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Thread: Dad Needs Some Comforting --Febrile Seizure

  1. #1

    Default Dad Needs Some Comforting --Febrile Seizure

    This past Wednesday my 3 year old daughter was napping at daycare when the provider noticed that she was seizing. She was sent to the ER and had an additional 4 general tonic clonic episodes en route--arriving with a temperature of 104. All in all it is believed that she was at least 45 minutes of repeated events without return to baseline activity. They provided heavy doses of Ativan and Fosphenyton to get the seizures down---she was then transported to childrens hospital here in boston. She was intubated, given EEg leads, had a lumbar spinal tap and was ultimately switched over to Keppra. To say i am emotionally drained at what has happened to my poor little girl would be an understatement. Since my wife has a past history of seizures as a child, i think they were likely more concerned than normal and decided that they would give us the option to keep her on the keppra for a year or go with no meds (and only the safety diazopam). We decided against the keppra as we were pretty sure it was creating a devil inside of our child. As i am winding down from the whole experience (we were just released tonight)--i'm having two nagging concerns---just so worried about what this could have potentially done to her brain--the interwebs is really tangling MY brain with a lot of studies showing that febrile status epileptic seizures can often lead to significant neurological damage. What do you guys think? I know that my little girl was still really out of it when she left--she was playing but couldn't stand up and was getting very emotional and violent (keppra maybe) but now some things i've read has me all freaked out that it could have really done some damage--given the time she was out. next--are my wife and i smart to not want her on a daily med like keppra---one of my cousins had experience and said it was like her daughter was 'crawling out of her skin' -- i felt the same way. Anyways a big thanks to any help out there. I need

  2. #2

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    this one in particular: http://www.hindawi.com/journals/ert/2012/984124/

    i should also note --her spinal tap came back negative and eeg looked ok (according to docs)--no mri was done (as of

  3. #3
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    Hi cdogstu99,

    I am so sorry to hear that your child had so many seizures. I've had epilepsy for 43 yrs. along with 2 brain surgeries to help reduce my seizures. Epilepsy runs in my family also but I found out that I didn't inherit the gene that caused epilepsy because I have a different type of seizures compared to other family members. I was taking keppra for my absence and complex partial seizures and my temper got really bad and the keppra increased my seizures like crazy, also when I was put on the drug Neurontin it caused my to have absence status seizures which never happened in my life. To find the correct meds for your child ask the Dr. to do a DNA test on her they only take a few tubes of blood and wipe the inside of her mouth with a q-tip. All of this is sent to the lab and they can see how many enzymes are in your childs liver and they can see your childs body chemistry and then match all of that up to the best seizure med with the least side effect. I had this done a few yrs. ago after trying over 10 different seizure meds and not a single one stopped my seizure my Dr. found out I am drug resistant to all seizure meds that are out on the market. Be sure and keep track of your childs seizures get a calendar and write down what time they happen and the type of seizure your child had by doing this the Dr. may see a pattern in your childs seizures. To find out if more damage has been done request a PET or SPECT scan to be done on your child these tests show much more detail of the brain along with a fmir (functional MRI). I had all of these tests done and my Dr. thought I only had scar tissue on the right temporal lobe but when they did surgery on me they found damage on the left temporal lobe and the frontal lobe that not a single test showed because the damage was to deep in the brain. Try putting your child on vitamin B12 also it helps calm the nerves down and it has done wonders reducing my seizures. Be sure to take your child to an Epileptologist (Dr. specializing in Epilepsy) you can find these Drs. at big hospitals or university hospitals but her GP with have to refer her to see one. I wish you and your family the best of luck and May God Bless All of You!

    Sue
    Last edited by Porkette; 08-29-2015 at 03:20 AM.

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((cdogstu99)))))) ~

    To BrainTalk!

    I'm glad that you found us, but I'm so sorry for the reason you needed to find us.

    Seizures are frightening, and I certainly understand everything that you and your wife are going through right now. My heart and prayers go out to you. You feel so helpless as a parent, desperately wanting to do something, anything, to make the seizure stop.

    Was the underlying cause of her fever determined? Does your daughter have an infection?

    Seizures can often be sleep related ~ occur prior to falling asleep, while asleep, or upon awakening suddenly from sleep. Since your daughter was napping at the time her seizures began, that is worth investigating. Perhaps you could discuss a sleep study for your daughter with her neurologist.

    While I have no personal experience with Keppra, I have read the accounts of many parents of children with epilepsy, as well as adults, who have had "Keppra Rage." So, it is a common side effect.

    Keppra also seems to be a popular "go to" anti-epilepsy drug (AED) these days. It's been offered to my son by a few neuros over the past 7 or so years. I know other parents, who did try Keppra, at the neuro's suggestion, without success, because Keppra isn't necessarily the right drug to treat all seizure types.

    As Sue said, the best way to determine the best drug is to have the DNA testing.

    It might also be worth asking your daughter's neuro about the possibility that your daughter has Vitamin B6 deficiency:

    http://ghr.nlm.nih.gov/condition/pyr...ndent-epilepsy

    It's rare, but I know of at least two BrainTalk members, whose daughters had pyridoxine-dependent epilepsy. I say, leave no stone unturned.

    Please join us on Child Neurology, where you will meet parents of children with neuro issues, many of whom have seizure disorders. Lots of insight, expert advice, and loving support. Just copy/paste your post from here to start a new thread on Child Neurology:

    http://www.braintalkcommunities.org/...hild-Neurology

    My son, Jon, has been battling the seizure beast for a week now, so please know that I truly do understand what you're going through. Prayers for answers for your precious daughter and strength for you and your wife.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    I am so sorry you and your little girl have endured this nightmare. You all must be exhausted. I hope you both are able to get some really deep rest at home now. Our son Nicholas has severe CP and at two years of age, his epilepsy was diagnosed. I remember that first call from the day care saying he'd had a seizure like it was yesterday. I am not a neuro, but my experience tells me that it is most likely that she did not suffer brain damage. If the EEG was OK and the lumbar puncture was good showing no meningitis, I think these are very good signs. But if your girl isn't back to normal in 5-7 days, I would definitely take her back to the ER and insist on a MRI. Our Nick is on Keppra (with no ill effects) as well as Tegretol and Lyrica. Certainly your girl has suffered an assault on her brain with the status seizure, but she's very young which means more neuro plasticity to heal. This is a real reason to hope for the best outcome. Very unfortunately, in the case of neurology and especially seizures, often a 'wait and see' approach is needed (which gives us no predictability and of course feels unbearable to parents). How is she doing these couple of days later? With warm wishes for restful, healing home time and back to normal status soon.
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  6. #6

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    So the underlying cause was never really figured out--i think they just suspected it was a viral infection since the bacterial tests turned up negative. My wife also as a child had similar experiences (albeit not as extreme) brought on by high fevers. All that i can say is that here we are three days later--and WHAT a difference. Although the last two days she complained that her head hurt (doc said likely headaches from all the meds), today she was practically her normal self. Playing, running, jumping, singing, eating, all of it. A few times she was starting to annoy me, which inside made me actually so very happy! Pretty crazy to think just three days ago she couldn't even walk and her eyes were completely drugged out and she was acting completely not herself. We do have a follow up visit with the neurologist on Wednesday..so i guess we really don't know how severe the impact might have been. Now i am completely terrified of sending her back into daycare. Even though they are ok with administering the Diastat--i just know that the daycare provides a higher probability of recurrence---and to boot my 9 month old daughter will start at the same daycare next week, and I'm assuming she also is carrying the same gene. Life as a parent I guess. Thank you all for sharing your stories. I do appreciate the insight. I will keep you

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    ((((((cdogstu99)))))) ~

    Wonderful news that your daughter is behaving typically and is demonstrating cognitive awareness!

    When you visit your daughter's neuro, perhaps you should mention your concern about your 9 month old daughter carrying the gene (if there is a genetic connection to your daughter's seizures), and ask about genetic testing. This might be an opportunity for you to be proactive.

    Why do you feel that day care provides a higher probability of recurrence? Is it the presence of germs at day care, which might lead to a viral infection and a fever? If so, are there other options? Perhaps a day care provider, who comes to your home and only cares for your children?

    Please do keep us updated. And remember, you're invited to join us on Child Neurology any time.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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