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eeg with spikes and abnormal activity

(19 Posts)
jess1975 Sat 29-Nov-14 13:08:49

My ds is 4.5 with asd and a very severe learning disability. I've been concerned for some time that he may be having some type of seizures but paed has always said jerky movements, spontaneous laughing etc are down to his autism probably. A few months ago he started waking during the night screaming, shrugging his shoulders and scratching his skin. He seemed awake and non-responsive. He's non verbal with extremely limited understanding of any language or instructions. At present we have no form of communication despite high levels of intervention at special school. As mentioned above he jerks a lot especially going over to sleep but it also seems to go on most of the night. Anyway we had an eeg and his paed telephoned yesterday to say there was some spikes particularly when drowsy and also abnormal activity in the background. He fell asleep in his buggy during the test with melatonin. The paed said she didn't really have much experience with reading eegs and will need to speak to someone else. She did sound quite concerned and said she would phone me Monday with the next course of action. I should mention all genetic testing to date has came back clear. Is there anyone with experience of eegs that could possibly offer some advice. I'm not shocked by the result as I've suspected it for some time. I think the paed was more shocked at the results as in her correspondence before results she says "I've told the parents that this test will probably come back clear". Do these results always indicate epilepsy? I also asked her did she think my ds would need medicated in view of the results and she said "yes, possibly". Anyone?

MommyToMyLittleStars Sat 29-Nov-14 23:32:50

I don't have any experience- but am interested to know what the paediatricians say- there is a rare epileptic condition which can present like autism (with speech regression).

zzzzz Sun 30-Nov-14 18:57:22

Epilepsy is often comorbid with ASD. It sounds like she sees seizure or post dictal brain patterns in his trace.

It sounds like you were right. Well done for keeping on it.

salondon Mon 01-Dec-14 04:00:48

Non verbal asd kids usually have silent/absence seizures. I would be interested in knowing what the doctors say as well.

I have been reading about high fat diets helping

zzzzz Mon 01-Dec-14 07:33:42

salandon I don't think it's "usually", but epilepsy is a relatively common disorder. The good news is that half of all children with epilepsy grow out if it. The ketogenic diet is a high fat, low carb diet that can be used like anti-seizure drugs, but it is only possible under incredibly close supervision by specialists. It wouldn't be possible or safe to try it without supervision and it is only recommended for very hard to treat severe epilepsy.

Housesoftheholy Mon 01-Dec-14 15:06:55

Sorry if I'm off topic here at all op i am confused about readings on eegs too. My ds is diagnosed with epilepsy and a recent eeg has come back abnormal. The doctor says he has the same type of activity going on as when I could see him having seizures (he's on meds) Yet I can't see them.

It's so confusing! zzzzz can you tell me what post dictal brain patterns are?

zzzzz Mon 01-Dec-14 15:13:26

Don't quote me because I do a lot of sticking my fingers in my ears and singing "la la la" about that part of our lives (my super hard to manage dd with epilepsy is doing much better these day <touching forests of wood>).

Post dictal is the stage after seizure and lasts many hours (12????) it's the sludgey, headachey, sleepy bit. When you have an EEG it measures the electrical activity now. If you have a seizure the trace goes crazy, if you have recently had a seizure the trace is changed, and then slowly reverts back to normal (or your normal).

jess1975 Mon 01-Dec-14 20:31:01

Hi All

As promised my son's paediatrician telephoned today. She chatted to the Consultant who wants to see him and she has also arranged some tests. She said the EEG showed nocturnal seizures. We have to have an ECG which apparently is routine before epilepsy medication is given. We've also to have an MRI under general anaesthetic. I'm not shocked just very said my wee man.

zzzzz Mon 01-Dec-14 20:40:47

You might find medication is really life changing for him, in a GOOD way.

Housesoftheholy Mon 01-Dec-14 20:43:24

Thanks zzzzz, I'm glad your dc is doing better. Is there the same sort of thing for small frequent seizures like absences or focal seizures I wonder? I know they said to me if ds's absences are visible for 8-10 secs then he is still not fully concious for at least another 30 secs either side of that.

I'm sorry you now have seizures, and more tests to deal with too jess

If he is having nocturnal seizures then they will be having a knock on effect on many aspects of development so it will be really positive if they can bring that under control. thanks

zzzzz Mon 01-Dec-14 20:49:30

I believe absence seizures and small frequent seizures are better catered for drug-wise (ie there are many more meds to choose from). It's all about grinding the drug that works.

WillkommenBienvenue Mon 01-Dec-14 20:53:47

epilepsy action has a good forum where you will find people with knowledgeable advice.

I would say he needs a neurologist to read the EEG, not a paediatrician?

It might explain an awful lot about his behaviour and presentation of the autism.

jess1975 Mon 01-Dec-14 21:16:49

Thanks will take a look on Epilepsy Action. Apparently the Consultant who read it today has a special interest in epilepsy but I am wondering do we need to see a neurologist. Apparently there is a long waiting list for the MRI but hopefully not the ECG.

WillkommenBienvenue Mon 01-Dec-14 22:21:57

You should always see a neurologist for epilepsy. A paediatrician won't have enough knowledge. Try and get a referral to Great Ormond St if you can. Worth the trip even if you are a long way away.

zzzzz Mon 01-Dec-14 23:47:08

Consultant with a special interest is good. I found the neurosurgeon alarming (understatement). Great ormand street have several arms out into different hospitals and I would expect them to be refered to if necessary. Bristol Children's Hospital was very efficient for us.

salondon Tue 02-Dec-14 05:18:56

Jess - I am sorry to hear that. I hope he gets the help

Did they say these are clinical or silent seizures/absences?

jess1975 Wed 03-Dec-14 21:55:04

The only thing she said was that it was showing nocturnal seizures. He has his ECG and MRI next week and appointment with the consultant the following week. Will keep you posted.

Na1play Tue 13-Jan-15 14:48:54

Hi Jess, my son had the same test done with the same results. He has been diagnosed with migralepsy. It's migraines with aura, so he had no pain but did have visual disturbances. Just as he fell asleep he would have myoclonic jerks that woke him up which resulted in chronic sleep deprivation. He is on epilepsy medication and melatonin as he couldn't produce this naturally and we have seen a huge improvement. X

jess1975 Wed 14-Jan-15 20:46:29

Thanks Na1play that's very interesting and will look into this. Since posting we have had results of MRI which were normal and no focal abnormality. I also now have the correct results of the EEG which were"shows spike and wave over right temporal, parietal and occipital regions increasing in frequency during drowsiness".

After a long consultation with a consultant (not a neurologist but has an expertise in epilepsy) it was decided not to diagnose him at the minute. After a long apt and reviewing videos she said that there was no clear evidence of seizure activity. She also said there was some evidence that could potentially be seizure activity but that these were very brief and not sustained. Due to his neurological disability he clearly is at an increased risk of seizures and so she will seek a second opinion from paediatric neurology with the view to maybe arranging a 24 hr eeg with video.

Apparently it is not unusual to have an abnormal EEG but not have epilepsy. It's confusing! Happy to wait on second opinion (waiting list 9 months) as don't want to give my ds meds he may not need.

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