Where can I get help?

My 16 year old son has been diagnosed with epilepsy since he was 14. He was living with his dad in Africa and was involved in a car accident in April-12, but did not receive immediate medical attention. 8 months after the accident he started having epileptic seizures. The doctors there associated the car accident with the epilepsy and prescribed Phenobarbitone. I brought him over to the UK in Dec-13. He had an EGG scan which found some minor irregularities in his sleep. The MRI scan came out normal. The doctor took him off the Phenobarbitone and prescribed Epilim. He kept having seizures once a month and the doctor eventually increased the dose to 2g daily. He also had seizures every time he had a cold. The doctor believed that if the dosed is increased, if he gets any cold it will not trigger any seizures. That was in August 2014.

In Nov-14, we brought some concerns to the hospital doctor about his memory loss (he tends to forget things easily), his teachers are complaining about his lack of concentration in the class (though he’s performance was of no concern at the time), he’s clumsy and seems absent when you are talking to him. The doctor informed us that she will refer him to a neuropsychologist.

In terms of seizures, all went well until 01-Jan-15. He had another seizure and again another one this morning (13 Mar). I’m extremely worried about his condition at the moment because he has become very forgetful, clumsy and his school performance is below the standard according to the teachers. We called to hospital and were informed that the appointment waiting list for a neuropsychologist is 6-8 months. In the meantime, we are in limbo. My son is writing his GSCE exams this year. We can see that he’s really putting in a lot of effort, but according to the teachers as I mentioned he’s not up to standard. As a mother, I’m drained and have no idea where to turn for help. We went to the GP this morning and she want not helpful at all. She also apparently doesn’t have any clue on what we can do. We just have to wait for the appointment with the neuropsychologist. PLEASE advise or guide me and my family in the right direction.

10 Replies

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  • Hi Vanduu,

    You don't say what type of seizures your son gets. There are many types.

    If you are only thinking of convulsive type seizures it is possible that he may be having different type of seizure in between.

    The descriptions you give of him 'being absent' or 'daydreaming' clumsy sounds to me like the type of seizures that I get which are complex focal with absence and simple focal. These start and effect only a small section of the brain, for me that is the temporal lobe.

    All I can say is what I experience and what my diagnoses has been but I would guess that you have seen a neurologist to get the referal to the neuropsyc.

    A call to the Epilepsy Research help line might be helpful for better information.

    I don't know what leaflets they have or give out but my wife recently picked up an Epilepsy Society booklet called 'Seizures' at a recent hospital visit. On reading through it she was amazed because she kept saying 'Thats you', 'you do that all the time' the result was count of myseizure rate whent up, a lot of the time I was totally unaware of them myself.

    Information is the key and focal (sometimes called partial) seizures are often unoticed because they are brief and not much int the way of physical symptoms. Often they are just staring into space, smacking/licking lips, picking or pulling at clothing, picking up object without knowing why or what for, wandering around in a daze or confused state etc.

    Hope this ramble is of some help and that the neuropsychology appointment comes through sooner rather than later.

    Kind regards

    Sporan

  • Sporan thanks for the info. My son has tonic-clonic seizures.

  • It might be well to check that he is not getting focal seizures as part of an 'aura' that sometimes precedes a tonic-clonic. If they are then learning to recognise them, if they are conected, will allow you and your son to make sure he is in a safe place or be better prepared for the onset of the toni-clonic.

  • Hi Vanduu,

    I have had epilepsy now for 41 years. Initially, I hit a diving board at the age of 14. The seizures started at the age of 16 due to stress with exams, anxiety and hormones. I was having both petit mal (absence) seizures and grand mal (tonic clonic) seizures on a regular basis. It took at least 3 years for the doctors to diagnose my epilepsy due to the constant auras in between, different results regularly and general no control.

    As I have got older, the tonic clonic seizures are longer (35 minutes) but fewer in between, however, sometimes I still get a warning beforehand, i.e. aura. This can be either a blank look, an odor or sometimes a minor numbness/tingling in the foot.

    6-8 months is far too long for you to wait and what I suggest is that you either go to another G.P. for a second opinion, or you try and push the appointment forward advising it is urgent. If the G.P. you are under at the moment shows no interest, then please seek another one!

    Your son needs urgent attention, as he could be having more than one type of seizure! Also all types of medication give their side effects, and perhaps the dosage of the medication he is on is agreeing with him, thus not controlling the seizures and causing more mishap.

    Please keep us updated on the progress you make... Your son needs you at this vital time especially as stress with GCE could make it worse.

    Regards,

    Les

  • Hi Vanduu,

    A slight error in my message when re-reading:

    'Your son needs urgent attention, as he could be having more than one type of seizure! Also all types of medication give their side effects, and perhaps the dosage of the medication he is on is NOT correct or agreeing with him, thus not controlling the seizures and causing more mishap.'

    Please get a 2nd opinion in this regard - G.C.E. exams are also vital to your son's career!

    What also concerns me, the car accident could have damaged a certain area of the brain... Any knock or hit on the head can cause havoc years later. Perhaps he was also stressed living with his father? This might also be a way of telling you that stress is a major cause!

    Let me know how things go.

    Regards,

    Les

  • From my own experiences as a young child I didn't know that I had epilepsy, but when I now look back at my life, I can see what was happening then. I started smoking at 11 years old, and by the first half of my first year at senior school, I was truanting quite bad. And now after 15 years of severe panic, anxiety, depression and heavy concentration loss, that started in 1999 from an anti depressant I was placed on after a grand mal seizure. I can realise that the epilepsy was kicking in then, but I was still to naturally fit for it to cause seizures. And now know it was the nicotine & tar from smoking that was creating the concentration loss, along with the heightened nerve activity. A teenager is going through a very heightened stage of, nerve activity in there lives causing a lot of emotional thought, with the development of there temporal lobe. Cardio respiratory exercise, and relaxant medication in my eyes is a very good thing for epilepsy. It creates strength in the heart slowing the PBM, strength in the lungs increasing the oxygen to the brain, weakening the acuteness of atmospheric emotions. Stopping the feeling of panic in different environments, and raising a lot more confidence in your thoughts. I am T-total and know that caffeine, nicotine are not a good thing for epilepsy. neither are anti depressants

  • Thank you Darrenc

  • I would recommend seeing if you can find an epileptologist (a neurologist that specializes in epilepsy.)

    I agree with other replies--he might be having different kinds of seizures (for example, people having absence seizures look like they are staring into space. They can't remember what happened during the seizure, and those seizures can affect memory just like other seizures can.)

    However, he also could be experiencing side effects from drugs, so I also would question the doctors as to the drugs they are giving your son, as well as the side effects he can expect. If the drugs they are prescribing aren't reducing his seizures, I would get other medical opinions about what has been prescribed, what other medications might be more effective, etc. (It took 7 years and numerous prescriptions before a neurologist happened upon a prescription that controlled my seizures.)

  • It definitely sounds to me like your son is probably suffering other effects of epilepsy, and this is probably more likely than side effects from epilim. I take it, so I know that it has very few side effects and is a very effective medicine. I don't think it effect memory, but seizures really, really do, and that is something you have to live with for the rest of your life because some memories don't come back.

    Your son's epilepsy may be completely unrelated to the car accident, after all, epilepsy is very common and he could be suffering from the same kind as me, juvenile myoclonic epilespy. This usually appears around puberty (it appears to be related to hormones) and people notice it because of the tonic clonic seizures. What is not always so noticable is that it is common for people with JME to also have absence seizures (temporary unconsiousness that leaves you confused) and myoclonic jerks (jerking of a single part of your body - this happens to even people without epilespy as they are falling asleep). I suffered terribly with my memory when I was a teenager and my epilespy was not controlled and I think my grades suffered a bit, but I managed to pick up when it was controlled well when I was in my first year at university (I've been able to carry on and get a PhD).

    Epilim is one of the best drugs for JME - it sounds like at least it is helping your son to some extent, although he is on twice the dose I am. I have also been prescibed a drug recently which I had never heard of before. This is called clobazam and it can be taken as a preventative if you think you are in risk of having a seizure. If you can learn what are the main triggers for your son to have a seizure (for me it is not getting enough sleep, again a common JME thing) or if he has absense seizures or something like that leading up to a T-C seizure, you can take this and it helps.

    It also could be something to do with the car accident, but either way there are many different kinds of seizures and many different types of epilepsy: some people like me can be easily diagnosed with one of these, although the doctor I saw for the first 5 or so years was useless and it was at my first appointment with a new doctor he told me it was obviously JME. It sounds like you and maybe even the doctor you have seen doesn't know what your son had. The rubbish doctor I originally saw was a paediatrician. Insist on seeing a neurologist. Someone who is not a neurologist should not be treating people for epilepsy.

  • Woow...thank you Amy Badd, sporan, Les, BekiP, Darren C and everyone who responded. Your information really shed some light into our situation. Your experiences are all inspiring. My son read all these responses and I saw a smile on his face. He said it's good to know that he's not alone.I now have an action and will keep you posted. I wish You all, all the best.

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