Absence epilepsy with fits / seizures - my 4 year old

Absence epilepsy with fits / seizures - my 4 year old

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DSLiverpool

Original Poster:

14,670 posts

201 months

Monday 21st April 2014
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Little spud had a fit in feb, ambulance, hozzy he was in a deep sleep but vital signs ok, once had woke up he was right as rain no memory of it and running about. Tests at alder hey where had had an "absence " whilst on camera. Test results show absence epilepsy but the fits are unusual, he is on 4ml of epilin since last week. He had another seizure today poor little man, no fit but very distressing - anyone been through this, were hoping he grows out of it or we can control it better.

dai1983

2,902 posts

148 months

Tuesday 22nd April 2014
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I had petit mal as a kid. My family said I would look normal but be unresponsive for brief periods. They got really worried when I walked into the path of a car during one episode.

I had the tests and was medicated for a few years. I grew out of it eventually and stopped the medication when I was about 12.

My 3 year old has also been diagnosed with it but hasn't had an absence for about 14 months. He's not on medication at this stage as they are not that severe. We were told to keep a record of any that occur and to return if things got worse.

DSLiverpool

Original Poster:

14,670 posts

201 months

Tuesday 22nd April 2014
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Cheers - did you ever fit or throw up during an episode?

dai1983

2,902 posts

148 months

Tuesday 22nd April 2014
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No I didn't or not that I can remember.

WinstonWolf

72,857 posts

238 months

Tuesday 22nd April 2014
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My daughter had petit mal as a child, she was on Epilim for a while but she too thankfully grew out of them.


Ozzie Dave

563 posts

247 months

Tuesday 22nd April 2014
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Hi There,
Yes our daughter started seizures at 4-5Y/O, first one we saw was a grand mal, lasted 4-5hrs! helicopter evac from the hospital to a specialist ped. teaching hospital not possible due to inability to transfer due to strength, so the brought the specialists to us. One of the most frightening days of our life. Tara is now 10 and is on Tegretol & Kepra after further testing showed she had upto 250 seizures a day, most being absent seizures, except when she is coming down with something like a cold or suchlike, then its usually a hospital trip.
We made the mistake of not pushing for an EEG because most seizures we put down to 'daydreaming' Do Not assume that, that assumption caused further damage I wont go into here.
When Tara comes around afterwards she is often confused and tired, vomits, and can have latent paralysis of the limbs and face, limbs are shortlived, the face can last for upto a week or two.
Rule 1 find a GOOD neurologist, one you feel happy with and does not treat you as a moron, secondly find a support group (even net based) of people going/been through this to give suggestions , not on medication but on specialists and questions to ask.
Above all learn how to deal with medically, its not a condition you want to get involved in unprepared.
Regards
Dave

DSLiverpool

Original Poster:

14,670 posts

201 months

Tuesday 22nd April 2014
quotequote all
Ozzie Dave said:
Hi There,
Yes our daughter started seizures at 4-5Y/O, first one we saw was a grand mal, lasted 4-5hrs! helicopter evac from the hospital to a specialist ped. teaching hospital not possible due to inability to transfer due to strength, so the brought the specialists to us. One of the most frightening days of our life. Tara is now 10 and is on Tegretol & Kepra after further testing showed she had upto 250 seizures a day, most being absent seizures, except when she is coming down with something like a cold or suchlike, then its usually a hospital trip.
We made the mistake of not pushing for an EEG because most seizures we put down to 'daydreaming' Do Not assume that, that assumption caused further damage I wont go into here.
When Tara comes around afterwards she is often confused and tired, vomits, and can have latent paralysis of the limbs and face, limbs are shortlived, the face can last for upto a week or two.
Rule 1 find a GOOD neurologist, one you feel happy with and does not treat you as a moron, secondly find a support group (even net based) of people going/been through this to give suggestions , not on medication but on specialists and questions to ask.
Above all learn how to deal with medically, its not a condition you want to get involved in unprepared.
Regards
Dave
Thanks for that it's very appreciated as we scrabble for info, we are lucky to be near two very good hospitals with child neuro units, Jamie is booked in for a MRI (he had an EEG after the first attack) ASAP - his last seizure was called a "focal" one it was horrible to witness!

Ozzie Dave

563 posts

247 months

Wednesday 23rd April 2014
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That sounds good, MRI & ECG are very good starts, know the focal ones well enough, Tara also suffers from laughing seizures, but after 3-4 hrs of laughing - its no laughing matter!. when sorting meds keep a close eye on everything, paranoia is healthy, soiling of bedclothes and wear can also be a giveaway of further instances overnight.

harry010

4,423 posts

186 months

Wednesday 23rd April 2014
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Can anyone give an idea as to what an EEG involves?

Our 15 month old son had a seizure on Good Friday and has to have a sleep deprived eeg as it cannot be explained - all tests normal, no temperature etc. W

DSLiverpool

Original Poster:

14,670 posts

201 months

Wednesday 23rd April 2014
quotequote all
harry010 said:
Can anyone give an idea as to what an EEG involves?

Our 15 month old son had a seizure on Good Friday and has to have a sleep deprived eeg as it cannot be explained - all tests normal, no temperature etc. W
Don't know what sleep deprived is but they put 15 electrodes on his head and filmed him doing some tests and blowing a windmill for 3 minutes - it took 25 mins in total and he didn't mind at all - didn't hurt but he is 4 - hope it goes well.

BlackVanDyke

9,932 posts

210 months

Wednesday 23rd April 2014
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This explains EEG etc better than I possibly could: https://www.epilepsy.org.uk/info/diagnosis/eeg-ele...

Sophie has absences but doesn't yet have a formal diagnosis of epilepsy - she hasn't been home long enough (adopted) to sort out all the specialists yet!

She often cries afterwards - I wonder if it's because she feels a bit disorientated and finds that scary?

FredClogs

14,041 posts

160 months

Wednesday 23rd April 2014
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My daughter had a couple of similar sounding episodes when she was 4, one serious looking fit and a couple of lesser fainting fits and absences she hasn't had one for a couple of years now though we never got put onto any medication, I think it's far more common than people realize with kids.

Ozzie Dave

563 posts

247 months

Wednesday 23rd April 2014
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Hi Harry,
Sleep deprived EEG is exactly what it says, a standard EEG but carried out when someone is very tired, its really just a fancy stress test. as for the electrodes to the head etc. they are not really a worry, more a concern is getting the glue/gunk out of their hair (especially stressful for parents of kids with long hair)!
The results are very useful to specialists and to allow things to be sorted. Again good diagnosis and testing is critical for seizure activity so good luck, you will be just as tired as the kid on the way in (they will keep one of you up all night also), so make sure you have someone not half asleep to drive in in the morning.