Experience of febrile convulsions

[DancingInTheMoonlight]

Just wondered if anyone had any experience if their child having febrile convulsions?

My ds had his first fit aged 13 months and had 20+ fits within a 11 month period (with a 7 1/2 month break until the last fit last week.

He has complex seizures (more than one per episode if illness) and although they are generally less than 5 minutes, there have been 2 occasions where an ambulance has been needed and he had been hospitalised about 5 times.

How do people cope with this? We are managing on a practical level (after 20+ fits it no longer has the same shock factor). Forever the constant worry of another fit due to a viral illness and the sudden depletion of possible babysitters (who would be too worried to look after him in case he fitted, plus its not very fair to give someone that level of responsibility) had had an massive emotional impact. Luckily dh and i are quite a solid, pragmatic coupe and although it had been difficult we have pulled together so far.

Howe does everyone else manage emotionally? Have you any tips to ensure it doesn't begin to affect mine and dh's relationship. When did you start to breathe easy again?

Hi, I can't be of much help as my DS1 only had one febrile convulsion, but am posting to give moral support as it must be awful. DS1 has other special needs so it frightened the life out of me when he had his seizure. He has blood sugar problems and I didn't have a clue what it was - thought maybe he was going into a coma (although his low blood sugar doesn't usually present like that at all). We were also on a walk, miles from anywhere. Luckily I had a very level-headed friend with me who dealt with DS whilst I phoned the ambulance.

I feel for you re managing on a practical level. DS's general condition meant that for about 3 years, we couldn't have babysitters. It sounds so frivolous, but it's so important to be able to get out with your DH occasionally (or at least, not to feel that you can't IYSWIM).

The only advice I can suggest until someone more experienced comes along is can you train a trusted friend up to help, and start by going out somewhere very near?

I hope your DS grows out of it - am I right in thinking there is a chance he might, even though he has had so many?

We have no family nearby but when we visit mil she babysits for a few hours in the evening when he's asleep. However her physical health isn't great so I'm not keen on doing it when he's awake.

I think we are still feeling a little 'sore' inn terms of his latest fit as there had been nearly an 8 month gap so wee had relaxed a kettle and dared to think he may gabber grown out of them. Friends had been happier to baby sit. I don't blame them at all as its a massive responsibility and a scary prospect and I'm not sure i would feel happy putting that responsibility on then

I have a friend who lives some distance away who is in the medical profession and happy to babysit but she has recently become a single parent, has a, young dc herself and an unreliable and nasty ex so she needs her over night off to recharge.

I think the only person who could baby sit is ds' childminder. However we would have to pay so that won't be regular!

On the positive side i have lovely friends, supportive in laws and a supportive dh. When ds is healthy its great, but the fitting is so frustrating and i worry about the long term impact on ds of so many fits.

DS 17 had 20+ and my dd 15 had 4.

My side of the the family have a genetic syndrome called GEFS+ and my mum, sister and my grandmother all had fs upto the age of 10. I was bought up with my DSIS having them so I was used to them.
DS was 13.5 when he had the last one which was 4 years ago and I hope that he will not have another. He had a the first one at 15 months then most of the other up to his 6th birthday, then another at 8, next at 10 and finally the last one at 13. My DDs were at the age of 3 over about a year. They managed to have 4 between them in a two week period, that week my nerves were shot to pieces.

There is a brilliant quote from Toddler Taming by Christopher Green

"The short fever fit rarely harms the child, just its mothers nerves"

I think you also have to remember they very dont have any memory of what happens. DS is always slightly confused when he wakes up but never seem to be affected by them.

Thanks Bruffin, developmentally he is fine- in fact it seems like he has a developmental growth spurt after each set of fits. There is no family history of febrile conversions in either of our families but it will be a consideration if/when we think about ttc.

I think we are still a little shell shocked as all his fits had been in a short space of time and after a 8 months we had unpacked the hospital bag that we had had ready and, although we still carried medication i think we hadn't expected to use them...

I guess we just need to re adjust our thinking again...

I did see a but if research that said children that have fs have higher IQ . My Ds is dyslexic but he gets that from dh, but he is very bright and on g&t at school.
Genetically I had 2 sisters one had a couple of fs and the other had gefs+. I never had any but it was my Ds that got the gefs. My sister with the gefs never had any children.
As I sad Dd had 4 but that was a long time ago.

I did see a but if research that said children that have fs have higher IQ . My Ds is dyslexic but he gets that from dh, but he is very bright and on g&t at school.
Genetically I had 2 sisters one had a couple of fs and the other had gefs+. I never had any but it was my Ds that got the gefs. My sister with the gefs never had any children.
As I sad Dd had 4 but that was a long time ago.

Its nice to hear from someone who has come out the other side of it! At the moment i can't imagine that day yet but hopefully it won't be too long. He's thing tonight and is a little warm, and although teething doesn't cause fc it still makes me anxious and check more!