Cerebral Palsy
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Stress seizures at 14 head rotating 20-30 a day

louandmeglouandmeg Member Posts: 4 Connected
edited September 2019 in Cerebral Palsy
please help! My daughter has ataxic cerebral palsy, dystonia, speech and language delay, high high frequency hearing loss(recently fitted and operated on for cochlear implants) and epilepsy however been taking Carbagen carbamazepine for many years to control them, she also takes clonidine, baclofen and circadin to aid sleep. We have had to change to Tegretol Carbamazepine and since the change I’m medication she has been having what is diagnosed as stress related seizures, they are progressively getting worse, head swaying, arms shaking, eyes go funny as she explains all different colours she falls and her head goes down, these can last 60 seconds to 5-6 minutes she does not know where she is after the seizure etc I’m just wondering if anyone else has had this affect from taking Tegretol. We are trying to source Carbagen from the US through our local Drs 

Replies

  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    What does the neurologist say? Maybe you should be asking him if she can try out new seizure medication? When is your next appointment? 
  • louandmeglouandmeg Member Posts: 4 Connected
    We are trying to source Carbagen from the states and the doctors at surgery listening I’m trying to see if anyone else out there had experienced this with or without meds it’s awful going through this for her and everyone around her she’s so strong and keeps going but it’s so debilitating 
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    My only suggestion is to contact the neurologist to bring forward your appointment. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,420 Scope community team
    Hi @louandmeg
    A warm welcome to the community. I'm sorry to read that you are all having to go through this especially your daughter. From what I have read there are side effects to taking Tegretol as with all medications. Does your daughter have an epilepsy nurse?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • louandmeglouandmeg Member Posts: 4 Connected
    Hi Richard.

    my daughter does have an epilepsy nurse, however as they say this is not epilepsy it does not involve the epilepsy nurse. We are trying to source Carbagen carbamazepine as when I sourced the last lot our local Lloyd’s pharmacy Carbagen everything reduced to 2 small episodes in morning and 2 at night we only had 42 tablets which only lasted a short time as you can imagine the amount she takes a day. When back on tegretol they went back to 20-30 a day. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,420 Scope community team
    You are trying to source Carbagen carbamazepine through your GP? 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • louandmeglouandmeg Member Posts: 4 Connected
    Hi
    We have sourced from the States however we have to go through doctors etc to have them shipped over. 
    Lots of hurdles 


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