HFA and absent moments or absence seizures?

[tacal]

Hi, ds who is 4.9 (HFA) has an appointment with a neurologist next week regarding possible absence seizures. When ds was going through a really anxious time earlier in the year I saw lots of moments which could possibly have been an absence seizure. There were also a few times with rolled or flickering eyes.

Since ds has been less anxious and much happier I have not seen many 'absence' type moments. A few times he has had a blank look on his face and bubbles come out his mouth but this has only been a few times over the past four weeks. I have not seen any eye rolling or flickering for months.

Do you think that because his absent moments and eye rolling/flickering happen more often when he is anxious it is more likely to be sensory or autism related rather than a seizure?

I would be grateful for any advice you could give me as I want to be prepared for any questions the neurologist will ask me.

Thank you.

DS2 was also suspected of absence seizures. There are useful videos on YouTube of parents filming absences and also on how to trigger an absence seizure - sounds awful but simply involves the child continually blowing a paper towel held close to their mouth/face.

So glad I read this thread - I have often described this, as my 4.10 year old (ASD/Asperger's) does this but have never heard of 'absence seizures'. I described him as seeming to be possessed suddenly as he rolls his eyes and appears to disappear briefly. I will look at this on YouTube. Thanks.

OMG, I have just watched the videos on YouTube and this is exactly what he does, or in similar form. Thank you so much KEEPONKEEPINGON1 for that and TACAL for starting this thread. x

DS did this a lot from about 3.5 years, his montessori teachers noticed it first and then I did too. He had an EEG done and nothing showed up but the neurologist also noticed an 'absence' when we were with her but between her and the consultant neurologist we decided it would be too difficult for DS to go through it again - ds was having a bad day and we'd been waiting for 4 hours to see them. We haven't noticed them really much since.

Hi all, thank you very much for your replies.

When I found out about absence seizures earlier in the year I watched the videos on YouTube and was pretty sure that is what was happening to ds. I just wonder why I have not noticed them so much recently.

APMom - is your ds diagnosed as having seizures? Does a diagnosis matter if they are not causing any problems?

Keepon - I dont like the thought of trying to trigger one but will think about trying it, then I would know for sure. I only have one video of ds having an absent moment, it has been so hard to try to video him because they are so quick!

Sophj - I found out about them because I was really worried about one of my ds's eye rolling episodes, so I googled what had happened and found absence seizures. It was a bit of a shock. I think it could affect his learning at school so I really want to know for sure. The referral to neurology was made end of July so the appointment has come up quite quickly. Are you going to see your gp about your ds?

dd just had a 3 day video EEG to try and diagnose absence seizures. She has other types of epilepsy too. The school report she zones out for 30 seconds and then 'comes too' but we've never seen one at home. She cant trigger them the usual way as she has cerebral palsy but apparently they are hard to diagnose even in walking/talking children hence the 3 day video EEG. We are waiting on the results.. She also has HFA as well as the brain injury.
My feeling is if they arent causing issues (and at 5 a day the arent) I'm not adding to her medication as epilepsy drugs have horrible side effects on behaviour and learning.

EP suggested investigating absence seizures because sometimes DS2 did not respond to his name. However he does not have absences at break time - seizures are not context dependent.

I can understand not wanting to trigger but it is not possible to trigger something that is not there - it is a little like triggering retained reflexes.

Rapid blinking of eyes or spacing or zoning out means absence seizures for sure. The only way to confirm it medically is through a 24 hour ambulatory EEG and that report to be seen by the neurologist and then shown to your Dan/maps doctor for proper drugs...not anti seizure drugs that may space out the child more

Thank you for your replies.

twistyfeet - I would feel the same about not wanting to give epilepsy medication. I hope everything goes well with getting the results from the EEG.

KeepOnKeepingON! - I tried him blowing on a paper towel but felt very nervous about it so stopped. Will try again tomorrow. Thank you for the suggestion.

Zumbaleena - he definitely zones out and does not respond to touch or shouting his name while zoned out. So it does seem likely that he is having absence seizures. The eye rolling looked like a seizure but not sure the eye flickering was. Hopefully the neurologist will take my concerns seriously. Thanks for the info.

Tacal, my ds wasn't diagnosed with absence seizures. None showed up during the 3-4 hour waking and sleep test and as I said he had a otl meltdown during the follow up consultation. We were on a waiting list with the early intervention team for assessment and because of how he reacted that day we were bumped up the list and he got his autism diagnosis 3 months later at age 4&3 mths. The neurologist asked me what I was concerned about that day and I said I figured ds has autism and he totally agreed. I think the absences were just ds shutting out the world.

Hi APMom, the doctor who gave my ds his Autism diagnosis said she thought that ds might be 'opting to remove himself from that moment' rather than him having a seizure. Which sounds similar to what you are saying. I am hopeful that this is what it is rather than seizures. Thank you.

Twistyfeet - was it an ambulatory EEG? And if you don't mind sharing, where was it done?

Ds1 was referred back to his Paediatrician a couple of years ago for suspected absences because he had been 'zoning out' or 'switching off' both at home and at school.

The Paediatrician got him to do the paper blowing test and said he didn't think it was absences, but rather shutting down and shutting the world out. They seemed to happen at school (so when he was stressed) and if he got over-stimulated by a computer game (a particular driving/rally game was when ds2 had reported seeing ds1 do it). He also had a couple of strange episodes when he was with his best friend and stopped and froze mid-conversation while they were walking across the playground. The only other worrying sign was that he had some sort of drop attack, when he collapsed into the lap of the girl sitting next to him at the end of a maths lesson and was totally unaware it had happened until the other children told him.

We were dubious about the Paed not wanting to investigate further, but it seems he was right. The episodes reduced in line with his stress levels (they occurred during his toughest year) and I we only ever notice him zone out now if his stress levels are at their upper limits.

He was 9 when he saw the Paed about it and is 11 now.

Hi Moosemama, you must have been really worried about your ds especially after the drop attack. My ds's zoning out was very frequent when he was stressed about everything and now he is relaxed and happy I dont notice it so much. So maybe my ds is not having absence seizures. It will be interesting to see what the neurologist says tomorrow. Thank you for sharing your experiences with me.

epilepsy.med.nyu.edu/epilepsy/epilesy-and-children-/-causes/epilepsy-syndromes-children/childhood-absence-epilepsy

Thank you zumbaleena, the link is very useful. Not sure what to think, ds does look like he has absence seizures but 'shutting the world out' also seems quite likely too. I feel a bit confused about it all. And worried I will never really know.

do you why it is "shutting out the world"? :-)

he shuts out cos' he is having absence seizures....there is no other explanation. go to your neuro and press for an EEG. that is the ONLY way to know if there is a seizure or no. rest are excuses to turn you away

this is what I am trying to understand. Is shutting out the world an absence seizure?

thank you for your advice regarding this, zumbaleena. I will take as much evidence as I can to the neuro and press for an EEG.

Salondon, yes it was a 'ambulatory EEG'. I have no idea why they call it that because you cant go anywhere! (not that dd can walk or move anyhow as she has CP). She was wired up as normal but to a nhuge machine with a video camera for 3 days and kept in hospital. The video pointed at her at all times and we had to note down when she was moved/fed/screaming/sleeping and press a button if she did something we thought might be a seizure or an absence. As it was she only zoned out once, when the music therapist woman came round.
It is incredibly boring and dd spent 99% of the time sat on dh's lap being read to. She is too visually impaired to watch TV. The technician had to keep coming back to restick the electrodes on her head.
Her paediatrician reckons she is zoning out and says it is very common with brain injury/ASD but because the school was in such a flap the 3 day EEG was done to rule out absences as they are difficult to diagnose and she did have severe epilepsy (lennox-gastaut syndrome) which is cirrently under control on keppra and the ketogenic diet.

I am glad you are over and done with twistyfeet. I hope you get some useful information out of the EEG.

I am considering one for my daughter(she 'zones out' like Zumba explained), and was wondering if ambulatory was really what is says on the tin. So no then.. humm..

tacal - I am going to speak to the GP about this, if nothing else, just to be sure I'm understanding it right. It always seemed harmless - a moment of 'absence', as it were but would like to have it looked at, just in case.

sophj - I hope your GP is helpful. I think absence seizures are harmless and usually children will outgrow them. Which does make me wonder why I need a diagnosis. I am worried that if he does have them it could cause problems at school and maybe during activities such as swimming and climbing. Let me know how you get on and if you find out anything useful.

neuro says he feels sure from what I said that ds is having 'removing himself from the world' moments and not epileptic seizures. He said he will not be doing any further tests.

He seemed very sure that his is what is happening to ds, so at the moment I am going to accept this to be the case rather than push for tests.

I feel happier about it now.