Complex febrile convulsions

[ChocOrange05]

Does anyone have any experience of complex febrile convulsions?

DS has had 3 in the last 6 months:

1. 13mo - 20 mins long (cause by pneumonia) given IV Lorazepam which made him stop convulsing, and stop breathing, was intubated for 12 hours, back home after 3 days

2. 15mo - 3 mins long, came out of it himself, caused by bacterial chest infection.

3. 18mo (yesterday) 30 mins long, given Diazepam suppository which stopped it but took a further 40 mins to come round.

He is fine now, just a bit under the weather. But I can't find much information on recurrent complex FCs (by complex, I mean long ones). I know FC's are fairly common but long ones are less so.

Has anyone else experienced these or know anything (not easily found on google!) I am keen to get more information.

BTW - DS has had an EEG and CAT scan which came up fine so they have ruled out epilepsy although I will be making another appointment with the specialist.

TIA!

My dd has febrile convulsions. About 6 in a year. Terrifying and once diazapam had to be used. Don't know much about complex ones, but wanted to say I understand how frightening they are. My dds were caused by and large by ear infections that caused her temp to spike v quickly. Another was by a v nasty stomach bug. Thankfully she is now 4 and appears to have grown out of them. I hope you get to the bottom of things and your dc grows out of them soon.

ds2 suffers from convulsion has now had at least 6 last one lasted 20 minutes that is the one i have found most worrying as they could not find any signs of infection so mystery what caused it.

DS is 14 and had his last febrile convulsion a year ago (incidently was caused by pneumonia), which I suspect was a complex one, but I wasn't there. He fitted at school, didn't come round and fitted again when the ambulance arrived. He has been having febrile convulsions since the age of 15 months and has probably 20 over the years, but the majority have been a few minutes, although he has had more than one at a time.

Since the age of 6 he had two the week of his 6th birthday then another at 8.5, then 10.5 then again 13.5.
He was investigated for epilepsy when he was 9 and again since the last one, but this has been clear.

We have a long family history of fcs past 6, usually up to the age of 10 so DS has now been diagnosed with GEFS+ which is a newly discovered syndrome.

He always takes a good half hour to come round from them and then sleeps for hours afterwards.

I meant to say it is very difficult to find out anything about unusual febrile convulsions, most doctors haven't heard of febrile convulsions past 6 let alone a family history like mine. The last paediatitrician who say DS when he has pneumonia told me it couldn't possible be a febrile convulsion, and neither my sister or my mum couldn't have had one at 10 either.

Last year was the first time I came across GEFS+ on the internet.

Thanks guys - as you say bruffin it is very difficult to find information about complex (or Atypical) FC's - all I know is that FC's occur in 3% of children and of those 3%, 4 in 20 are complex - so 0.6%, quite rare and DS has had 2 now. Yesterday's temp was only 37.1 at its peak so even more confusing as it doesn't appear to be Febrile (others were 38 degrees).

Its such a scary thing, we are lucky though that DS seems to recover well but its difficult not knowing if or when another will happen.

It tends to be the temperature shooting up rapidly that causes the convulsion, not the actual temperature itself IYSWIM.
The febrile convulsion is usually the first sign my DCs are ill. DD now 12 had 4 between the ages of 3 and 4 but hasn't had anymore.

Same here bruffin, DS has very minor symptoms before and then perhaps a bit quiet beforehand. Its just a bit scary as there is no real information except that seizures over 30 mins could cause brain damage. I know it is rare but as DS has now had 2 long ones I really want to know why!

Have you been given rectal diazepam on prescription? I was given them but thankfully never had to use them. Last time DS was given diazipam by drip.

Just found some articles linking zinc and iron deficiencies have been linked to febrile convulsions. May be worth looking into

Thanks bruffin will look into it. We are trying to get an appointment with the consultant and get some rectal diazepam on prescription too.