4 year old with suspected atonic 'drop' seizures - feeling scared

[goldenbaygirl]

In Feb this year my four year old DD started having strange episodes where her head would suddenly drop or 'flop down' in the middle of her doing something. at first they were so rare and quick we hardly noticed them. And they went away for a month or so after we thought maybe she was overtired so we tried to make sure she had regular afternoon naps (not easy with a kid who hates napping!).

Well they have suddenly come back and she is having several a day (that we notice). They seem worse and a couple of times she has fallen down and hit her face on the floor (including our concrete floor) resulting in bruises, fat lips and this afternoon a blood nose. She is distressed and confused afterwards.

I am really distressed by these and worried she will really hurt herself and also that it could be the signor something very sinister :(

I finally got a paediatrician appt last week, but had my DD and young baby with me so was a bit flustered and overwhelmed as they we both grizzling and fidgeting. I feel like the doctor didn't take it seriously enough, or maybe I didn't explain things well enough. They have booked her for an EEG but said it could take a month (!!). We don't live in the UK.

Just feeling scared and sad.

[Hurr1cane]

Sorry you feel this way, it is so scary.

We are currently 5 years into DS having seizures with no diagnoses of them yet

What they're going to do is try and find a brain pattern and try to find the cause, they need to find this to know what would be appropriate medication wise.

Seizures are scary, but they're a lot more common than you'd think, so what you took as the doctor not believing you as to how bad it was, was probably just him having seen it so often before and it not shocking him.

What you could do is find out the number for your local epilepsy nurses, call them if there's ever a bad one, and they'll usually tell you there's nothing to worry about at all and it's all fine, but better calling them then wasting time at the GP. Because they are scary to see.

Also, if it's happening a lot and she's hurting herself I would consider getting her a helmet.

You need to video one of these episodes, that way the doctor can see exactly what happens.

Keep a diary of when it happens and try to note the circumstances around it, had she eaten/ drank anything? Was she running around? Was it hot/cold? What was her mood like?

Finding a pattern can sometimes help because sometimes there are outside triggers for seizures.

[goldenbaygirl]

Thank you so much for your response Hurr1cane. You make total sense. We are trying to record them. The doctor did also say to try and video one - but this seems pretty unlikely as they are so random and last for a few seconds only. Have you managed to capture your DSs?

Do kids with this kind of thing wear helmets? I have never seen it, but i guess it makes sense. Maybe I should wait for a diagnosis?

Many questions. Just so keen to know what it is and what I can do.

[Hurr1cane]

No idea if they all do but there's a girl in DSs class who wears one because hers are so regular, DSs are more ad hock and we can sort of tell when ones about to start so he doesn't have to wear a special helmet, although on a very bad day if he wants to go on his climbing frame (although it's not happened, a seizure up there would be my worst nightmare) I'll say 'lets wear your bike helmet today, that's cool' but he doesn't know what for.

I have managed to record his absences but not his proper ones, I just panic, and they always ask how long they last, to which I answer 'no idea but it felt like 100 years' because when you're in the moment, it's hard to start a timer or a video because you're just in a state of panic for your child so I do get it.

Can she say how she feels before it or anything? Maybe you could work on getting her to sit on the floor is there's any warning signs? Just to minimise the injury?

I know it's scary and the doctors don't seem to care, but it's because she isn't in any immediate danger, even though to you it feels like she really is.

[adoptmama]

Hope you get some answers soon. DD was diagnosed 3 years ago with focal motor seizures. Some tonics, but few and far between thankfully. Medication gives her good control with only occasional break through seizures. We are also out of the UK and I found facebook groups useful for support and also Epilepsy Action UK. Many children also grow out of their seizures so it is not necessarily a life-long condition.

[adoptmama]

If you don't get clear answers off the EEG push for an MRi. DDs seizure activity did not show on the EEG - it was clear despite her having multiple seizures right before they started. If the seizure site is too deep in the brain an EEG will not pick it up. Feel free to PM if you have any more questions or would like the name of the Facebook group.

[goldenbaygirl]

thanks adoptmama - I pushed again with the doctor today and they are suggesting she could start with sodium valproate to control the seizures even before she has an EEG. I am just trying to decide if they are serious enough to start medicating or if we wait to see if they peter out. Will see GP tomorrow and see if he can answer some of my many questions.

[adoptmama]

I've never heard of anyone being given medications before a diagnosis. Personally I would not. You need a pediatric neurologist to make the diagnosis and make a treatment plan based on that diagnosis. If you need impartial advice I would advise you to contact Epilepsy Action UK and see what they can suggest to you because I can't understand why anyone would prescribe anti-seizure meds without a proper diagnosis. These are pretty serious medications, often with side effects, and I personally would wait for more information.

[adoptmama]

DD started on valproic acid too. Side effects included significant weight gain and sleep problems. You need blood tests to monitor liver function too.