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Febrile convulsions/epilepsy.

• Message 1. 

  Posted by cardinalsins (U14257989) on Wednesday, 28th December 2011

  Some of you may know who I am on another log in but I thought I'd post on this one as I'm not so well known as cardinalsins.
  
  Anyway .....a friend of mine's little girl of eight and a half has been having febrile convulsions since she was about three, she has had nine in all, some have been relatively mild and two that have been more severe, the most recent severe one being on boxing day when she had a number (at least two) within a three hour period. The only positive thing is the girl doesn't remember them but as you can imagine it is terrifying and worrying for the parents.
  
  Originally it seemed to be that the convulsions were triggered by her having a temperature when she was ill with a cold or fever but recently it seems that it is when she overheats, the last couple being when she was running around playing.
  
  The advice from the hospital was to give her painkillers to get her temperature down and that she would grow out of them by four, then five, six etc...you get the picture, now my friend has a valium preparation that she should give the child if she develops a fit but it is quite a dangerous procedure especially due to any chance of giving her too much by mistake.
  
  We still hope that she will grow out of them but now the Hospital are thinking of prescribing anti epilepsy drugs, an MRI Scan seems to have ruled out a brain tumour.
  
  The fits manifest themselves by the girl going white, becoming listless before passing out, there is some shaking associated with it too, When she recovers she is her usual chirpy self and remembers nothing about it.
  
  So...what I am after is any experience or advice on the subject from anyone who has experienced similar with friends or relations.
  
  I have the permission of the parent to post this.
  
  Thanks.
  
  
  
  

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• Message 2

  , in reply to message 1.

  Posted by Karmic-ish Kris (U14642774) on Wednesday, 28th December 2011

  Hi cardinal,
  
  One of my sons had febrile convulsions from the age of six months until the age of 4 and a half. His always manifested when he had a very high temp - I remember that he would be too hot almost to touch - and I personally don't remember him turning 'white' at any stage (ie, he was often red with high fever).
  
  This, to me, sounds far more as though your friend's girl is having an epileptic seizure. I remember being told that this did happen to a number of children who experienced febrile convulsions...
  
  I'm afraid I don't have any medical knowledge but hopefully someone who does will come along soon.
  
  Warmest wishes,
  
  kris

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• Message 3

  , in reply to message 1.

  Posted by La Bez (U14670366) on Wednesday, 28th December 2011

  Speaking as an ex-paediatric nurse I would also say that this now sounds more like epilepsy. Generally by 8 she should have outgrown febrile convulsions as she should have better control of her temperature regulation by that age. Especially as the last two occasions have not involved a fever. I would hope that the hospital have carried out other tests as well as the MRI - EEGs mainly. It does sound as if she needs to be on proper epileptic drugs than relying on control by the valium suspension
  
  I wish her and her parents all the best, I know it's not a diagnosis that anyone wants to be faced with - there is still a lot of fear & lack of understanding surrounding epilepsy - but these days it can be very well controlled.

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• Message 4

  , in reply to message 3.

  Posted by La Bez (U14670366) on Wednesday, 28th December 2011

  Damn flea - I was also going to say that the episodes as you describe them also sound more like a "classic" epileptic fit than a febrile convulsion

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• Message 5

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  Posted by superjan3 (U6523409) on Wednesday, 28th December 2011

  It might be a good idea to get in touch with Epilepsy Action (for England and Wales) I belong to a local group but the national organisation has a helpline and informative leaflets.
  My thoughts are with this little girl and her family and friends.
  

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• Message 6

  , in reply to message 3.

  Posted by cardinalsins (U14257989) on Wednesday, 28th December 2011

  It has been dawning upon us as time has gone by that it may be epilepsy proper and this recent episode has intensified that feeling and the desire for something to be done about it, so far the perception (from us) has been that the doctors responsible have been a little slow on the uptake but it may be that they have been waiting to see what happens too but eight and a half is beginning very much to look too old for febrile convulsions.
  
  She has had an EEG but as I recall it showed nothing particularly awry.
  
  Thanks both of you for your input, Kris and La Bez, it's a frightening time and all information is gratefully received.
  
  It hasn't been ideal at the Hospital either as an aged Consultant has just retired and it seems without any replacement.

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• Message 7

  , in reply to message 4.

  Posted by cardinalsins (U14257989) on Wednesday, 28th December 2011

  "I was also going to say that the episodes as you describe them also sound more like a "classic" epileptic fit than a febrile convulsion"
  
  It's looking more like that I agree.
  
  I'll pass on Epilepsy Action (for England and Wales) superjan, thanks too.

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• Message 8

  , in reply to message 7.

  Posted by savannahlady (U2362903) on Wednesday, 28th December 2011

  I would also agree with the view that this sounds very much like classic epilepsy. My middle sister had them as a child - she grew out of them by the time she was in her early twenties, but we were all taught what they were and what to do. Hers began like your friends child, but developed into the grand mal type of full blown fits which are very disturbing to see if you have not witnessed them before.
  
  I would get your friend to have a second opinion soonest and, as others have said, get onto Epilepsy Action.
  
  Hope things improve for her - it really is important to get the right treatment soon.
  
  Savvie

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• Message 9

  , in reply to message 8.

  Posted by cardinalsins (U14257989) on Wednesday, 28th December 2011

  "My middle sister had them as a child - she grew out of them by the time she was in her early twenties"
  
  This is what I'm hoping and could deduce that taking anti epilepsy drugs might help reduce their occurrence enough that she can stop taking medication at a later date.
  
  I hadn't thought of a second opinion but now you say it, it's not a bad idea, especially as we are a little unsure as to how she's being treated at our present hospital.
  
  Thanks Savvie, I said to my friend that I would get sensible and caring advice should I post in ML about it.

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• Message 10

  , in reply to message 9.

  Posted by La Bez (U14670366) on Thursday, 29th December 2011

  It does sound as though they have maybe taken too "cautious" an approach. I think a second opinion is definitely a good idea, especially as it sounds as if the paediatric unit is in something of a state of flux at the moment with the loss of the consultant who hasn't been replaced. Has she been seen by a paediatric neurologist yet or is she still under the care of the general paediatricians? If it does turn out to be epilepsy then, ideally, she should be under the care of a specialist. Your friend should ask for a referral to the neurology department at their nearest children's hospital

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• Message 11

  , in reply to message 10.

  Posted by cardinalsins (U14257989) on Thursday, 29th December 2011

  I have a lot of personal experience with the NHS so I'm surprised and a little taken aback that they seem to be taking their time over this but I spoke to my mate this morning and advised her to talk to her GP without the girl present to air her grievances and ask if she could be seen at another hospital or at least to press home how serious an issue this is.
  
  She has been seen by various people including the consultant that has just retired but we feel that there doesn't seem to be much joined up thinking involved. It just seems a bit shabby and questions aren't answered in satisfactory way etc (although I do understand the difficulty in talking to doctors and teasing the right information out of them) Thanks again though, I think the time has definitely come to start putting pressure on them.

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