Raising Special Needs Kids

Featured Posts
talisha32
Cerebral Palsy
October 14, 2013 at 9:44 PM

Hello!!!  My almost 4 year old was just diagnosed after a massive seizure this weekend.  I was just looking for Friends in the same situation.  She is very mild but now her quirks make more sense!  I have seen children with severe but never mild.  I am just wondering what to expect in the coming days, month, years!

Replies

  • BellaMama7
    October 14, 2013 at 10:00 PM

     Nuerology appointments 3-6 months apart with possible medications.. Best of luck for your family.

  • talisha32
    October 14, 2013 at 10:04 PM

    Thanks!  They put her on Keppra and we see the nuro on Nov 27th.  The meds make her so weak :( 


    Quoting BellaMama7:

     Nuerology appointments 3-6 months apart with possible medications.. Best of luck for your family.



  • BellaMama7
    October 14, 2013 at 10:10 PM

     I would tell her neurologist that you have noticed her medication making her weak, See if they will change it. You may or may not already do this, but if you write down a list of questions, concerns etc it'll help to keep track of the seizures so that tracking what her medication level may actually need to be at or changed in anyway it may help you to have some assurance. I hope I helped. =)

    Quoting talisha32:

    Thanks!  They put her on Keppra and we see the nuro on Nov 27th.  The meds make her so weak :( 

     

    Quoting BellaMama7:

     Nuerology appointments 3-6 months apart with possible medications.. Best of luck for your family.

     

     

     

  • N.Carter2001
    October 14, 2013 at 10:32 PM

    I  am a mom of 2 boys. I am 32 years old. And i have mild cp. Doctor said i would never do anything. Read write have a family.  I feel in love and we have a 5 and a 2 years old now. I take care of my family. I learn to cook. And right now im working on learning to drive.  Some stuff does take me longer to learn. But i do learn.People dont know i have cp when i 1st meet them. I did walk on my toes very bad growing up. I get soars on my feet and my running looks funny. I skip is what  people said it looks like. If you want to talk i will. im an open book. My oldest son has autism and he cant walk.

  • nicki.hemingway
    October 14, 2013 at 10:35 PM

    My son has mild-moderate cp. 

  • trio8707
    October 14, 2013 at 10:44 PM

    Hi, I have 6 year old triplets... 2 of them have CP.  Both of my kids are more on the severe side of the scale though.  My daughter was diagnosed with CP around 14 months old and diagnosed with epilepsy shortly after her 2nd birthday.  My son was diagnosed with CP about a month after my daughter.  He has not been diagnosed with epilepsy, however at 6 years old he had his first (and so far only, thank god) seizure.  He's not on medications yet, but they are keeping a close eye on him.  My daughter's medicine was just changed in August to Lamictol (sp?), we go back for a follow up EEG next month to see if its helping.  She was on Keppra for about a year, then they switched to Tegretol.  That had been working great up until about April when her seizures became out of control again.  The Lamictol has so far helped, but she also has a lot (sometimes hundreds a day) of little absent seizures so it's hard to tell if it's stopping those.

  • talisha32
    October 14, 2013 at 10:47 PM

    Thanks ladies!!!  I am just so scared right now!  She walks more pigeon toed. She does the clentched hand movements especially when she gets sleepy.  Will her ability to walk get worse?  Her hands?  I am just trying to stay away from google so I don't get over worried.  She is really clumsy.  Falls all the time.  Her little legs stays bruised.  But I just thought she got my clumsy genes :)  She plays soccer and pretty well I may add and takes hip hop and ballet and tap.  Is it ok to let her continue these things?

  • talisha32
    October 14, 2013 at 10:50 PM


    That's what her nuro is worried about.  Said she may be having tons in her sleep.  I had febrile ones when I was a kid, so we are hoping that she has febrile seizures and cerebral palsy and that they are not connected.  We had 1 eeg in the hospital and it was good.  They said they would do another and prob a sleep study.

    Quoting trio8707:

    Hi, I have 6 year old triplets... 2 of them have CP.  Both of my kids are more on the severe side of the scale though.  My daughter was diagnosed with CP around 14 months old and diagnosed with epilepsy shortly after her 2nd birthday.  My son was diagnosed with CP about a month after my daughter.  He has not been diagnosed with epilepsy, however at 6 years old he had his first (and so far only, thank god) seizure.  He's not on medications yet, but they are keeping a close eye on him.  My daughter's medicine was just changed in August to Lamictol (sp?), we go back for a follow up EEG next month to see if its helping.  She was on Keppra for about a year, then they switched to Tegretol.  That had been working great up until about April when her seizures became out of control again.  The Lamictol has so far helped, but she also has a lot (sometimes hundreds a day) of little absent seizures so it's hard to tell if it's stopping those.



  • talisha32
    October 14, 2013 at 10:52 PM

    Have your symptoms gotten worse?  Are you in a lot of pain?  I just want to help her anyway I can.  Thanks so much!


    Quoting N.Carter2001:

    I  am a mom of 2 boys. I am 32 years old. And i have mild cp. Doctor said i would never do anything. Read write have a family.  I feel in love and we have a 5 and a 2 years old now. I take care of my family. I learn to cook. And right now im working on learning to drive.  Some stuff does take me longer to learn. But i do learn.People dont know i have cp when i 1st meet them. I did walk on my toes very bad growing up. I get soars on my feet and my running looks funny. I skip is what  people said it looks like. If you want to talk i will. im an open book. My oldest son has autism and he cant walk.



  • talisha32
    October 14, 2013 at 10:54 PM

    Did you know immediately?  What where his signs?  Has he gotten worse? 


    Quoting nicki.hemingway:

    My son has mild-moderate cp. 



Raising Special Needs Kids

Active Posts in All Groups
More Active Posts
Featured Posts in All Groups
More Featured Posts
close Join now to connect to
other members!
Connect with Facebook or Sign Up Using Email

Already Joined? LOG IN