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DD(6) is having episodes that the GP thinks ate absence seizures...

12 replies

NoMoreMarbles · 01/05/2012 00:24

Anyone with knowledge/experience of this able or willing to talk to me about this?

I'm worried sick Sad

OP posts:
NoMoreMarbles · 01/05/2012 00:31

Anyone?Sad

OP posts:
eggyblackett · 01/05/2012 00:41

Hi NMM. My dd1 has absence seizures, although she has an undiagnosed syndrome with lots of other symptoms, so not too much of a surprise for us.

Is there anything in particular you want to talk about ?

NoMoreMarbles · 01/05/2012 00:49

Thanks eggy I can't sleep thinking about itSad

I'm worried what (if anything) this will mean for her... Lifestyle changes/limitations/Diagnosis/investigations... I thought I was going a bit mad seeing something that's not there but it's happening about twice an hour on average for about 5-10 seconds and my sister has noticed now too so not just me now! DH didn't believe me as he hasn't seen it for himselfSad GP agrees with me and is referring to Alder Hey in Liverpool for investigations.

OP posts:
eggyblackett · 01/05/2012 00:58

Sorry to hear you can't sleep. I remember when I first noticed dd's absences - I found it really scary. I've got used to them and they tend to come and go these days; we can go for months without seeing one. It is possible for kids to completely grow out of seizures as their brain size and morphology changes.

It's good that you're being referred to Alder Hey, as presumably you'll get to see a paed neurologist?

It might be worth posting in the SN section? My experiences re. seizures probably can't help you much as dd1 has so many complex needs that some of the things that (understandably) are worrying you aren't concerning us e.g. impact to lifestyle. However, I'm here to listen if you want to talk. I do understand how frightening it is.

iMoniker · 01/05/2012 01:13

My DS2 was diagnosed with Absence Epilepsy when he was 5.5 years old.

It is scary but our Neurologist assures us that of all the types of seizures to have, the absence ones are the "best". There is also a very good likelihood that kids with Absence Epilepsy will grow out of it by their mid-teens.

We are in Australia so the diagnosis path may differ from yours. It's been nearly two years since he was initially diagnosed - he has had three EEG's to confirm the seizures, an MRI to look for injury/tumour and is now medicated with an anti-convulsant medication. He has needed a fair number of blood tests to ensure that the medication is agreeing with him and in the last couple of weeks had a huge round of blood tests to ensure that there were no underlying metabolic issues. We still see at least one seizure a day - typically when he is concentrating or reading aloud. They last around 5 seconds.

I totally understand how scared you are - it's frightening to think that your child may have a life long condition. I am still coming to terms with this and I've known for two years. My son had a particularly bad episode last night and it's left me feeling anxious and worried for him.

Keep your DD well hydrated, well rested and avoid too much processed/salty food. Try to be pragmatic as the diagnosis might take some time - typically the EEG is done by a medical technician, then sent to the Paed Neurologist for review. Even in the private system here this took more than a week.

I don't have much more advice, just wanted to say I know how you feel and if you need to talk, I am happy to listen.

NoMoreMarbles · 01/05/2012 08:15

Thanks again for the replies Smile

I feel a little less anxious now I have had a few hours sleep. Google is not my friend right now so I really appreciate the advice here.

The GP wants to meet on Thursday to go over everything and she did mention paed neuro, EEG and meds etc

What form would the meds come in? She hates tablets and refuses to have anything to do with themHmm so dispersable or liquid medicine would be best for her... Is this a possibility? I'm jumping the gun a little I know but I work best being prepared for things...

OP posts:
eggyblackett · 01/05/2012 08:45

My dd's emergency epilepsy meds are liquid. We're just waiting to see paed I. Early May about her going onto regular anti convulsant meds - I'd be massively surprised if they're not liquid.

eggyblackett · 01/05/2012 08:51

I agree that Goofy is not the best place to look, but have you see the Young Epilepsy webpage? They have a helpline for parents in the mornings - it might be worth giving them a call.

Sorry I can't link as I'm on my phone.

I'm glad you managed to get some kip :).

eggyblackett · 01/05/2012 08:51

Goofy? Google.

ripsishere · 01/05/2012 08:55

My DD was diagnosed with AE when she was about 2. She had an EEG which was useless, she didn't have an episode while she had the sucker things on.
She had liquid medicine three or four times a day. Can't remember exactly. She also had a blood test monthly.
She grew out of it fortunately. We moved to Thailand from Oman and I forgot to give her her medicine. I noticed that she hadn't had an episode for the whole four days and saw a doctor over in Bangkok. He advised watching closely while not medicating. She appeared to be seizure free so we stopped the mediciine completely.
She is 11 in a weeks time and fit and healthy.

WandaDoff · 01/05/2012 08:56

I had these as a small child.

I don't remember much about it apart from the yucky tasting medicine & the blood tests.

I'd grown out of them by the time I was 10, & as far as I know there are no lasting effects on me.

r3dh3d · 01/05/2012 09:03

Sorry just seen this. Massive amounts of Epilepsy experience here, alas.

Agree that Absence seizures is the one to have. They are utterly harmless and they will be seeing you mainly to make sure that it is just Absences.

Re: meds - the common ones (and for Absences, you would get one of those) all come in liquid form. Many of the ones that don't come in liquid form work do come as sugar-coated sprinkles or powder you can mix with a drink or yoghurt. It's a very very rare E med that only comes in tablet form, and you can (with a fair degree of co-operation from consultant and GP) write up a prescription in such a way that the supplier grinds up the tablets for you and makes them into a syrup.

What specific concerns/questions do you have?

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