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Experience with absence seizures?

(31 Posts)
piglettsmummy Fri 19-Oct-12 22:03:01

My daughters nurse came today and dropped the bombshell that last time he visited e witnessed her having an absence seizure, and that it might account fr why her breathing durin the day is unpredictable. I'm gutted especially as we're worried about her development and also that it cannot account for her night time apneas! Anyone else have to deal with these?? Shes been like It since birth but now aged two I've just found out!! I swear it's not our week this week!

Dev9aug Fri 19-Oct-12 22:26:13

Really sorry to hear that. I have no experience of absence seizures but I feel for you. It is not right that little children have to suffer so much. I sincerely hope things get better for you.

zzzzz Fri 19-Oct-12 22:29:02

My dd3 is now 5 and has epilepsy.

I don't quite understand your post. Seizures are very common at night and would cause changes in breathing.

This doesn't have to be bad news. Absence seizures do cause delay, but I if ou can find. Medication that deals with them she may be much better placed to learn.

BeeMom Sat 20-Oct-12 04:53:36

The one positive in this is that absence seizures (as long as there is no underlying pathology) rarely continue into adulthood. A true absence seizure wouldn't likely cause breathing issues, but a complex partial or atypical absence might... it is important to figure out which kind (if any) of seizure she is having because different medications affect different types of seizures. In fact, some meds can make different kinds of fits worse.

I promise you, while epilepsy seems very scary, it is not the end of the world, and MANY children outgrow it.

SallyBear Sat 20-Oct-12 08:02:13

Piglettsmummy. If the nurse saw the absence seisure them it will need to be followed up. I wonder if you need to see a Neurophysiologist, for further monitoring investigation?

piglettsmummy Sat 20-Oct-12 22:30:44

Hi zzzz sorry I didn't clarify, she had been suspected epileptic for a while but. A 3 day eg ruled out the condition. However about 2 months ago her ventilation nurse cam to see us. We had been trying to explain my daughters 'blank spells' to the doctors for a long time. This is wat drew us to her breathig difficulties when she was just 2 days old. While he visited she had a 'blank spell' and I said " quick look, that's it happening!" he was very interested but said no more bout it. But when he visited Friday he explained that he believes it was an absence seizure. Between his visit shed had a major one where she blanked out continued to breathe but went blue while et saturations stayed good ( oxygen levels) we were confused and didn't react as w were in shock. We have since been told to call an ambulance if this happens again. During the smaller episodes as goes pale on the occassions were she also stops breathing. To the others that replied Thankyou or your support we have been told that the certain pattern o her breathing at night rules out in itself absence seizure throughout the night. At Herbert she was having 735 apneas a night and after question her nurse saying she can't have had 735 apneas a night he told me no that's got a different cause to it. Be has explained that despite her symptoms being similar there causes are different. They all relate to messages getting cross wired or interupted however only they daytime episodes which are completely different to her night Time episodes are caused possibly by epilepsy. We see neuro on 8th for her development doin wud assume this will be discussed again. I am interested to know how epilepsy hinders development if anyone can tell me ? She cannot talk as well as most children her age but we understand her so HV isn't concerned, she cannot use any cutlery she can only crawl upstairs and cannot come down at all. She cannot used things like puzzles/shape sorters and doesn't understand (despite being shown many times) how to use a trike x

SallyBear Sat 20-Oct-12 22:38:59

Can you self refer to Portage for the play therapy side of things. I'm glad that you are seeing the neurologist.

zzzzz Sat 20-Oct-12 22:55:30

pigglet I can tell you what I know, but that is based on my daughters epilepsy. Dd3 has very difficult to control seizures and has been hospitalised quite a few times. She is now well controlled and part from being quite anxious and mute outside the home making good progress at school.

When not medicated she has multiple seizures every couple of hours. She has seizures in her sleep and I don't quite understand why if your daughters sats are dropping in the night and she is experienceing seizures during the day nocturnal seizures have been ruled out? It may not be the whole storey but might be some of it.

Certainly I would read about "benign rolandic epilepsy", "infantile spasm", and "absence seizures". Utube is useful to see what these things look like (but heart rending, so be prepared to be very upset).

Changes in breathing are what alerts me to dd's seizures. Normally in the middle of the night. She goes blue and sats drop briefly, we use oxygen when in hospital but not at home.

Video is your friend when describing seizure activity. Try to video and show Dr.
Call an ambulance if at all worried, especially for episodes lasting more than 3 mins, 999 and blue lights.

Absence seizures can make learning really hard. Imagine experienceing the world in jerky little bits ( think iPlayer with rubbish bandwidth). Only medication can really help, but many have quite noticeable side effects.

piglettsmummy Sat 20-Oct-12 22:56:03

Hi Sallybear what is portage?

piglettsmummy Sat 20-Oct-12 23:21:13

Thankyou zzzzz. If you read about a hypventilation syndrome called CCHS she is very similar to this. During sleep she has many apneas and the rest of her breathig is shallow/ inadequate. And her co2 levels are often into the mid 50's. I'm guessing they ruled epilepsy out when she had her 3day EEG. She had the chest and abdominal bands around her during the entire EEG so If She did stop breathing then they wud be able I relate to the eeg findings at the correct time but despite continuingly having apneas she had not epileptic activity? I have had a brief look at absence seizures but will check the other two ones out. I don't think I am brave enuf to see the utube videos!! I do sob at the slightest things!! We will definatly be calling an ambulance next time as her major one last about 10 minutes, but as I was not prepare/trained to recognise them I took note that her O2 levels were fine on her Sats monitor but did phone for advice. I've been told short absence seizures are fine and the 'kindest' se can have as she will slip in and out of them without causing her much distress, but obviously the long ones that cause her colour I go grey/blue I am to phone 999 immediately even if she is breathing. X

zzzzz Sat 20-Oct-12 23:36:28

10mins is a seriously long seizure.

To give you some idea. Dds longest seizure was about 2 minutes. Mine has clusters of seizures, so you add up the seizure times in an hour. We can have 15 or more. At this level of activity we were in hospital. The first time for 57 days with a transfer to the children's hospital or more agressive intervention.

More than 5 mins gives a very real chance of brain damage and/or statis.

EEG confirms there was no epileptic activity during the test. So it needs to be repeated to check you weren't just lucky/unlucky and there was no seizure in that 3 days.

Ghouljamaflip Sat 20-Oct-12 23:41:15

Hi my ds (5) has a form of epilepsy - no name but he was dx'd when he was 3. He has had absense siezures, myoclonic jerks and one tonic clonic fit which landed him in hospital.

I say "had" as he is well medicated at the moment and we have seen no fits for over 12 months grin

He was a terrible sleeper pre medication and a sleep induced eeg showed multiple fits while he was sleeping, none of which were apparent in RL so were sort of sub-fits iyswim.

Re development - he has a SLI and is currently about 2 years behind with his speech but is making fantastic progress (had no speech and used only Makaton 18 mths ago). He is now able to form sentences correctly and rarely uses signing.

He is Yr1 now and is holding his own in school although he is still behind (approx 12 mths). Best thing is hes happy and learning.

I have raised the question as to whether the epilepsy has caused the learning delay or whether the learning delay and the epilepsy are a symptom of a problem elsewhere with his pead only to be told that we may never know!

One thing I was told that should an absence occur when the brain is trying to "log" a new experience or consolidate new information, then a "gap" will appear in that info pathway which might mean that the thing hasn't been learnt properly. Its almost like falling asleep in class and missing half the lesson! Even small "zone outs" can have an effect.

The good news with us is that if DS stays fit free for another 8 mths and has clear eegs then we will be starting to wean him off his meds grin

piglettsmummy Sat 20-Oct-12 23:51:47

Ano zzzzz that's why I still debate whether it was something else. She wet pale and blank which can be common for her but then the next minute she had blue lips. The whole process from blanking out to coming round which she was nt happy as u can imagine was 10mins approximately. Obviously as we didn't no what it was we hoped maybe it was a trick of light with her monitor reading correctly. At this time no one and mentioned absence seizures and I though that a seizure was jerky movements obviously now I do and hope that it never happens again. Thankfully no harm was done but I no that word is in te pipeline for her to have repeated EEG x

piglettsmummy Sat 20-Oct-12 23:56:15

Ghouljamaflip that's great news!! I hope he can been weaned off his mess soon! Out of curiosity what meds is he on? My daughter takes daily doses of acetazolomide which has been been proven to help respiratory control butbid also an epileptic drug? X

SallyBear Sun 21-Oct-12 11:03:44

Portage is available to 0-3 for children with special needs. The visits are at home and they do a type of educational play therapy. You can self refer. here and all about Portage

Ghouljamaflip Sun 21-Oct-12 12:34:39

Ds is on Sodium Valproate (Epilim). we were lucky in that he responded to the first drug they tried.

One person I did find really helpful was our epilepsy nurse Dawn who has been happy to answer any questions we had no matter how stupid. She also came out to school to make sure they knew how to deal with any fit ds may have and also how to recognize the warnings signs.

LateDeveloper Sun 21-Oct-12 20:56:07

Ds has had absence seizures for at least three years but they sound vv different to what your dd has. They last around 5secs, his eyes flicker and he pauses. Doesn't sound like much but he has 100s a day so he misses out on lots.

We try to manage the condition with lamitrogine but getting the dose right is tricky.

Not sure a nurse can diagnose absence seizures of sight (not saying she is wrong either!). I'd try to get video evidence and show to paed.

piglettsmummy Sun 21-Oct-12 21:13:32

Late developer I questioned her nurse a lot about it as I don't understand why they assume absence seizures a 72hr EEG was clear and I assumed absence seizures were extremely often? She has like 2-4 a day. When she was a baby and I'm talking like days old she would do it loads like every few minutes. But as shes gotten older they haven't been so often? We don't see a dc until December so will have to talk to them about it. I think because they don't no what's wrong wih her hey just seem to pluck ideas from no where and it irritates me :/!! X

LateDeveloper Sun 21-Oct-12 21:49:49

I wouldn't wait till December - what if nurse is wrong and this is a more serious type of seizure of something else all together. Can you call the secretary and ask the consultant to ring you back as you have serious concerns or go to your gp for a referral? And yes do call an ambulance/ go striaght to a&eif they happen again

I hope I'm not worrying you unnecessarily but I know what it is like -when you are under a consultant for one thing there is a tendency to wait to see them but any other child presenting with those symptoms would get much more urgent intervention.

Not all seizure activity shows on an eeg (in my limited personal experience - I'm a mum not an expert) or this might be a sign that there is something else happening that is not epilepsy related but is needing investigation.

zzzzz Sun 21-Oct-12 22:36:52

piglet video and GP, would be my plan, with a view to being referred in the very neer future.

I agree that diagnosis by eye of nurse is not great.

IMO better to be over anxious and be told to chill than to miss something.

piglettsmummy Mon 22-Oct-12 13:53:34

Thankyou both for all your advice. I will make a gp appointment as we have a lot f concerns for her which are not getting sorted. I am actually going into town as I type this to transfer doctor surgeries as our current one moans at every medication they have to prescribe for her !! And just now she's had another starring episode only a very short one (7seconds ish) She tilts her head downwards slightly of that helps but stares straight ahead? If that helps at all? X

zzzzz Mon 22-Oct-12 14:14:48

Time to start a fit chart if you don't already have one.

Get a notebook, write the following headings along the top of each page and rule lines in between. Keep a pen with it at all times.

Date, time, duration, what happened first (eg looked to left, or smacking lips together), what happened just before the episode (eg she was tired and drowsy, or was eating breakfast), general description of episode.

They look for patterns and triggers, so first action in episode can give a clue to where in the brain it is starting, stimulus can help them and description help them decide what type of seizures (if any) she is having. All this information let's them have a better guess at which medication will help.

I find it useful to keep NHS number, consults names, emergency numbers, present meds, and how to resuscitate in the back of the book.

As I've said to other people on here. I am totally convinced that the more effort I make with the book the less likely I am to need it. hmm. Pathetic I know!

piglettsmummy Mon 22-Oct-12 17:28:13

Thankyou zzzzz I didn't think of that!! I know how you feel ! When kaitlyn was a baby we made loads of desaturation charts etc all over her bedroom wall and our CPR leaflet and medication chart and I never used them lol! But I will defo give it a try we already have a book for behaviour and find it useful Thankyou smile x

LateDeveloper Mon 22-Oct-12 22:01:43

Come back and let us know how you get on with gp. If no joy the do call her consultant and try and speak to him or her about your concerns. They honestly expect parents to do this.

LateDeveloper Mon 22-Oct-12 22:01:43

Come back and let us know how you get on with gp. If no joy the do call her consultant and try and speak to him or her about your concerns. They honestly expect parents to do this.

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