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Medical Forum / Diseases and Disorders / Epilepsy / March 2005Complex Partial Seizure Disorder in 6 year old
My son, aged 6, has just been diagnosed with Complex Partial Seizure Disorder (through an EEG). He has been having learning problems at school, and also had speech and language problems for many years - the first sign that something was wrong. The diagnosis hit us for six and came out of the blue - we hadn't really seen any seizures as such, but on reflection - a couple of staring episodes, but nothing to really raise any red flags. We are very unsure as to what these seizures involve - we understand some staring, but can children still talk through them? Can they still be doing an activity? I guess as parents we are feeling guilty that we aren't so aware of them. He has been put on Tegretol to control the seizures, and hopefully is now at therapeutic level. Are there any other parents out there with children with this disorder who can offer us some advice? We have so many questions and concerns. Does anybody have experience with their child on Tegretol? Has it worked? How long did it take for it to work when it did? Is your child in any special schooling or in a normal classroom setting? Thank you for any help and advice you can give. Welcome to our group. I do not have a child with epilepsy, I am the one in our family with the seizure disorder. I don't think I had it when I was six, it started probably around 12 or 13 for me and I thought I was just fainting. I wasn't diagnosed until I was 18, so your child is doing well to have parents like you catch this now. Complex Partial Seizures can affect your child's learning, so it is good to be aware of the problem. Educate your teachers and your child's friends so they can all be supportive. Personally I don't have complex partial seizures, so I will let someone else talk on that subject. You can let your six year old know that there are alot of people who have had seizure disorders. I have a book in front of me that is excellent for young children. My Friend Emily, by Susanne M. Swanson, Writers Press Service, Boise, Idaho, 1994. (Ages 5-9). Emily, a self-confident child who enjoys life, shows that kids with epilepsy are just like other kids. Take care, Julie Walton, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org > My son, aged 6, has just been diagnosed with Complex Partial Seizure > Disorder (through an EEG). He has been having learning problems at [quoted text clipped - 17 lines] > > Thank you for any help and advice you can give. Thank you so much Julie for your advice - that book sounds good and I will order that for my son and us. Yes I have heard that many people are not diagnosed with something like this until they are teenagers - it goes unmissed for many years. We are just at that place where we are trying so hard to help him, but feel we are hitting our heads against a brick wall. > Welcome to our group. I do not have a child with epilepsy, I am the one in > our family with the seizure disorder. I don't think I had it when I was [quoted text clipped - 40 lines] > > > > Thank you for any help and advice you can give. I know if you lived in Idaho you could get a free copy from the Epilepsy Foundation of Idaho. But if you want to order the book, the phone number for Writer's Press Service is on the back of the book. 1-800-574-1715. That says to take orders by Visa/Mastercard. For further information and other orders it says to call (208)327-0566 or write Writer's Press Service 5278 Chinden Blvd. Boise, Idaho 83714. According to the back of the book the cost for My Friend Emily is $5.99 with a laminated softcover. I feel your pain. I think that it must be hardest for parents with children diagnosed with epilepsy. What I mean to say is it is more difficult for you to handle than it is for me to handle having the seizures. The stress must be very difficult. I've told this story before but I think you need to hear this encouragement. I was working on a temporary job assignment when the UPS man came in and happened to see someone he knew. So he started to tell him about his latest news that his son was diagnosed with epilepsy. After they finished talking I commented to him that I overheard about the epilepsy and told him that I have epilepsy. We discussed my involvement as a volunteer for the Epilepsy Foundation and how his son was doing. Every time I went back to the attorneys office to work at their front desk and saw the UPS guy I would ask how his son was doing. He is doing very well. It took several months before they got the seizures under control, but he had a very good attitude about it all. Some day you will be able to be an encouragement to someone else who has just been diagnosed and you will be able to share your experience, and YES you will have learned to cope. Best wishes to you and your family, Julie Walton, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org > Thank you so much Julie for your advice - that book sounds good and I > will order that for my son and us. Yes I have heard that many people [quoted text clipped - 66 lines] > > > > > > Thank you for any help and advice you can give. Your reply is really reassuring - thank you so much. Thank you also for all the volunteer work you are doing for others. > I know if you lived in Idaho you could get a free copy from the Epilepsy > Foundation of Idaho. But if you want to order the book, the phone number [quoted text clipped - 100 lines] > > > > > > > > Thank you for any help and advice you can give. > Personally I don't have complex partial seizures, so I will let someone > else talk on that subject. You can let your six year old know that there > are alot of people who have had seizure disorders. Hello LewishamGirl, I just wanted to say that my seizures, like Julie's, didn't begin when I was six years old They began when I was nine, and they were simple absences and more complex partials until I had a tonic clonic in the school playground. My parents had to be told I'd had a seizure, but had no idea about my epilepsy before then. I just wanted to say how much I wish I had parents like you at the age of nine, who actually take a little notice and pay attention to what their children are doing. I used to do strange, absurd and extremely stupid things, both inside the classroom, and out. It was always just dismissed as some kind of a behavioural problem, which I suppose your six year old is probably getting a lot of even today, when the general public should be much more educated in the condition as a whole than they used to be. Doctors say that children can always grow out of their seizures before they're 25 years of age, therefore looking on the bright side of things, we'll all keep our fingers crossed for your 6 year old as he still has a chance. Until then keep up the good work in just taking as much care for him as any mother can. Take care Sofie Hi Sofie: Thank you so much for your posting. Yes it does sound like the same kind of issues - he does do strange things sometimes, that we always put down to behavior. The seizures sound very similar also. Did you eventually grow out of these seizures or are they still with you? I also understand that any type of seizures can develop into much larger ones - such as your case with the Tonic Clonic seizure. Did you have any learning problems at school because of the seizures? and were you aware of having them? > Thank you so much for your posting. Yes it does sound like the same > kind of issues - he does do strange things sometimes, that we always [quoted text clipped - 4 lines] > any learning problems at school because of the seizures? and were you > aware of having them? Hello again LewishamGirl, in answer to your questions, I'll have to tell you that if your 6 year old gets the same symptoms as myself, then you may just have to prepare yourself for the worst. His education may be interrupted not just by having so many seizures that he cannot be present during the lessons, but also because of other symptoms such as being so dosed up with anti-epileptic drugs, that he can't concentrate on the subject at hand, having absences during very vital points in lessons and therefore missing most of whats being said, or even getting a mild bout of memory loss every now and again. As for your other question, I am 39 now, and personally didn't grow out of all my different types of epileptic seizures, but we are all unique individuals, and therefore it doesn't mean that your son will not grow out of his , as he still has a chance. I am very lucky to have an understanding husband and carer who knows that if I spend hours cooking up a meal, and then throw it in the dustbin straight afterwards, he'll simply say "why are you throwing the dinner away Sofie", and make a Pot Noodle or something like a that. Sofie I have partial Compex seizures, as for my self, when a seizure occurs I stare but usually can continue most activities ( I don't drive ). But inside I feel completely drained of energy. Speaking again only of myself, I feel anger ( why is this happenng to me ) I feel fear ( can other people tell that I am different ) I feel shame because I try so hard to be normal but can never attain a level of mediocrity in my life... Aikenraven >I have partial Compex seizures, as for my self, when a seizure occurs I > stare but usually can continue most activities ( I don't drive ). But [quoted text clipped - 4 lines] > life... > Aikenraven It might be under the http://efa.org (Ep. Foundation of America) where they list famous people through history who had, or from symptoms were thought to have had, Epilepsy. Since the idea of 'what's normal' can vary greatly, many of their Artworks, Architecture, or Musical Compositions might never have been created if they only hoped to be 'normal' in their particular era. That's not intending to short-change your feelings (currently?) about being Behind what others might view as Mediocre. Most (all?) of us here, have been there before, or might still slip back there, from time to time. Where we can, we just may try not to stay there for very long, if we can find ways to pull ourselves out of that 'pit' and find positive things we might be able to do that others cannot. The earliest Complex Partial seizures I had, I'd get the swirling Aura feeling and a sour taste or aroma that wasn't there, and realized I had 3-5 minutes to find something cool to drink, or somewhere safe and cool to 'lie down' as I'd lose awareness of where I was or what I'd do once the full seizure had generalized and taken hold. Those ones, before they became fully controlled, I'd come out of with the negative feelings you described -- why me? what did *I do wrong to deserve this? etc. I *did find that the people I associated with, who mattered, didn't really hold my seizures or how I behaved while 'away' against me. Rather I had to depend on them to tell Me what I had done or said before the passing out part, so I could tell me Dr. about it and (later) find the symptoms online that matched what I thought were 'new'. They were new to *me, but not to the charts describing behaviours on the first aid charts for a particular seizure type. Many of them, aside from being concerned what to do while mine were happening, seemed interested when I was 'back' to know how my seizures had started, what they're 'like' from the Inside, and how I saw the outside world while away. I think those parts were related to most of our general interest in 'Who we are' and 'How our Minds work', since those "stepping stones" we take for granted, when we're 'normal', might appear to become Unstable when someone might be having a Seizure, a Stroke or other Health attack.. Sometimes it's when we're more unsteady, that we might learn more than when we are able to spend all our time 'mediocre'? Ideas? G./ Thank you George - that is a really good indication of how my son might be feeling - we really want to try to understand so we can try to help him - but as you can imagine - a 6 year old is not the best person to describe what is happening to them, or really understands - especially if he has been having them for a while he probably just thinks that everyone feels like that. |
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