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How to cope living with your child's febrile convulsions

(6 Posts)
egypt Thu 25-Jul-13 08:27:54

Hi. Would really appreciate any advice out there. My sisters 13 month old daughter sufferers 2 FCs last weekend within 24 hrs. She called 999 each time and her dd was admitted and home the following days. My sister, however is now a nervous wreck. She is beside herself with panic and worry and especially fearful of the future. She is likely to suffer more until age 5 and my sister says she cannot ever leave her. She has to go back to work in 3 wks and just can't. She's hysterical with worry and is thinking worst case scenario each time. I'm really worried about her. She's a very easily shaken person and panics to the nth degree. I can't console her or reason with her. She sleeps with the baby again (on floor of her room), takes her temp throughout night. How will she ever cope? Any advice please?!

monikar Thu 25-Jul-13 10:36:25

My heart goes out to our sister and to you, it is the most frightening thing ever. My DD had a febrile convulsion when she was 2, I thought she was dead, and it has never left me.

The important thing to tell your sister is that it is the speed of the temperature rise which causes the convulsion, rather than the height of the temperature itself. So, at the first sign of a fever, strip the baby down to her nappy, put her under a fan and give her the age-appropriate dose of calpol.

What I used to do was to alternate doses of calpol and nurofen so DD always had something in her system. Also, I would advise her to write down the time she gave each dose as when you have been awake for nights on end you can get very muddled.

It is true that your niece could continue to have febrile convulsions until she is 5, but it is also possible that she could never have another one again. As she is so vigilant with the temperature it is less likely. Once your niece is 5yo the risk of convulsions decreases dramatically.

Did the hospital identify what had caused the temperature in your niece?

Your sister is going to be very fragile for a long time, and really just needs understanding and support. I felt I was going mad with the worry. As far as going back to work is concerned, I would advise her to write down instructions as to what to do should DD get a temperature and give this to the person minding her.

I used to check my DD's temperature constantly but as she got bigger, the worry did subside a little. However, it never really goes - my DD is 17 now and if she is unwell now and gets a temperature my stomach gets in a knot and I get dreadfully worried, so I do understand.

I don't think other mums understood my anxiety over it at the time - unless you have seen your baby fitting it is hard to describe how terrified and helpless you feel. Feel free to pm me if you have any other questions or just want to talk about it - I know how difficult it is.

flowers

egypt Thu 25-Jul-13 13:40:56

Thanks so much for your help. She had had the mmr vaccine the week before and they (after considering lumbar puncture and doing many tests) they put it down to that when the measles rash started to show. I know my sister will be petrified of giving her any more vaccinations too now. Poor things.

I believe she understands that its the speed of the temperature which causes them. Which I think is worrying her more as it could come on so quickly she worries that she won't be there. I will see them next. She really is beside herself. Poor things. X

Jenny70 Thu 25-Jul-13 13:47:33

My nephew has bad convulsions too -he is 5 now, and we are hoping he's nearly grown out of them -less frequent and last one was 7 months ago.

You just have to continue with life. Make sure carers are aware, look for the pre-febrile behaviour - looking run down, tugging ear, signs of cold coming on etc.

His doctor said no calpol, didn't act fast enough and bad to give it "just in case".

It is worrying, but you learn to cope, even if you're a worrier!

Jenny70 Thu 25-Jul-13 13:50:18

My nephew has bad convulsions too -he is 5 now, and we are hoping he's nearly grown out of them -less frequent and last one was 7 months ago.

You just have to continue with life. Make sure carers are aware, look for the pre-febrile behaviour - looking run down, tugging ear, signs of cold coming on etc.

His doctor said no calpol, didn't act fast enough and bad to give it "just in case".

It is worrying, but you learn to cope, even if you're a worrier!

Liskey Thu 25-Jul-13 14:10:45

DD has had about 8 febrile convulsions since she was 18 months old, caused by UTI's, ear infections and colds. It is the speed the temperature rises at so it's not really possible to prevent them by dosing up with calpol/ibrufen as the temperature would rise anyway when the drug wears off.

Though they look scary they are mostly harmless really as children's bodies can't cope with the temperature rise.

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