Still in hospital with 22 month year old after a week

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Just some general pointers if possible please don't know where to start. Currently laying in hospital next to my son who 8 days ago had a seizure lasting about 30 seconds. Took him to A and E who at first thought this was a pain reaction as he had a virus and ear infection. Went home with anti biotic but he continued to fit 5 to 10 times across the next couple of days. He was admitted and continued the same pattern of seizing for between 30 seconds and a minute clenching his fists tight and making his legs rigid until he Jerks out of it. He has had a ct scan, blood tests and a lumbar puncture which all showed nothing. Also had an eeg which was clear although he didn't fit whilst having this. So day before yesterday started him on a small dose of sodium something which didn't work and made him twitch badly. Yesterday he had a loading dose of another drug and he has been seizure free for about 30 hours now after continuing on this think the brand name begins with k. The only thing the doctors are concerned about now are his really wobbly legs but they say it's because he is exhausted from the fits and tests etc so hopefully he should be out tomorrow. Lots of questions but mains ones are have the doctors done everything they can now? Is my son epileptic now? Could this have been febrile as he was very poorly before these fits? Does the medication seem right? Can he grow out of them or will he have medication forever? Many thanks

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  • Posted

    Hiya,

    Sorry to hear about son, hope he's all well for Christmas.

    The drug you mentioned was probably Sodium Valproate, which I take for seizures.

    I will try and put things in to place for you.

    An EEG is normally done following an Epileptic Seizure regardless if it is Grand Mal or Petit Mal, it is standard procedure. During an Epileptic seizure, it is normally caused by a 'trigger', this can be anything, whether it is lights or something else.

    CT Scan normally show nothing, again normal.

    There is another scan that can be done which is a MRI Scan, normally the brain, sometimes a full body scan, but your son is very young.

    It is also normal for even an healthy person to have a seizure and can take up to a week to get their full energy back.

    There is also another possible diagnosis, seizures can be Epileptic but others can come under Functional Episodes. These are entirely different, to a paramedic or even a partner it may look like a full Epileptic Seizure.

    The difference with Functional Seizures is that there is 28 verious types, none of which will show any electrical brain activity readings whatsoever.

    The patient will still look like he's in an Epileptic seizure, but the difference is that the patient themselves can hear and see but are totally unable to communicate with anyone, until the seizure subsides enough.

    There are some medications for seizures that can cause tremors, etc in limbs.

    Hopefully your doctor will be able to tell you more.

    But everything aforementioned is correct, because I've had them for over 30 years, and still uncontrolled - but that's due to a complex disorder I also suffer from.

    Anyway, I wish you well and your son - hope you find out more from the doctors, consultants, etc.

    You could mention Functional Episodes, they are not always known initially by many specialists.

    Regards,

    Les.

     

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    • Posted

      Hi Sussexguy,

      I was quite tired last night, and I had taken my bedtime medications - so I was also drowsey, anyway there was a few important factors I missed off.

      You stated your son had a "rigid" spout, this is a type of seizure and comes under the term "rigor", this can be caused by a person's temperature rises quickly, hence the "shivers" cause a severe shaking.

      You also mentioned "febrile", which I am assuming was a "febrile convulsion"? This is not epilepsy, and cannot cause "brain damage" - don't be alarmed by me, mentioning "brain damge". This is very rare, and most hospital doctors would put a person that has a full blown seizure for nearly an hour, at this point the patient would be put in to an induced coma, to calm the seizure, but as I said this is very rare.

      I have had ocassions whereby, some seizures have lasted nearly 2 hours, which is a danger marker - however, because the seizures I had at the time were intermittent, I was just kept in hospital for a longer period of time, for observations.

      A febrile convulsion can start in children as young as 2 years to 5 years, and they will generally grow out of them. They are associated with viral, or bacterial infections which causes high temperatures, which stimulates the release of cytokines.

      Cytokines have a special effect of cells around them, they contain secreted protein - and only released by the immune system. This could account for why your son at the time had a high fever. Hence, the "trigger" of shaking or rigor seizures.

      Hopefully, that should clear up any misunderstandings that you may have, but you should still see an Epilepsy Specialist or a Consultant Neurologist, for a full prognosis.

      Regards,

      Les.

      PS: I am not a doctor, nor do I pretend to be. But I have studied Neurology and Oncology at Universities in the UK. A doctor should be able to give you a correct diagnosis.

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    • Posted

      I feel so rude. I forgot I posted this and didn't receive any reply notifications and you have taken so much care with your reply many thanks. Charlie was out of hospital by Christmas and was put on 2 daily doses of 2.2ml of Levetiracetam. He has been seizure free up to this day. I think I checked back here tonight because he seems to be a little poorly tonight and it has made me paranoid that he will have a seizure as this is how it first started. I am also concerned he is very wobbly and unsteady on his feet although all the doctors we have seen don't seem concerned by this. He has had quite a few follow up appointments including 1 where 9 doctors were presents including some from St Thomas hospital. Suppose my biggest question would be is he epileptic or could this have been some sort of fever or illness that triggered the seizures. It seems hard to get a certain diagnosis.

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  • Posted

    Hello. Have you actually been given a diagnosis? My son was diagnosed aged 3 and we were told it was epilepsy before any scans. He doesn't have a jerkey type seizure though, he goes ridgid and puts his arms out to the size for about a minute.

    Anyway, he started on medication. Within a week he never had another seizure. He is still on medication, he's now 7. They want him to try to come off it.

    So if it is epilepsy then it could be controlled by medication. Also everything I've read says if they are diagnosed before age 3 they are more likely to grow out of it than those older than 3.

    I hope you get some answers. Go ask your consultant. Ours are always helpful. All the best.

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    • Posted

      Hi sorry as above I didn't realize I had any replies! I guess his diagnosis is epilepsy as he now has medication that has meant no fits since the Christmas episode. Like yourself a little confused if this is a childhood thing, something triggered by fever or illness or a lifelong Condition.

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  • Posted

    Firsty, im really sorry to hear what youre both going through.

    I think you need to make sure you get a folow up appointment and ask them. before you leave if theyre giving an epilepsy diagnosis.

    From what ive read on the epilepsy websites, a clear eeg doesnt mean you dont have epilepsy.

    My daughters consultant explained everyone has a seizure threshold and some peoples are lower than others. She has idopathic absence type but the potential for generalised as the activity is throughout her brain.

    My other daughter had febrile fits and we ended up admitted many times for tests for various illness but ironically never an eeg!

    Please ask to.speak to the doctor before youre sent home.

    Wishing you the best

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    • Posted

      Hi there thanks for your reply. As in above replies diagnosis is epilepsy. I may be in denial but still not convinced, guess I can't understand why he had 10 fits a day for almost a week out of the blue.

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