Hi, my 7 year old daughter was recently diagnosed with silent or Rolandic epilepsy and ADD. Does anyone else have a child with this?

She is on 200mg Epilim every 12 hours, but how soon can we expect to see improvement in her concentration. And why does my child not display the characteristics of Rolandic epilepsy like tingling sensation in mouth, drooling and facial paralyses? Her EEG showed that she had 4 seizures in 21 minutes and I'm really a bit lost and scared. I have no experience with epilepsy and have no idea if any decisions I make WRT her treatment, schooling and after school care is right. Feels like the blind leading the blind at this stage and I am suffering to work through all the emotions related to being told that my child has epilepsy. I just need to know that I am not failing her terribly... :(

6 Replies

oldestnewest
  • Hi Isobel

    I am not a doctor or specialist but have well controlled epilepsy. I have pkenty of experience with epilepsy having started and run a support group for 26 years. I am also actively involved on the National Board of Epilepsy South Africa.

    Unfortunately I do not have much experience in Rolandic Epilepsy. However, every case is different and whilst some may experience noticeable symptoms such as drooling etc, others may not. The same goes for medication and it possible that the medications may have helped her with the symptoms to an extent. If you are concerned, it may be an idea to get a second opinion from another neuroligist to put your mind at rest. You can only do the best you can, which I am sure you are - most importantly she is under treatment and schooling.

    Schooling: I have often recommended parents to try and keep their children in a "normal" schooling environment rather than a protected environment, provided the school knows about her condition and is equiped to handle it. If she requires special needs etc then seek a special needs school. If possible, try not to over protect - in the time I ran the support group, I saw a number of cases, where parents over protected and literally spoke for their children, which does not help them develop, when they do need to stand up for themselves. An example a man of 53 years, whose mother practically spoke and did everything for him - but when she died, he realsied his freedom. I was shock when he told me how he despised her for controlling his life as he now had to learn to make serious decisions - sadly he has had to employ someone to care for him. Regards Tim

  • It is not my intention to discourage you but remember every treatment gives you a different side effect and it takes a very long time to estimate the correct treatment drug for your child. I have been diagnosed in 2007 and only now last month I have found a drug that agree with my system. It was a long and very unplesant and costly road till now. Don't loose hope just try and find yourself a good neorologist.

  • Thank you both for your replies. What is shocking to me is that we were not referred to a neurologist at all and have only been working with the GP and pediatrician. We have our one month follow-up tomorrow afternoon at which time I will ask the pediatrician if we can have her looked over by a neurologist as well.

    As for schooling, she is in grade 2 in a main stream school, but her teacher is excellent. She has been a teacher for 34 years and has a remedial background. I was also quite shocked when the teacher told us that she thinks Leisha gets silent epilepsy, even before we went for the EEG. My daughter is also allowed a tiny bit of slack at this stage, where the teacher told us, that if we see she Leisha is too tired to continue with an assignment, we can stop with it and just let her know. I don't think it is necessary for special needs schooling at all.

    I think my biggest problem is the emotional mumbo jumbo related to the whole diagnosis and I feel like a failure as a mother who has defective genes. To explain that statement: Our first child died of a heart condition, the second has astigmatism and only about 25% sight and now my little girl has epilepsy and ADD. Emotionally she seems fine and affectionately calls her seizures "ZAPS" (:D). She says it makes her extra special like the girl in her class with only 9 fingers. The kid is hillarious!

    I know that a year from now I will probably look back at all of this and wonder why I felt so down about it, but for now I am not in a very good place and second guess myself constantly.

    Snuffels, thank you for your advice on the medication. She seems to be doing fine on Epilim for now, but I guess only a follow-up EEG will really show how effective it is, since she has no visible symptoms during seizures, other than looking a bit dazed. Should I ask for another EEG or is it routine that the doctors request it?

    Another question about Epilim, apparently the company who produces Epilim has made a clone of Epilim which is exactly the same thing (not even generic), it just costs R40 cheaper. Do either of you know if it is safe to use the clone? I work in an industry where we do the testing of new drugs and logically I know that it is probably the same thing, but since my child is involved, I wasn't sure about it when offered the clone by the pharmacist. So I took the more expensive original... :(

  • I fully agree with snuffels. Just can't believe that the GP still haven't referred you to a neurologist. Do find a neurologist and good luck.

  • Hi Isobel, I feel your pain and frustratation. I wish there was a step by step guide on what to do and who to see and what to take etc etc. Where do you live? I can recommend some excellent paed neuro's if in JHB/PTA and also chat to a mom in CT who has an excellent support team. You are not a failure as a mother, you are doing everything and the best you can and you will soon come to realise and be surprised as to how many moms have children out there with epilepsy and even worse than your child, which gives you some reprieve. Take each day as it comes, I am also new to this whole game as my son Andrew, who will be 3 on the 10 March, started having seizures end of Oct last year and has only this year been diagnosed with Doose Syndrome. It is so scary how many different types of epilepsies there are but you must insist on seeing THE best neuro if you can! I'm not sure on a clone drug of Epilim, but my son is on Convulex which is a newer drug than Epilim but also made from valproic acid and they say makes the child less ADD like, so perhaps ask about Convulex. What ever you do, before they just add another drug on to your child, insist they do bloods to check her epilim levels and make sure they are in the therapuetic range as our paed neuro never did this and we were sitting on 3 drugs until a visit to the hospital in Jan put us in the hands of a very good paed who worked with us on getting Andrew's epilim levels right. My worst are all the behavioural side effects of these drugs and their inetractions with each other, so be very very sure you must be adding if only vitally necessary. Also look in to the ketogenic diet or modified atkins diet, these have proven to work wonders with seizure control. I can also recommend some dieticians to help you with this but they do need approval from your paed neuro. In what ever way I can, I will try to help you as best I can xx

  • Hi Isobel - how is it going with your daughter - my son is in grade 3 and although he has no rolandic symptons and in fact has other sort of symptoms (visual disturbances etc) and recently seizures that were not rolandic in nature - he does struggle with keeping up in class though and his reading is below where it should be - we are working on all that - he was on Epilim but we are now on Tegretol - hoping it will cover his visual disturbances (ocipital lobe seizures) that Epilim didn't cover .

You may also like...