Does this sound like epilepsy to you

[Krustykrab]

Hi frequent lurker first time post. Hope someone can help or maybe have suggestions or what to do next.

A month ago I walked into the dining room and found my son slumped over the table his whole body was trembling for about 20 seconds and was not aware of me or what was going on. Since then he has had another two similar episodes at school. He is also having on a regular basis (at least once a day sometime 3/4 a day) visual disturbances which he describes as hearing a strange noise like his blood rushing through his body then he's vision goes strange with blurry edges he also says things like walls floors furniture etc appear odd and slanted. He struggles to explain exactly what is happening during the visual issues but says it is roughly the same every time. He has become increasingly anxious and worried over the last month. Before this he has been healthy and happy.

He has had a MRI scan which was clear and an EEG which we don't have the results of.

The initial paediatrician we saw thought after discussion with the neurologist, that my son might have focal epilepsy with some generalised seizures. This week we had an appointment with the neurologist. The neurologist asked us to describe what had happened during the last month. my son struggled to do this the doctor kept interrupting him and asking him to repeat things, my son became very distressed and cried as he was experiencing visual issues as she was talking to him. I explained that he was not normally like this. The doctor said that my sons behaviour during the consultation and his explanation of events was evidence that he does not have epilepsy and that "children with seizures who come to her clinic never cry".

Her conclusion was that my son is suffering from extreme anxiety and stress caused by our home situation and probably has chronic fatigue syndrome. At no point did she ask my son or myself if he was stressed or anxious or unhappy at home or school.

He is not showing signs of fatigue was able to go for a 30min walk with no issues.

anyone had similar experience?

[WillBillHal]

Hi Krusty. DS is epileptic and has had seizures since he was 3. He has every sort known to man, so have seen the whole range! The vision/aura ones certainly sound like focal seizures - what a lot of rubbish from the neurologist! Have you looked into non epileptic seizures? DS has just started with these as well as his usual non epileptic ones - they are generally caused by anxiety or stress so I wonder if this is what the neurologist is thinking of?

Once the EEG is back, that should be a help although there are seizure types which don't always show.

Hope your neurologist is a bit more useful in the future - can you ask to see someone else? Our previous neuro once suggested that DS was putting on his seizures for attention

[ScrambledEggAndToast]

I've got epilepsy, both tonic clonic seizures and complex partial seizures. The first neurologist I had was rubbish, really didn't know what he was talking about. It was until I got my second one that we started getting somewhere. It may be that your current neurologist isn't very experienced. Ask for another opinion.

[NotDavidTennant]

It's ridiculous for the consultant to say "children with seizures who come to her clinic never cry". In your shoes I would consider making a complaint about her and I would definitely see what could be done about getting a second opinion.

[Krustykrab]

Thanks for replying, feel better knowing it's not just me that thinks she was unreasonable. I will definitely insist on a second opinion

[Krustykrab]

Will, I think the neurologist I saw also thinks ds is putting it on for attention.

[Clara66]

Krusty, just a thought, your ds isn't on any type of medication, is he? My dd had similar but was a side effect of meds.

Good luck to you

[Krustykrab]

Clara no he's not on any meds. Other than the last month he has been really healthy.

[NewMumSept2014]

Hi,
To me there are several different aspects to your son's story. Some of the things you describe sound like epilepsy and some sound slightly more atypical. However, obviously if your son is having recurrent stereotyped events, a diagnosis of epilepsy needs to be excluded. Sometimes this can be done just through hearing the description of the attacks, but sometimes more investigations are needed. Unless he had one of these attacks whilst on the EEG sometimes it is difficult to know either way.

By what you said the neurologist obviously feels he has non-epileptic attack disorder rather than seizures. She obviously didn't give a very good description of these, but they are attacks which can look very much like seizures, and affect your life in exactly the same way (unexpected attacks in which you can fall and hurt yourself etc). However they are not caused by abnormal electrical discharges in the brain in the same way that epilepsy is. Some patients with NEAD do have an underlying psychological cause/ "stress", but many do not and we do not know the cause for these. In either case these attacks are entirely out of the persons control and are not "put on" in any way. Clearly it is important to know if your sons diagnosis is epilepsy or NEAD as epilepsy responds to antiepileptic drugs and NEAD does not, but other treatment is available in the form of psychological therapy to help people recognise when the attacks are coming on and explore ways to prevent them (this can be really useful even if no underlying stress/ psychological cause is found).

I would ring the secretary and ask for another appointment with the neurologist to discuss her diagnosis further. If you are not satisfied with her opinion, of course ask for a second opinion, but you are entitled to know why she thinks this is the diagnosis.
It always helps if the doctor can see these events first hand so if you can, video one of them on your phone and take it along.
Feel free to ignore any/ all of the above. :)

[adoptmama]

Neurologists are nor infallible. We had one who characterized DDs seizures as normal sleep movements, despite video evidence, based on the fact that she was alert afterwards even though she ended up hospitalised. Much of what you describe sounds like seizure activity and needs further investigation. EEGs in particular can miss seizures if they are not originating near the surface of the brain. DD has had clear EEGs whilst having seizures during them. MRI can miss seizure too, and the signs can be missed by the person reading the MRI. I would push for a second opinion with a pediatric neurologists. What crap to say children never cry in a clinic. Bloody idiot shouldn't be near kids with an attitude like that. Keep a diary of what is happening and try to catch it on video too.