It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Epilepsy Message Board

  • coping with your infant having seizures

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 10-03-2006, 10:20 PM   #1
    Momma05
    Newbie
    (female)
     
    Momma05's Avatar
     
    Join Date: Oct 2006
    Location: Gilbert, SC, USA
    Posts: 1
    Momma05 HB User
    coping with your infant having seizures

    I sit here, searching all over the net, trying to find some support right now.

    My daughter started having petit mal seizures at 2 months old, we recognized them at 5 months, and she was diagnosed/started on Phenobarbital at 7 months.

    Her seizures have since progressed. Around 14 months, she started having grand mals in her sleep, so we switched her medicine to Keppra, hoping to find new results. She stopped having her daily petit mals, and the grand mals have completely stopped.

    We were delighted at the results. Now, in the past few weeks (she's 18 months old now), she's started having a different type of seizure. Her hands ball up in fists, and her face distorts. It reminds me of a mini-stroke, and it lasts at the most 30 seconds.

    I think she has had about 20 in the past 2 days. It kills me, just kills me, to see my daughter in such pain. It's obvious it hurts her, afterwards she cries in pain and pulls her hair.

    I'm an emotional basketcase right now. She sees the neurologist tomorrow for further tests.

    I just need support. I'd like to find other moms who are coping with having a young child with epilepsy.

    I've also been looking for information on the effects of vaccinations on epilepsy. I've heard from friends that some of the vax's can cause seizures to progress. Does anyone have any info on this?

     
    Sponsors Lightbulb
       
    Old 10-04-2006, 06:02 AM   #2
    mmmscheid
    Newbie
    (female)
     
    mmmscheid's Avatar
     
    Join Date: Oct 2006
    Location: Ottawa, Ontario- Canada
    Posts: 1
    mmmscheid HB User
    Re: coping with your infant having seizures

    I'm so sorry to hear about your baby girl. Reading your message brought tears to my eyes because my daughter is experiencing the same thing and is the same age. She started at 4 months and has been on Phenobarb since then, she is now also taking clobazan at night. She was on Topomax but it was not working for her. She was sleepy and would have these 'blank stares' alll the time. We took her off of the Topomax, the doctors wanted her to take Keppra but we decided to continue giving her the phenobarb and clobozan and see how she would do. Knock on wood, she hasn't had any seizures since August 18th. The seizures were always about 30-40 seconds long, she would have several a day. Her eyes would roll towards the left and her hands and arms became stiff. It's so hard to watch... Has your daughter gone through any EEG's and MRI's? I'm always have a feeling/hope that it's some kind of allergy but the Dr's tell me it's not the case. Let me know if you hear any more information regarding vacinations.

    Hang in there,
    Michelle

     
    Old 10-04-2006, 09:48 AM   #3
    Travis from MN
    Senior Veteran
    (male)
     
    Join Date: Jan 2005
    Location: St Cloud, MN
    Posts: 1,242
    Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
    Re: coping with your infant having seizures

    Check the neuro clinc for any possible listings for ones in your area; also places of worship often provide support groups for parents. Best of luck.

    --Travis

     
    Old 10-06-2006, 10:27 PM   #4
    jeramiahsmom
    Newbie
    (female)
     
    jeramiahsmom's Avatar
     
    Join Date: Oct 2006
    Location: florida
    Posts: 3
    jeramiahsmom HB User
    Re: coping with your infant having seizures

    Hi my name is Josie I'm 25yr. old and i have a 9 month old who has been having seziures. i'm very sorry to hear what you have been going through and i know how you feel. my son started having them back in june. and has had about 3 a month. and they are grandma ones. The have put him on topamax and tegratol. If their is anyway anyone can help me with this. I just dont understand how the DRs. can say they dont know what is making him have them. they just up his dose of meds eveytime he has one. they tell me that it does not do brain damage, I dont see how it doesnt. I do to think that it could be alergies, i wont give my son apple juice he seems to have one everytime i give it to him and they tell me no that has nothing to do with it. this all started when he got his 4 month shots and they tell me that had nothing to do with it. i think it does. he has just gotin worse since it all started and they just keep uping his meds now he use to be this happy baby and now all he does is sleep and is grouchy. after a seziure he sleeps alot and does not have his motor skills the same. it takes atleast 2 days to get him back to normal. is this what happens to your baby? please get back to me.


    thanks
    josie, jeramiahsmom

     
    Old 10-18-2006, 11:03 PM   #5
    kate_wa
    Newbie
    (female)
     
    kate_wa's Avatar
     
    Join Date: Sep 2006
    Location: Australia
    Posts: 3
    kate_wa HB User
    Re: coping with your infant having seizures

    Hi there
    I'm so sorry to hear about your babies you must be so worried.
    My son was diagnosed with epilepsy 2 months ago (after his 12 month injections, which i think had something to do with it but of course the doc said no !!)
    Know how you feel about the doctors. My son has gone from being a good natured kid to be being angry and hyperactive all the time. Yet they keep telling me that the meds (epilim) haven't made him like that. Every time he has a seizure (they can't even tell me what kind he has) they just up his meds more and it breaks my heart to see him go through this. Would be interested if anyone knew anything about vaccinations and epilepsy...

    Try and keep your chin up, things will get better eventually !!

     
    Old 10-19-2006, 07:28 AM   #6
    Rebecca's Mom
    Senior Member
    (female)
     
    Rebecca's Mom's Avatar
     
    Join Date: Oct 2002
    Location: Canada
    Posts: 154
    Rebecca's Mom HB User
    Re: coping with your infant having seizures

    You parents with young children take me back. It takes my breath away actually. My Rebecca is now 21. When we first started noticiing her seizures, it was after her first needle - but we can't be absolutely positive of the timing. If we ever mentioned it to any of her many doctors, they ignored it. 21 years later some of her doctors continue to want to increase meds. Nothing works and then it becomes more complicated from side effects ie. is it her, is it the meds - what is it? Makes me crazy. The longest time she ever went without a tonic clonic seizure - she was on no meds. Well, we keep trying but when I look back and the fact that she is mentally challenged (functions at @age 4) I feel that some of her difficult behaviours became part of her because of the meds. That part I do regret. It is very complicated, because you want to give them a chance with the meds, but you also don't want them still seizing and side effects on top it it.................every case is different....the love for your child will help you through the pain.....it is what got me through those years........Paula
    __________________
    Paula

     
    Old 10-19-2006, 08:34 AM   #7
    jeri L.
    Junior Member
    (female)
     
    jeri L.'s Avatar
     
    Join Date: Sep 2006
    Location: northern california
    Posts: 33
    jeri L. HB User
    Re: coping with your infant having seizures

    Hello. My daughter has a seizure disorder also. Altough she is now 16 years old, reading your post brought back memories of how frantic I was as a mother when she was an infant. I spend many, many hours in emergency rooms because she would have long-lasting seizures (status seizures) that wouldn't quit without intervention. She was constantly "breaking through" her medication thresholds and would always have seizures with fever. She has grand mal and myoclonic seizures, and is now currently suspected of having temporal lobe epilepsy also. Speaking from experience, I can definitely relate when you use the expression "basket case" but honestly, try not to get totally discouraged... my child's neurologist once told me that lots of kids eventually develope patterns with their seizure disorder. Mine now only has very infrequent grand mals while sleeping and usually only when she's sick. I've learned to accept this although she must remain on meds to control them to this point. She is on lamictal. At least being in bed is a safe place to be if she's going to have a seizure, and she doesn't have to wear protective gear anymore. There are new meds out these days too. You are going through challenging times for sure and I empathize. Hang in there. You're not alone. Sounds like you're doing everything you can as a mom. Best wishes.

     
    Old 10-19-2006, 08:38 AM   #8
    jeri L.
    Junior Member
    (female)
     
    jeri L.'s Avatar
     
    Join Date: Sep 2006
    Location: northern california
    Posts: 33
    jeri L. HB User
    Re: coping with your infant having seizures

    Quote:
    Originally Posted by Rebecca's Mom
    You parents with young children take me back. It takes my breath away actually. My Rebecca is now 21. When we first started noticiing her seizures, it was after her first needle - but we can't be absolutely positive of the timing. If we ever mentioned it to any of her many doctors, they ignored it. 21 years later some of her doctors continue to want to increase meds. Nothing works and then it becomes more complicated from side effects ie. is it her, is it the meds - what is it? Makes me crazy. The longest time she ever went without a tonic clonic seizure - she was on no meds. Well, we keep trying but when I look back and the fact that she is mentally challenged (functions at @age 4) I feel that some of her difficult behaviours became part of her because of the meds. That part I do regret. It is very complicated, because you want to give them a chance with the meds, but you also don't want them still seizing and side effects on top it it.................every case is different....the love for your child will help you through the pain.....it is what got me through those years........Paula
    Rebecca's mom, I can relate to your situation. My daughter is 16, mentally challenged and functions at age 2 to 4. It's been a long road, but I love her so much. She exhibits difficult behaviors these days I think the behaviors are more challenging than anything these days. But she's a sweetheart.

    Last edited by jeri L.; 10-19-2006 at 08:42 AM. Reason: forgot to add reply

     
    Old 10-19-2006, 01:24 PM   #9
    Rebecca's Mom
    Senior Member
    (female)
     
    Rebecca's Mom's Avatar
     
    Join Date: Oct 2002
    Location: Canada
    Posts: 154
    Rebecca's Mom HB User
    Re: coping with your infant having seizures

    Jeri - isn't it interesting how sometimes the behaviour is more difficult than the seizures? Seizures are horrible but somehow as a Mom, I felt like I could change or help with the behaviour. Rebecca's behaviour is more of irritability now but very manageable. There was more aggression in earlier years. The less meds she is on (they do nothing anyway) the better her moods are. She has had a VNS, Corpus Callosotomy and keto diet - no change. Been there, done that. I'm glad you enjoy your daughter. I love Rebecca to pieces. She is so very easy to love and we are very proud of her...........cheers to all the Moms......Paula
    __________________
    Paula

     
    Old 10-20-2006, 10:15 AM   #10
    Travis from MN
    Senior Veteran
    (male)
     
    Join Date: Jan 2005
    Location: St Cloud, MN
    Posts: 1,242
    Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
    Re: coping with your infant having seizures

    Don't know if this will help... Comming from one who had their seizures start at age 5 it was "normal" to me being they started at such an early stage in my life. Had they started later I'm sure it would have made things more of a struggle in life.

    I was lucky in my case the brain was not fully developed so the functions in the region effected could, as the surgon stated, "transfer over" to the other hemisphear (side) of the brain. Those would have been speech and fine motor. I needed a little help in speech, but not nearly the amount had that happened a year later.

    Kids bounce back a lot more then we see them as. They are not quite as fragile as we think them to be! Recovery time tends to be shorter than in adults.

    --Travis

     
    Old 10-24-2006, 01:19 PM   #11
    cher1052
    Veteran
    (female)
     
    cher1052's Avatar
     
    Join Date: Oct 2006
    Location: USA
    Posts: 341
    cher1052 HB User
    Re: coping with your infant having seizures

    Travis-What you just posted is so true-was like that for me- the side of the brain in my case that were damaged were taken over by the other side. Amazing how the body does what it can to help. I'm sure my parents went through all the same that these parents have.
    and just like all your stories mine began at that young of age,I'm now 49-doing great-was able to a surgery that helped me even more-am still on 2 meds-have been seizure free for 3 years. Cherie

     
    Old 12-03-2006, 07:17 PM   #12
    laurynsmom
    Newbie
    (female)
     
    laurynsmom's Avatar
     
    Join Date: Dec 2006
    Posts: 1
    laurynsmom HB User
    Re: coping with your infant having seizures

    Hi,

    Finally...I have have heard of someone else going through the same thing I am with my child. My daughter had her first seizure at 5 months and has since had 4 abnormal EEG's, 2 normal MRI's, been on as much as 150mg/day of Topamax with minimal results, and is now 13 months old and we are still as frustrated today as we were 8 months ago. When she has her seizure, her eyes go up and over to the right and her head tilts to the right also. She also usually puts her right hand over her right eye and sucks her left thumb. This usually lasts for a couple of minutes and then she is back to normal. She was off her meds for about a month, because we didn't think they were doing anything. Well, we had to put her back on 25mg/day of Topamax because her seizures were becoming more frequent (4 or 5 a day!), she was waking up at least 2 or 3 times at night with a seizure, and she was very irritable. It's so hard to know how she is feeling because she is too young to tell us. Her seizure also happened about a week after her 4 mo. vaccination. We have seen 2 different neurologists, neither of which know what's going on. My daughter is scheduled for yet another EEG in a week to see if there are any changes. We're probably going to try a different med to see if it helps.

    Sorry for the super long entry, but I would definitely appreciate any comments or advise.

    laurynsmom

     
    Old 12-04-2006, 07:20 AM   #13
    Rebecca's Mom
    Senior Member
    (female)
     
    Rebecca's Mom's Avatar
     
    Join Date: Oct 2002
    Location: Canada
    Posts: 154
    Rebecca's Mom HB User
    Re: coping with your infant having seizures

    My Rebecca is now age 21 - seizures daily and developmentally is age 4. Noticed her seizures around 3 months - confirmed at 5 months. We have never to this day found a reason for them. In the back of our minds, we are thinking her 3 month shot (since then she never gets pertussis) but doctors will never admit to it being that. In fact, there was a Mom at the hospital suggesting so for her son and there was alot of hush hush. That was a long time ago and it is interesting that it is still being ignored.

    In our long journey, we have had to put the WHY behind us in order to cope. It is important you place no blame on yourselves (all you Mom's). Keep loving your baby and that love will see you through.

    Loving mother to Rebecca...Paula
    __________________
    Paula

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    petit mal seizures in infant momtoscotty6 Epilepsy 0 02-16-2009 03:56 PM
    SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you! HelloKathy Epilepsy 206 06-05-2008 11:55 AM
    Can any 1 Help? I started Having Seizures at 24 StressInNewYork Brain & Nervous System Disorders 1 04-26-2007 08:47 AM
    Infant spasm or seizure? roxyfoxy Infant Care (up to 18 months old) 12 03-16-2007 10:49 PM
    Coping With Anxiety Treetop Anxiety 164 11-19-2005 01:41 PM
    Helping an infant with possible CP sleep? waffle13 Cerebral Palsy 3 03-14-2004 06:48 PM
    Infant with Autistic Tendencies SewMommy Autism Spectrum 7 01-02-2004 05:50 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 06:56 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!