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This topic contains 29 replies, has 8 voices, and was last updated by  DrT 4 years, 1 month ago.

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  • #617

    DrT
    Moderator

    Ironllung,

    We’re here with you! You didn’t say how old your son is? But if his first seizure was in January and now his second is 2 months later then presumably he’s just hit the age where it can start, circa 18 months. Research says that they mostly grow out of it by 3 so thankfully it may only be 1.5 years now that you’ll need to monitor him.

    But at least each seizure has been with a fever (and a high one at that!) so FS is the likely diagnosis, which ahs an excellent prognosis as the site explains.

    Personally, we hold our son back from nursery if he has a cold and we camp out overnight with our son whenever he has a temperature. And we’ve found the cold defense nasal spray really has worked this winter …

    Tim

    #618

    kadiee22
    Participant

    Hello Everyone,

    We experienced our first febrile seizure last Thursday night at about 11:30 p.m. It scared my husband and I so much. We feel like we can never be the same after this experience. My daughter, who is a twin, is 16 months old, she had a fever of 102.3 I think it was that or close to it. Also, her seizure lasted about 8 or 9 minutes. She had been sick the whole day before like a cold and then very fussy the day of. I never checked her temperature until about 3 minutes before it happened. But I am almost certain she had a low fever the whole day because she did feel a little warm. Afterward they did diagnosis her with strep throat. We are so paranoid now that she will get sick again and have another one. We are constantly on edge. I do not know how some of you deal with your children having multiple seizures??? I feel sick to stomach and like I am going crazy with worry! Please help! Some advice or anything would be helpful! thank you!

    #619

    zoethomas
    Participant

    Hi
    The first few times your child has a seizure is extremely scarey. However, I have found I am now more calm with them as I tell myself she will be ok very soon. She has had 3 out of 8 in daycare and I think the guilt of having sent her to care is worse! (see sixth sense below!).
    We do get very concerned too each time our daughter shows signs of coming down with something – the last couple of nights she has had very mild croup in the early part if the night and I slept in her room (although I believe this is connected to the FC she had 10 days ago).
    Our daughter has had most of her seizure at the very start of an infection and often only gets a raised temperature after the seizure has stopped, so is very unpredictable.
    What gets us through?
    We’ve been reassured that the FCs are harmless.
    I had 2 myself as a baby/toddler.
    Our almost 4 year old had one at 21 months (high fever) but is now fine
    After a few FCs (8) a pattern seems to form based on her behaviour prior to – We’ve developed a sixth sense about when they may occur, now we just need to trust our instincts more!
    I’m confident that should she have one at night, she will most likely wake up grumpy as she has done in the daytime
    We have just had an EEG which, based on initial results, is clear – 10 days time we get the full results.
    She will grow out of them at anytime in the next 3 years – in the meantime we are trying to boost immunity with iron, super foods and juices.

    #620

    ItsEssexRob
    Participant

    Ironlung, it is terrifying. Reading the reports that no babies have ever come to harm from Febrile Seizures is reassuring though.

    I understand from this site and others that my sons age of having his first one was quite old (30 months). Does this mean he is less likely to get another as he is nearing the 3 year point?

    Also still the issue that concerns me is regarding having them whilst toddler is asleep, although I am in the process of finding a good monitor since I disbanded the baby ones thinking I wouldn’t need them when he turned 2.

    I’m sure plenty of babies and toddlers must have had FS’s whilst they and their parents are in bed, so the body must have a mechanism for ensuring they dont choke on sick whilst unconscious.

    #621

    DrT
    Moderator

    It IS terrifying. When the first seizure occurs most parents think their child is dying, which as Rob points out above is definitely NOT the case.

    The best thing we can do as parents to prevent future seizures is to prevent fevers. So have a look at this page – Fever Prevention.

    And in particular try and get some of the cold defense nasal spray (with carrageenan). We have been using it for 4 months now and not one fever due to a cold! The more I read about it the more amazing it seems …

    Tim

    #623

    zoethomas
    Participant

    Hi Tim
    Do you use the spray every day? Any side effects?
    I’ve been googling and can’t find a product in Australia like it (will have to get my parents to do a care package!).

    Zoë

    #624

    DrT
    Moderator

    Hi Zoe,

    Yes, once every morning. And during the day if he’s about to have a play date. No side effects at all … it’s just part of the routine now.

    Tim

    #626

    ItsEssexRob
    Participant

    I am struggling to cope a bit at the moment so I wondered if someone could help me here.

    I posted a couple of weeks ago that my son Reagan who is 30 months old had his first Febrile seizure at 6am, when he woke up after getting in our bed with tonsillitis.

    The following night we took in turns to stay up with him throughout the night whilst he slept, and things were fine.

    Tonight he appears to have a mild fever starting (current temperate is 37.6) and is coughing a lot, and I am wondering what to do.

    I have given him Calpol(paracetamol), kept him topless, and only put a light cover on him. and have been checking on him every 45 minutes or so and taking his temperature.

    However there was a bit of ambiguity about the digital ear thermometer readings. The first one read 37.4, then he turned over from the side where he had been laying and the other ear read 38.2, then a minute later it read 37.2 and thats the last reading I’ve taken.

    Is it normal for the thermometer to read higher when a child has just turned over thus exposing the ear that has been on the pillow?

    I already suffer from OCD and anxiety disorder and am finding this very distressing as I feel I want to stay up with him all night, but know its not practical.

    From what I have read its quite unusual for 30 month olds to get FS’s and also for them to occur at night, could this be due to the one off circumstances I explained in my original posts, or is he still likely to get them again?

    Thanks

    Rob

    #627

    DrT
    Moderator

    Oh Rob … I’m so sorry I missed this till now. What a horrible night you must have had. I know those all-nighters well :(

    100% yes the digital ear thermometers will read higher for the ‘down’ ear just after they turn over. Have a look at this page – here.

    We usually take a few readings and average them.

    You should look at CBT as well, the community has given good feedback on it for treating the anxiety we feel …

    Tim

    #628

    ItsEssexRob
    Participant

    Thanks for the reply :-) . His temp has gone down a bit today but was 38.5 earlier. Seems to be another viral infection.

    Is it true that if as FS has not occured within the first day of the fever it is unlikely to occur at all in this illness?

    Also if anyone out there is reasonably qualified or in the know the hardest thing I am finding to cope with is the fear at nights.

    If a toddler/baby were to have a FS whilst parents were asleep, and it wasn;t particuarly noisy, would natural body mechanisms prevent the child from choking on vomit or saliva?

    Every peice of advice centers around ‘ making sure your child isnt in danger and move him to his side, but I cannot find any help anywhere for the situation where the parents are asleep or arent there when the FS occurs.

    Since FS seem to occur sometimes before fevers or illnesses are noticed by the parents it would seem this is not an unlikely scenario, yet I can find no help for it. Need to know to help me cope at nights without spending all night up.

    Thanks

    Rob

    #629

    DrT
    Moderator

    Hi Rob,

    I hope you got through another day ok and he’s asleep now … though that probably means you’re camping out. I feel for you man.

    For nightime seizures, I would think there is a lot of advice about coping with epileptic seizures that happen at night … so I’d start searching there???

    As far as getting through the first day of a fever etc, seizures do generally happen within the first 24 hours but fevers can ebb and flow so seizures can occur several days into a fever. Our son’s 2nd seizure was probably 4-5 days into a seriously bad gastro virus …

    Tim

    #637

    DrT
    Moderator

    Hi Rob,

    Just a follow up, for chronic epilepsy sufferers there are alarm systems that will purportedly detect when they are having a tonic-clonic seizure in bed and alert either locally or remotely. The term to search for is “bed seizure alarm”. One example is here.

    Tim

    #638

    DrT
    Moderator

    It looks like the Emfit system is pretty good, but expensive … a recent study out of the US said that it had an 85% success at detecting tonic-clonic seizures in sleeping children.

    http://www.ncbi.nlm.nih.gov/pubmed/23364654

    You can get a remote monitoring system (and turn the base system volume down) so that it alerts the child’s parents rather than waking the child for any false alarms. It looks like around £500 all in so we’ll probably invest in one and see how it goes …

    #658

    ItsEssexRob
    Participant

    I am far too poor for these kind of alarms though even though I would like one. Any idea where I can get similar things for under £50? What does everyone reccommend for a monitor for a toddler for this? Movement ones arent suitable for toddlers and would the seizure make enough noise to be detected by a normal monitor?

    Thanks

    #662

    DrT
    Moderator

    Hi Rob,

    The UK supplier is trying really hard to keep the costs down and it’s probably closer to £300 than £500, sorry.

    Otherwise, we currently use a BT Monitor 150 (which has been discontinued but you can still get on eBay for £50) and that is certainly sensitive enough to pick up any noises … but it isn’t a motion sensor at all. A lot of parents report that their children do make noises when they seize so it may be enough …

    Tim

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