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Confusing seizure patterns and symptons in 11 yr old

Thu, 08/17/2006 - 23:44
Topic: Diagnostic Dilemmas and Testing
At the moment I'm probably feeling like so many other people on this website do or have felt - desperate to try and define what is going on with my daughter. She seems to have some of the classic symptoms but others that don’t seem to fit the ‘mold” She's 11 and about 8 months ago out of the blue' had her first 'seizure' and since then has had them a minimum of every two weeks. Three EEGs have been normal as has an MRI, and even a five day telemetry study. We are on our third medication variation, and while the last medication (Keppra) has seemed to change the nature of the seizures they are still happening. Withe the seizures there are similarities and variations between the, Some morning she gets up and I can tell she will have a seizure that day - she's irritable, has a low grade headache, is distracted and seems unable to focus on anything 'external' - but she will still be fully functioning and go to school or sport or whatever and be ok. The most common pattern when she is bout to have a seizure is that she withdraws from interacting and 'gets the look' where she isn't focusing, bit also either gets very frighted and at the same time determined as if part of her is battling to stay alert. She can normally say at this point that she's sick but very quickly her speech will slur and then move to where she either can't get the words formed or is 'babbling’ and can't be understood. Sometimes the seizures end at that point ( this is normally about 5 minutes) and the strange thing about this is that she seems to think sometimes she can 'focus' herself out of the seizures getting worse (although I have only seen this appear to happen twice). But more often it will move to where her coordination and body strength fails and she starts jerking first one hand (there is debate about which side starts) and then both. her eyes are closed but 'flicking' underneath the eyelids. Sometimes she seems to have rapid pulse and start sweating but not always (Question - would this still be complex partial not tonic clonic?). She seems to retain some consciousness though - once we moved her arm and she briefly stopped jerking that hand, and at times she seems to respond to questions as if she is trying to open her eyes and speak but can’t. These seizures normally last about 10 minutes. Sometimes though she rapidly moves to all four limbs jerking, 'tight' shallow breathing and being fully unconscious ( I presume these are the more standard tonic clonic). When it gets to this point the total ‘down’ time can be up to 25 minutes - although when we have called the ambulance she is normally starting to come around by the tmi they get here. Do these symptoms and in particular the ‘variations’ sound like anything anyone else experiences? I would just love to somehow try and understand what is happening.

Comments

Re: Confusing seizure patterns and symptons in 11 yr old

Submitted by tlh64 on Thu, 2008-07-24 - 21:06

Hi.

      Has your daughter started to have her period? You mentioned that she is 11 years old and I thought she might have entered puberty. Is there a correlation between her monthly cycle and her seizure pattern? Some forms of epilepsy can begin with puberty. Women with seizure disorders, especially partial seizures (which sounds like what your daughter has) tend to have increased seizures during the week before, during or after their periods. I was advised to keep a journal of my seizures to help identify possible triggers (and to help get diagnosed). Put down the symptoms and information about where in her monthly cycle she is and what she was doing before the seizure struck. Your daughter's seizures sound like mine, which are complex partial seizures. They almost exclusivly occur just before or during my period. I probably had simple partial seizures for many years and didn't realize it. I didn't get the complex seiures until I had an ovary removed and that undoubtedly changed my hormone levels. I am told that I sometimes mumble during my seizures. I am also told that I will also sometimes get sort of stiff. I also have times when I will have my hand still and all of a sudden my finger will pop up on it's own. My doctor thinks this is some sort of seizure. You came to the right place for info and support. This web site is very helpful tlh64

 

Hi.

      Has your daughter started to have her period? You mentioned that she is 11 years old and I thought she might have entered puberty. Is there a correlation between her monthly cycle and her seizure pattern? Some forms of epilepsy can begin with puberty. Women with seizure disorders, especially partial seizures (which sounds like what your daughter has) tend to have increased seizures during the week before, during or after their periods. I was advised to keep a journal of my seizures to help identify possible triggers (and to help get diagnosed). Put down the symptoms and information about where in her monthly cycle she is and what she was doing before the seizure struck. Your daughter's seizures sound like mine, which are complex partial seizures. They almost exclusivly occur just before or during my period. I probably had simple partial seizures for many years and didn't realize it. I didn't get the complex seiures until I had an ovary removed and that undoubtedly changed my hormone levels. I am told that I sometimes mumble during my seizures. I am also told that I will also sometimes get sort of stiff. I also have times when I will have my hand still and all of a sudden my finger will pop up on it's own. My doctor thinks this is some sort of seizure. You came to the right place for info and support. This web site is very helpful tlh64

 

Re: Confusing seizure patterns and symptons in 11 yr old

Submitted by jskilroy on Sat, 2008-07-19 - 22:08

I hope you both see this message it has been a while since your posts.  I am a 46 year old women.  I have had Epilepsy since I was 13 (diagnosed at that age).  My Mother, two brothers and two of my nephews have Epilepsy.  I have more experience with seisures and probably know more about them then many medical pros ( i know that is a bold claim).  Everything i have read in the previous two posts has either happened to me, one of my family or I have read about in the book my Dr published of different seisures and how badly the people who have them have been treated.  That's the good news, your daughter is not crazy the DR's just don't have an answer - seek alternative treatment.  The bad news, it took me almost 25 years to find a medication that worked on my "weird seizures" and heading into medapose helped alot as it did with my Mother.  More good news I earned a bachelors degree, a graduate certificate and eventually became a bank officer.  It was not easy.  One executive tried to have me fired "She can't be rolling around on the floor like that".  I lot of things happened like that, but it didn't kill me and it won't kill your kids either.   

The best advise i can give you is never doubt your children no matter how strange the seizure may be.  Secondly,  be realistic about their goals (no tightrope walking), but yes to independent living and driving.  I did both very successfully.

I hope you both see this message it has been a while since your posts.  I am a 46 year old women.  I have had Epilepsy since I was 13 (diagnosed at that age).  My Mother, two brothers and two of my nephews have Epilepsy.  I have more experience with seisures and probably know more about them then many medical pros ( i know that is a bold claim).  Everything i have read in the previous two posts has either happened to me, one of my family or I have read about in the book my Dr published of different seisures and how badly the people who have them have been treated.  That's the good news, your daughter is not crazy the DR's just don't have an answer - seek alternative treatment.  The bad news, it took me almost 25 years to find a medication that worked on my "weird seizures" and heading into medapose helped alot as it did with my Mother.  More good news I earned a bachelors degree, a graduate certificate and eventually became a bank officer.  It was not easy.  One executive tried to have me fired "She can't be rolling around on the floor like that".  I lot of things happened like that, but it didn't kill me and it won't kill your kids either.   

The best advise i can give you is never doubt your children no matter how strange the seizure may be.  Secondly,  be realistic about their goals (no tightrope walking), but yes to independent living and driving.  I did both very successfully.

Re: Confusing seizure patterns and symptons in 11 yr old

Submitted by chrisbab17 on Thu, 2006-08-31 - 17:56
We know exactly how you feel!!! My daughter is 20 - she was diagnosed epileptic at 15 - grand mal seizures - was put on meds - tried several none completely controlled them but she moved from grand mal to partial seizures after a few years. Until 5 weeks ago she was only having 5-6 a week - suddenly 5 weeks ago they completely changed. She was having 20 a day! They started with lipsmacking, head lolling to the side (no specific side), eyes closed and fluttering or open and rolling upward, then she was babbling or sometimes talking in wierd language - sometimes laughed hysterically, sometimes cried got upset etc. these were lasting anything from 5 - 15 mins. After being admitted to hospital her meds have been changed - she is now on Topimax, Keppra AND Phenyton!! The docs are not convinced all her symptoms are due to epilepsy???? Think some of them are phycological???But they are treating as partial seizures although they say they are not typical symptoms. The seizures still haven't stopped - they have now changed in nature again - having 5 or 6 a day but can last for anything up to 40 mins. They start with her going quiet and giving a strange 'look' - brows down - then she usually hides her face either with hands, pillow etc, she then gets upset either angry or scared , shouts , cries or yells often bites herself or grabs anything nearby and bites it or puts it in her mouth. She often talks 'babyish' and can move about, walk sit, stand etc while in this state and also responds to us. She says she is aware of everything throughout the seizure but cannot 'stop' herself acting strange. When she is in this state it is like handling a mentally retarded child. Within 5 weeks she has gone from being a 'normal' 20 year old holding down a part time job, having a good social life to this! We are currently waiting to be seen by a specialist consultant in another hospital - I just want my daughter back! So I completely sympathise with you - why can't anyone tell us what is happening inside their head?

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