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Also new here - and epilepsy question
  • mango69
    Posts: 967
    Hi there, my son Max is 7 and is currently attending a mainstream school with 22 hour statement. We have just had his annual review and everyone there agreed he fitted the criteria for PDA far more than ASD. I have been reading some of the posts and its just Max all over. Its quite a relief to know there are others like Max as he is not typically autistic and I often feel a fraud when I say he is. It has been helpful from his statement point of view to call it autism as without that we would not have had the support he has needed. We are currently trying to change his school to one with an integrated resource because when he gets bigger and stronger his outbursts are going to have to be managed in a more specialised way. Max also suffers from complex partial seizures due to mesial temporal sclerosis and I always believed that there is a relationship between his outbursts and sub seizure activity but this is so difficult to get the neurologists to agree with. Just wondered if anyone else has heard of this association or has any experience of this. I am going to contact this place in Nottingham and would love to go to the conference.
  • Pamela
    Posts: 205
    hello mango69 and welcome to the pda forum. I have an 11 1/2 year old who has a diagnosis of PDA and IDIC15. She has the whole range of seizures. Her latest EEG showed focal seizures in the right temporal region.....is this the same?
  • mango69
    Posts: 967
    Hi there - yes complex partials arise from the temporal lobe, mesial temporal sclerosis is a scar deep in the temporal lobe, diagnosed on MRI scan and most commonly caused by prolonged febrile convulsions as a child or sometimes birth injury. Max's epilepsy is pretty well controlled on Oxcarbazepine - in fact his seizures now only last about 5 seconds and he only has one every week or so now. Before oxcarbazepine he was having up to 20 a day lasting about 2 minutes and needing a sleep after each one. He has never had a positive EEG though because the scar is too deep to show the activity and he didnt cooperate v well wth having electrodes stuck to his head. Do you find if you miss a dose of her drug she becomes worse behaviourally? Max definitely does, on the v rare occasions we accidentally forgot his medicine.
  • Pamela
    Posts: 205
    Olivia's behaviour is definately worse if we miss her meds. She started having spells when she was only hours old of breath holding, which lasted until she was around six months. Then at 18 momths had episodes of febrile convulsions all of which hospitalised her. Then from 2 onwards she started having absenses, and over the years her seizures have increased she now as simple partials complex partials, drops and myoclonic at night. She has multiple seizures daily and through the night. She is currently on Sodium Valproate, clonazepam and gabapentin and we have midazolam for grand mals or seizures lasting more than five minutes as they generally lead into status and she stops breathing. we have an appointment with a neurologist on the 19th June to see what she can come up with as her pediatrician has exhausted his knowledge. Over the years she is definately regressing and over the last two years has made no progress at all. Look forward to talking more.
  • mango69
    Posts: 967
    Crikey - she has a lot to cope with. I think we were very lucky that the third drug we tried seemed to do the trick. Has she had an MRI? Our neurologist likes a single drug in children as much as possible but sometimes that doesnt work. School must have been/is still tough? - Is she statemented? Which is/was more of a problem - the epilepsy or the PDA?
  • Pamela
    Posts: 205
    Olivia's epilepsy has always been a real problem. Olivia is one of those children with PDA that is actively passive at school so they dont see alot of her behaviours although we recently went to the year 6 open evening for those who are going to year 7 in september and she was her 'true' self. The headmaster was really shocked at what he saw from mild disruption initially to a crescendo of total meltdown! Yes Olivia has been statmented since the aged of 2 1/2. Educationally Olivia is performing at a preschool level. Her motor skills a really weak, and she presents with dyspraxia/dyslexia also. You can read more about idic 15 at www.idic15.org. Olivia has very severe and complex needs so it is difficult to say which has been more of a problem. Where are you in the UK? We live in North Yorkshire.
  • Hi Pamela

    We met ages ago at a play day organised in Knaresbrough - you have Olivia, I have Oliver - 10 years old on Tuesday - also epileptic and becoming increasingly challenging with his pda behaviour!! When the contact group changed sites I got left behind after a couple of unsuccessful attempts ( I am such a computer-phobe). However, tried again tonight after a tough day and re-worked passwords and log-in stuff fairly easily so am back and would be so grateful to hear more from you !!

    Helen
  • Pamela
    Posts: 205
    Helen of course I remember you and Oliver. Glad to see you back. I am still in the same place. Havent been to any more of those meetings in Knaresborough. Olivia was very difficult there, but I didnt feel like I had to leave with her ( which is our usual ONLY option). Would love to catch up more....bye for now.
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