associated with. And I'm sure they told you how more damage is done with the seizures than from the meds, by far; yet it makes sense they would wait to see if it's the illness first.

Grand mal seizures go hand in hand with petit mal (otherwise known as ''auras'' with some neurologists). Her trying to point to the stickers and pointed to her toe clearly struck me as an aura. They only last about 1-2 minutes, often as a fore-warning that a grand mal is coming. Although, the ability to communicate for an hour or two after the aura, is often the case. Going on three, it's hard enough to communicate as is!

I wonder if it's the temporal lobe or frontal lobe the seizures are going from, given the delays. The EEG will be a relief in some ways, given you more info you so need. I hope it's really soon.

I imagine they gave you some info about the connection with sleep and seizures? Just in case they hadn't....getting as much sleep as possible is really key with 'preventing' seizures. I put it in quotes because there is only so much you can do, but it makes a big difference, which of course is why they do the sleep-deprived EEG's to find out what is going on, to try and 'cause' one but even if that's not what happens, they'll find out more key info just the same.


It may be hard to keep your little one awake (and yourself!) ALL those hours the night before, but give it your best shot.
the night before. If a seizure disorder is what is found and they diagnose anti-convulsants, the seizures will most likely stop (or they'll try a different one for most successful results, won't take long, oftentimes the first or second meds work and work well).

If they continue, and you see a 'sudden' difficulty to communicate/aura,
you may (possibly) understands a grand mal is coming soon, either in minutes or later that day...
which is why I'd humbly suggest to continue the breastfeeding. Though I can imagine how you feel! Of course, with respect, it's your choice but I imagine the pros outweigh the cons with the breastfeeding and the nursing would give immense comfort to both of you.

Hang in there

Wendy
 

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: My 2 1/2 year old son has epilepsy, he takes Trileptal and Topamax right now to control his seizures...he seems to have break through episodes 4 times a year or so.
 

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If she had the seziures without sleep deprivation, why in the world would they need to deprive her of sleep to reproduce them? Seizure activity leaves "marks" in the electrical activity in the brain days, weeks, sometimes months afterwards. A child who has had 4 or 5 grand mal seizures in 1 day, surely, they would be able to find something on a normal EEG which involves some sleep deprivation in order to get the child to fall asleep. And second to that they might try a longer period of monitoring with many channels being monitored again, perhaps not observing an actual seizure, but observing how the brain handled the seizures afterwards. If the child is not on anti-convulsants, chances are, they will see more seizures.

I think you need a second opinion about this "sleep-deprivation" EEG.

mv
 

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Discussion Starter · #8 ·
Thank you all for your replies.

Very little has been explained to us so far so all your posts were very informative.

About the sleep deprived EEG. I'm not sure if maybe it works differently in the UK but for a normal EEG they require the child to have a normal nights sleep. DD did have one of these a few months after her first seizure but it was normal.

For the sleep deprived EEG we are asked to make sure she has 6 hours less sleep than normal the night before the test. Just not quite sure how we get her to the hospital for the test without her falling asleep in the car.

I am concerned that she is having other seizures too. Yesterday she was kneeling up on the carpet when she just fell forward and banged her head into the floor. She made no attempt to put out her hands to save herself and afterwards she had no idea that she had banged her head.


She seems quiet and withdrawn. Not the same child as before.
 

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That does sound like a seizure too. I'm so sorry this is happening. Are you in contact with ped neurology to let them know about this latest?

I would record every incident in a journal with a description by every person who witnesses it. Just like you have here. Time of day, date, etc.



mv
 

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I'm sorry you're going through this, I know it is difficult. My cousin (age 9) had two of the milder kind of seizures in the course of the past year - EEG's were done that were said to be "very strange" and were sent away to be analyzed, but I don't think they ever figured out what was really happening. A couple months ago she had her first grand mal seizure, while playing a video game so they suspect that one at least was triggered by the game and it's light. Luckily hers have been very spaced out in time and she seems fine in between them - I don't think she's on any medication yet but they are watching her closely.

I second the idea to keep a journal of what exactly happens and when, even if you're not sure it is seizure related. I hope they figure out how to best help your daughter soon!
 

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Briefly: If the seizure the first time was an absence seizure, then it is likely it wouldn't show up on a regular EEG. If she had 4 grand mal seizures, they should show up. Google: Epilepsy Foundation. And see if there are resources close by to you.

mv
 
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