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Kind of bummed about DD2....

nessamestreetnessamestreet
in Special Needs

So we were on Keppra but she had all the bad side effcts from it and started to have break threw seizures on it. So in Aug they started her on Topamax and weaned her off the Keppra. Well we went a little over a month without a single seizure that I know of and well the other night she had 1. Which I mean i know thats not bad but I am bummed that we went so long without one and now we had one ya know!

  I just feel like we get 3 steps ahead and fall back 2! Atlest this time she did not lose her speech. She didnt really say any words that night aftter she had it and all day the next day she was whiney and clingy all day and would not say any words, but then by thursday she was talking normal again! I just never thought I would have to go threw something like this and it kills me that there is nothing I can do to make this go away! She has saying all kinds of new words lately and when she had the seizure my heart sank because I thought for sure we were going to have to work on talking again! I am happy that we dont but man it hurts to know that she had another one after so long!

 

Sorry girls just have to vent. I dont really have anyone to talk to about this and so its just easier to come on here and say what I feel! Thanks for reading lol.

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Re: Kind of bummed about DD2....

  • AB&TBAB&TB
    I am sorry.  We are still trying to get seizure control after 2 years of muultiple daily seizures.  I can only imagine how heart breaking it would be to see another seizure after thinking that you finally had them under control.  It sucks so bad that we can't just somehow make it all better for our kids.  Hang in there.  Hugs!
    imageimageimageimageimage 9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks
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  • Glendi2.0Glendi2.0

    I know nothing about seizures, but I imagine it's beyond stressful... esp. after letting yourself think you may have beaten them. Vent away... something that's the very best thing you can do!

    In the meantime, that GREAT that she's still talking and back to good... sounds like you're def. on the right track!!

    A sister is a little bit of childhood that can never be lost. ~Marion C. Garrett
    image7_0002 A ~ 2.7.06 S ~ 9.2.07
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  • Mrs.RoseMrs.Rose member

    I hope that was just a one time thing and the new meds will keep her seizure free from now on. 

    Hang in there - and vent away!   

    a Image and video hosting by TinyPicImage and video hosting by TinyPic
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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

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  • lazysusanlazysusan member
    seizures are so hard.  It's great she is talking and seems to be back to herself.  My guy's seizures started around 16 months.  they were spaced apart and I would be feeling like maybe we were done and another would hit.  A positive I saw was that he always seemed to have a growth spurt in speech the few weeks following a seizure. 
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  • skittles_123skittles_123 member
    Awww, I am sorry. I don't have any experience in this area, but hopefully this was just a random thing. Glad she didn't loose her speech this time!
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