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Hi, im reaching out to see if there are any parents of children who suffer Epilepsy x

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Rach89x
Rach89x Community member Posts: 2 Listener
My daughter is 7 years old, she got diagnosed epileptic in October last year, we are struggling with the NHS system, in the aspect of medication and support, can anyone offer any help please x

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  • Richard_Scope
    Richard_Scope Posts: 3,637 Scope online community team
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    Hi @Rach89x

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  • zak100
    zak100 Community member Posts: 10 Listener
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    Hi RACH
    My daughter was diagnosed with generalised epilepsy on 2012. She has been on 3 different meds and none have worked. It is very stressful as she can have a tonic clinic seizure at anytime. She has no warnings. She is on lamotrigine at the moment. She was first put on Keppra which had a terrible affect on her  behaviour. She was aggressive, angry and wouldn't listen to me. She even tried to jump over our balcony. I have often thought does epilepsy itself present with behavioural problems? I wish you all the best with your daughter and hope you will find a medication to control the seizures. My daughter has them maybe twice or three times a month. 

  • Rach89x
    Rach89x Community member Posts: 2 Listener
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    Hi, thankyou so much for replying to my post, your situation sounds very similar to mine, my girl got given hat keppra and it caused to many bad symptoms including memory loss, behaviour yes that also got massively effected, she is now on lamotragine 75mg in a morning and 75mg at night, they gave us another to try after a hospital admission recently of 15 seizures in one day, I declined this new medication as I’m not keep giving her all these drugs, I’m having to find £400 to pay for a private MRI scan as the hospital won’t facilitate her, I’m struggling with DLA for her too I feel there is no supoort groups for children with epilepsy and no were to turn for help. I’m glad I’ve come across this site :)
  • zak100
    zak100 Community member Posts: 10 Listener
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    Hi RACH. My name is Kay. I thought it was normal procedure to have an MRI if your child has a seizure. This was the first thing they did with my daughter. They then gave her an EEG which confirmed epilepsy. My daughter was on DLA and when she was 16 she was put onto PIP. I got the access or to come to our home. As my dd didn't have a good night. She was sleeping when she came for as you know lack of sleep can cause seizures. I told her about my daughter's condition and how it affects her. When dwp wrote back to me they awarded her 0 points. I was very upset and asked her Consultant to please write a letter for me which he did. He pointed out all the dangers and how she must be supervised most of the time. To me personally it shouldn't matter how many seizures a child has it's the unpredictability of them if they are uncontrolled. That atos access or also lied on the form. I put in a mandatory consideration with her Consultants letter. They wrote back awarding her enhanced mobility and low care. I am contesting the low care as she needs supervision most of the time. They also gave her 0 points for budgeting decisions  which is rubbish. My daughter doesn't have the mental capacity to budget anything. She has underachieved in school in all her subjects. Her concentration and memory are badly affected. I am her appointee. She behaves more like a 12 year old and doesn't know how to be responsible. You have to fight for what your daughter is entitled to. I hope your daughter has a good Consultant who will do a good letter for you. This is very important he points out the dangers to your daughter if she has seizure. 






     
  • Chloe_Scope
    Chloe_Scope Posts: 10,581 Disability Gamechanger
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    A warm welcome to the community @Rach89x and I hope you find the community a supportive place. Please feel free to look around and if you need anything else then please let me know :)
    Scope

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