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  • #77

    febrileseizures
    Key Master

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    #517

    Christine Westbrook

    Hi
    Hopefully my children have grown out of febrile convulsions now as they are 15 and 17.

    My son has had over 20 and the last one was when he was 13.5 caused by pnuemonia. They diagnosed him with GEFS+ then which was a fairly recently discovered syndrome, but my family had a long family history of febrile convulsions up until puberty.
    My mum and my sister both had them until they were 10 and we think my grandmother had them as well. My daughter had 4 but that was when she was 3 to 4 years of age.

    #521

    Tim

    Wow Christine. We’re only 1 year into the journey and 3 seizures so far. First one was status epilepticus with chicken pox though …

    Any advice?

    #522

    febrileseizures
    Key Master

    Hi guys,

    Thanks for posting. Please take a look at the Prognosis section and let us know if we have got it right there.

    FS

    #543

    Christine Westbrook

    From what I can gather Febrile convulsions are incredibly rare after the age of 5, so much so that most gps and even paediatricians might not have come across them. When my son had his last one and was in hospital the doctor said he couldn’t possibly have had a FS. I did point out to him we had a long family history of FS upto the age of at least 10 and he still said that couldn’t be possible.
    Thankfully out GP referred him to neurologist where they gave him further ECGS which ruled out epilepsy and they diagnosed GEFS+ (Generalized Epilepsy with Febrile Seizures+) the + means after the age of 5. GEFS+ is often associated with Dravets syndrome but my son doesn’t have that.

    Thankfully most of the FS my children have had have been under 5 minutes although there have been times when he has had more than 1.

    Sorry Tim, i dont have much advice because in our case the FS is the first sign they are ill and there is not much we can do to prevent them.

    There is a brilliant quote from Dr Christopher Green in Toddler Taming

    ” The short fever fit does not damage the child only it’s mother’s nerves” which has kept me going over the years.

    Its 4 years since the last one and touch wood I do think we are over it, for this generation. When my son was younger there was nothing on the internet at all about febrile convulsions in older children.

    #555

    ItsEssexRob
    Participant

    Hi there, my Son Reagan had one a few days ago after having viral infection for a day, I think it was our fault for letting him sleep with us as he must have got him extra hot, he woke up asking for a drink and then rolled over and started fitting, and us having no idea what it was were terrified. He is nearly 30 months old, which I gather is quite old for the first seizure? Is that a good sign, a bad sign or neither here nor there?

    It lasted between 45 seconds and 1 minute, but its often hard to tell the passage of time when you’re panicking and phoning ambulances. The thing that worries me is if he has a 30% chance of having another, and it is sometimes the first sign of an illness, what happens if he gets it at night whilst asleep in his room, how would we know?

    #560

    faldean
    Participant

    Hey my child is 2yrs old she’s had 7 febrile seizures since July I’m 26 yrs its driving me crazy because this last one I don’t no if she had a temp she was w. Child care who said she was not febrile at all. And more so the last 4 although she was febrile it didn’t follow any illness. She had an eeg sleep/awake study normal. The Dr. Gave me a hard time for further blood testing ordering a lead test . I’ve gotten a referral to see a neurologist who’s not accepting appts until April!! Any advice anyone

    #561

    DrT
    Moderator

    Hi ItsEssexRob and Faldean,

    First, ItsEssexRob, our son has had several seizures and when he is running a temperature one of us ‘camps out’ in his room on the floor. But the circadian rythmn is lowest at night so a seizure at night is less common.

    And Faldean, if there was a temperature then it was a ‘febrile’ seizure so the last 4 certainly were. And often the seizure is the first sign of an oncoming fever so even if they aren’t at the time of the seizure they may very soon be. Our son had one seizure at nursery and they didn’t know he was running a fever until 5 minutes before it happened. They aren’t as diligent as we might be with thermometers.

    Cheers,
    Tim

    #565

    zoethomas
    Participant

    So glad to have found you!
    Our almost 18 month daughter had her 8th febrile convulsion today in 6 months. Her first happened at 11.5 months and she was ill with a cold and temp which then became an ear infection.
    All FCs have been a bit different – different times of day, some with temp prior, but most with temp rising only after the FC has finished.
    Getting used to them now, but it is still distressing with trips to hospital each time – there has always been some sort of respiratory bug diagnosed to differing degrees.
    She is scheduled for an EEG next week.
    One GP we have seen thought there may be a link between iron deficiency and FCs – she had blood tests and is deficient. So 10 days ago she started taking iron/vitamin supplement and we also took cows milk out of her diet and made some other changes. We’ll have follow up bloods in a couple of months to see if her iron levels have increased.
    It’s interesting to read the link between tiredness and FC – she has been very tired and grumpy prior to maybe half her FCs (3 occured after midday nap) but then that could just have been a sign of sickness.
    With summertime here the FCs have been less frequent (less viruses to pickup at daycare) but I am also hoping that her immunity is improving!
    Does immunity play a part?
    And there is also a family history (myself x 2 as a toddler, without warning).

    #572

    DrT
    Moderator

    Zoe,

    That is a lot to cope with. We’re here for you!

    I haven’t heard of the link with iron deficiency but will do some research. And as far as I know ‘tiredness’ isn’t a conclusive cause yet, hence the report a seizure page. Can I ask that you fill in a report for your daughter’s seizures???

    And 4pm is the most common time for a seizure which is typically following their lunchtime nap and according to their circadian rhythm.

    With regard to immunity, obviously any virus / bacteria can cause a fever and subsequent seizure so an improved immunity is always going to help. There is a page in the ‘useful stuff’ section on preventing fevers. But research suggests it is all hypothalamus linked which isn’t immunity per se.

    Regards,
    Tim

    #600

    ItsEssexRob
    Participant

    Regarding what has been posted since, is it likely that my sons FC which happened at 6am was exasperated by the fact he slept in his bed with a fleece cover and then in ours between me and my partner?

    My main concern ( the one which is currently keeping me up half the night) is of him having one in the night before he becomes noticeably ill, and us not waking up, as the first one he had was not particularly loud. I have read sporadically that seizure patients cant swallow their tongue or choke, but then other sources say ‘move your child on his side to avoid choking if he vomits’, which my DS did, but luckily he was in bed with us so we woke up.

    There seems to be a general consensus that FC are not dangerous to babies, so im under the impression he would automatically roll on his side when being sick, but being unconscious that seems odd, its really got me confused.

    When you say FC are not usually at night, how rare are we talking here?

    Thanks

    Rob

    #602

    DrT
    Moderator

    Hi Rob,

    This page gives a study that shows that 48 of 326 (or 15%) reported cases were between midnight and 7am.

    But that is still a high enough % for us so we ‘camp out’ in our sons room whenever he is running a fever (we have a futon there specifically for this purpose). We also have a BT baby monitor right under his bed that is very sensitive and have it on every night regardless. Also, our son sleeps on his front so that does allay our fears a little about him swallowing his tongue etc.

    What we can say though is that in all the studies we have read they have never listed a fatality due to febrile seizures.

    Tim

    #606

    ItsEssexRob
    Participant

    Thanks for the info. I am thinking of getting a monitor for peace of mind. Are the BT ones good? Any particular one?

    Thanks

    Rob

    #609

    DrT
    Moderator

    Hi Rob,

    We bought the BT 150 baby monitor about 3 years ago and it still works perfectly! Through 3 floors of thick terrace brick walls / floors. It has been replaced by the BT 250 monitor but review suggested the 250 was a step backwards so we bought another BT 150 for our second child a couple of months ago off eBay.

    Tim

    #615

    ironllung
    Participant

    Hello,

    My son just had his second Febriele seizure today at 10.25 a.m. This time he was at daycare and thank goodness he was in good hands. The first seizure was January 1, 2013 at 11:30 a.m and he was 20 months old (he is a fraternal twin). He went to bed New Year’s Eve with a slight fever and woke up the next morning feeling warm. He was playing well so we didn’t even take his temperature. He went down for an early nap and when he woke up he was really hot. Before we found a thermometer, he had one weird jerky movement while sitting on my lap. It freaked me out enough to get up and walk with him. Just moments later he had one more stiff jerk and his whole body went stiff as a board. My instinct was to hand him to my husband while we ran to the sink to cool him off, while screaming his name. When his skin turned blue, I took him back, screamed, “call 911″ and began CPR and begging him to stay with me. This lasted for about a minute or two (felt like hours) and when the paramedics showed up, he had a fever of 103.5. By the time we made it to the hospital, he was playing and flirting with the nurses.
    Today, he had had the FS, but he did not have a fever this morning when we dropped him off at 7:30. At 10:00 the teachers took his temperature and it was 101. By 10:20 it was 103 and he had a seizure at 10:25.
    I just don’t want the stress of this to give me a heart attack. Some of you posted that your child has had more than 5 seizures. How do carry on? How do you sleep? I don’t want to become paranoid or a hypochondriac every time one of my three children gets a cold.
    I’ll take any advice you can give.

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