Febrile seizure medication

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This topic contains 11 replies, has 5 voices, and was last updated by  haejin0329 3 years, 9 months ago.

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  • #772

    vicky1986
    Participant

    Hey my 20 month old little girl had her 1st seizure last November she has now had 17 in total all lasting longer the 10 minutes, she’s had to have oxygen to bring her out of a few and some she’s also had 3 in row which has caused the doctors to sedate her :( we try our best to top her getting hot & ill as she does really suffer from them and its hard for me and her dad to o back to normal knowing she could have one at anytime!!! She is now under an epilepsy nurse and a Nuro consultant which she sees every 3-4 months and she has been given buccal midazolam 2.5mg for if her seizures last longer then 5 minutes!! But was wondering if there’s anything she can have everyday to prevent the seizures??
    Thanks
    Vicky

    #773

    DrT
    Moderator

    Hi Vicky,

    Firstly, 17 seizures in 9 months is an awful lot, I really feel for you. Have they all been when she has had a fever?

    As far as we know there is no chronic / preventative medication that is prescribed for FS. Though there are several studies that suggest grapefruit might help, and then there are some trials underway to test the efficacy of CO2 and also Calcium-channel blockers like Nimodipine. But these aren’t at all proven yet so please speak to your doctors.

    Cheers,
    Tim

    #774

    vicky1986
    Participant

    Hello

    No some she has had the seizure then got the temp & was ill!! She’s never ill before sometimes she has a temp but always ill after!

    Ok I will speak to my doctors, thank you

    #775

    vicky1986
    Participant

    Also they called hers ‘complex febrile seizures’ as she as all sorts of different types of seziures!

    #778

    lcorey22
    Participant

    My 21 month old takes a homeopathic remedy called cicuta virosa (http://abchomeopathy.com/r.php/Cic). She’s had 14 seizures since last September. Hers all look the same though (head arches back, body freezes, and the head shaking/ticking) and last 30 seconds- 2 minutes. We’ve also eliminated foods/supplements that show sensitivity through muscle response testing. Also, as soon as she comes down with an illness, we give her homeopathic notatum and quentans to stop the illness and hopefully avoid a seizure.

    She’s been under the care of several alternative doctors (I’ve found acupressure massage through a Chinese medicine practitioner really helps her kick an illness). Though our family doctor (an MD and homeopath) selected the cicuta virosa.

    I hope this helps! I’ve seen so many different people (allopathic, homeopathic, naturopathic, Chinese med, chiropractors, etc.) trying to figure her out. I’ve finally come to the realization that this is maybe just what happens when she gets sick. It doesn’t help to constantly be completely overwhelmed and stressed by it. I now work on keeping her healthy (through diet) as best as I can and try to keep her away from sick kids as much as possible.

    I’m interested in learning more about the grapefruit. But have also heard ketogenic or high fat (omega 3s) can help- but good luck doing that with a toddler!

    Best wishes!
    Lauren

    #779

    DrT
    Moderator

    Hi Lauren,

    Here is a link to the post on Nimodipine / grapefruit – http://febrileseizures.org.uk/forums/topic/calcium-channel-blockers-nimodipine-grapefruit-as-a-potential-treatment/.

    But please be aware that grapefruit has a lot of documented negative interactions with drugs so any positive benefits of grapefruit with respect to febrile seizures is very experimental at this stage.

    Cheers,
    Tim

    #780

    reenbait
    Participant

    Hi my daughter has had three complex febrile convulsions each one very serious as her airway was compromised and she has been intubated with two of them. No real underlying cause as to why she had them, yes she has a temp each time but doesn’t seem sick afterwards. After her last seizure in May the neurologist put her on Epilim, which is an epilepsy medication. This is supposed to increase her threshold for febrile seizures.

    #782

    DrT
    Moderator

    Hi reenbait,

    Thank you for sharing your story. We’ll look into Epilim.

    But, if you don’t mind me asking a few questions …

    – How does she take the Epilim? Capsules?
    – And how regularly does she take it?
    – And what dosage?
    – Also, how old is your daughter? And how old was she for each of the seizures?

    Regards,
    Tim

    #785

    reenbait
    Participant

    Hi Tim, she has Epilim (also known as Valproate) twice a day, 3ml in liquid form. I imagine that as she grows we will need to see our local paediatrician to adjust the dosage. My daughter is 2.5 and the first time she had a seizure was last year in July, she was 16 months. We rushed her to hospital where they incubated her and flew her to Melbourne. We live in rural Victoria, 4 hours from Melbourme. She was constantly seizing high temps, given midazolam and other drugs up the bottom (Valium maybe?). She was in Icu for a few nights and then admitted to the ward where they did Lumbar punctures and an EEG. Nothing really to determine what had caused the seizure, there was something in her spinal fluid but they couldn’t definitely say she had meningitis.

    The second time she had a seizure was in September last year, 18 months. We had traveled to Melbourne so that our daughter could have her follow up appointment. She had an EEG that morning and then later on saw a paediatrician as an outpatient. Given a clean bill of health, and so we were on our way home. Not even five minutes in the car, she starts having a seizure so we rushed her back into the hospital into emergency. They gave her midaz and anticonvulsants. She actually came out of this seizure as with her first one she was in status epileptiicus. A two night stay, no reason for the seizure but later on I wondered if it could have been brought on by her 18 month immunisations that she had had 4 days prior. I mentioned it to my Maternal Health nurse who agreed so she followed it up for me and got someone from a vaccination group (I can’t remember their name) to call me and they put it on record. After this seizure it was decided by our local paediatrician that we have midaz at home to administer intranasally, if she were to have another one.

    Her last seizure was in May, she was 2 years and 2 months old. I was on my own when I found her and wasn’t confident to administer the midaz on my own. I rang the ambulance straight away and even though it only took a few minutes to arrive, she was in a critical condition when they got to her. Her respiratory rate was only 8 breaths per minute and she had a GCS of 3. They put her on oxygen straight away and she was rushed up to our local hospital. Again she was intubated and flown to Melbourne. She would keep seizing every time the midaz wore off. I don’t know if she was given anticonvulsants there. She spent 5 nights in ICU and then a week on the Neuro ward at the Royal Children’s Hospital. She got a tummy bug while in there but I’m wondering if that is what caused the seizure in the first place and the runs didn’t come until a day or so later. She had CT scan, EEG, LP, and because she didn’t come out of extubation well, they rushed her through for an MRI as they were concerned about possible brain damage. All her tests came back clear. The only problem this time was she had a hard time coming off the multitude of antiseizure meds they put in her and it was almost like she was going through detox. She was shaking, she was repeating words constantly, she was then doing repetitive actions. It took about a week for these side effects to go away and we saw Physios, OTs dieticians and speech pathologists. It was very distressing. She had to relearn a few things. It was like she had forgotten. She is 100% now. But as a result of this last episode and the fact that we are a big distance from major hospitals, it was decided by the neurologist that looked after our daughter, to put her on epilepsy medication to help increase her threshold for febrile seizures. I was told by one of our local docs that I was lucky I found her when I did.

    Sorry for the essay, this has been so traumatic for us as parents and we are so hypervigilant now. We even have a mat on her cot that alerts us if she was to have a seizure or stop breathing. It is meant for people with epilepsy but my husband wanted some reassurance if she was to have a seizure at night and we were fast asleep. Not that we sleep well anymore.

    #786

    reenbait
    Participant

    Hi Tim, she has Epilim (also known as Valproate) twice a day, 3ml in liquid form. I imagine that as she grows we will need to see our local paediatrician to adjust the dosage. My daughter is 2.5 and the first time she had a seizure was last year in July, she was 16 months. We rushed her to hospital where they intubated her and flew her to Melbourne. We live in rural Victoria, 4 hours from Melbourme. She was constantly seizing high temps, given midazolam and other drugs up the bottom (Valium maybe?). She was in Icu for a few nights and then admitted to the ward where they did Lumbar punctures and an EEG. Nothing really to determine what had caused the seizure, there was something in her spinal fluid but they couldn’t definitely say she had meningitis.

    The second time she had a seizure was in September last year, 18 months. We had traveled to Melbourne so that our daughter could have her follow up appointment. She had an EEG that morning and then later on saw a paediatrician as an outpatient. Given a clean bill of health, and so we were on our way home. Not even five minutes in the car, she starts having a seizure so we rushed her back into the hospital into emergency. They gave her midaz and anticonvulsants. She actually came out of this seizure as with her first one she was in status epileptiicus. A two night stay, no reason for the seizure but later on I wondered if it could have been brought on by her 18 month immunisations that she had had 4 days prior. I mentioned it to my Maternal Health nurse who agreed so she followed it up for me and got someone from a vaccination group (I can’t remember their name) to call me and they put it on record. After this seizure it was decided by our local paediatrician that we have midaz at home to administer intranasally, if she were to have another one.

    Her last seizure was in May, she was 2 years and 2 months old. I was on my own when I found her and wasn’t confident to administer the midaz on my own. I rang the ambulance straight away and even though it only took a few minutes to arrive, she was in a critical condition when they got to her. Her respiratory rate was only 8 breaths per minute and she had a GCS of 3. They put her on oxygen straight away and she was rushed up to our local hospital. Again she was intubated and flown to Melbourne. She would keep seizing every time the midaz wore off. I don’t know if she was given anticonvulsants at our local hospital. She spent 5 nights in ICU and then a week on the Neuro ward at the Royal Children’s Hospital. She got a tummy bug while in there but I’m wondering if that is what caused the seizure in the first place and the runs didn’t come until a day or so later. She had CT scan, EEG, LP, and because she didn’t come out of extubation well, they rushed her through for an MRI as they were concerned about possible brain damage. All her tests came back clear. The only problem this time was she had a hard time coming off the multitude of antiseizure meds they put in her and it was almost like she was going through detox. She was shaking, she was repeating words constantly, she was then doing repetitive actions. It took about a week for these side effects to go away and we saw Physios, OTs dieticians and speech pathologists. It was very distressing. She had to relearn a few things. It was like she had forgotten. She is 100% now. But as a result of this last episode and the fact that we are a big distance from major hospitals, it was decided by the neurologist that looked after our daughter, to put her on epilepsy medication to help increase her threshold for febrile seizures. I was told by one of our local docs that I was lucky I found her when I did.

    Sorry for the essay, this has been so traumatic for us as parents and we are so hypervigilant now. We even have a mat on her cot that alerts us if she was to have a seizure or stop breathing. It is meant for people with epilepsy but my husband wanted some reassurance if she was to have a seizure at night and we were fast asleep. Not that we sleep well anymore.

    #787

    reenbait
    Participant

    Sorry for the duplicate post I was trying to correct incubate to intubate but somehow there are now two posts

    #788

    haejin0329
    Participant

    My daughter was first on trileptal and had an allergic reaction (broke out into a rash). Second medicine they gave her was keppra but it wasn’t helping. She had multiple seizures after 5 days into the medicine. Now she is on keppra (they will wean her off on this) and depokote. With depokote we also give her carnotior to protect her liver.. She takes the medicines twice a day, keppra orally, depokote sprinkles..
    We’ve been to the hospital three times, a week each.. just last month and it has been a traumatic experience for all of us. We are truly truly hoping that her third medicine works for her.. REENBAIT, I read your story and my heart truly goes out to your family.. because I know how it is like.. My daughter is 14 months old and it just pains us to see what she has to go through.. is there a hope….

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