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3 1/2 yr old with frontal lobe epilepsy

Thu, 01/25/2007 - 17:13
Our 3-and-a-half-year-old daughter Anna was diagnosed with frontal lobe epilepsy in November. She started having seizures when she was a baby (we now think), although we did not realize it at the time, as they always occurred at night-time, and we assumed they were just a quirk. The first thing we noticed was that about a year and a half ago, she began sleeping very badly, and waking often in a rage. After her first daytime seizure (which occurred at about the same time), we visited our local doctor (in the UK) and were referred to a paediatrician. Her seizures consisted of her gasping slightly as if she was out of breath, then trembling for a few seconds repeatedly for a minute or two, with short gaps of a few seconds in between. The paediatrician said that what we described did not sound like seizures, and suggested we come back in three months. In the intervening time, she had very few seizures that we noticed, and a doctor friend who happened to witness one said that she did not think it was anything to worry about. When we returned to visit the paediatrician, therefore, in March 2006, we were happy for him to discharge Anna. Over the next few months, she continued to sleep very badly, waking between two and six times every night, but the seizures were only sporadic. Then at the end of the summer, we suddenly began to notice her staring oddly at times, as if she was 'seeing something'. We became very concerned after we tried to talk to her during one of these episodes and she seemed unable to move her mouth, eventually saying something in a very unnatural way. We returned to our local doctor, who suspected petit mal, and were referred this time to a paediatric neurologist. By the time we came to see the specialist, the episodes had evolved again back to the clusters of short trembling, lasting a minute or so, and the specialist felt that the individual trembling episodes (still only a few seconds long) were too short for petit mal. Anna was sent for an EEG, and in conjunction with some video footage that we had managed to obtain of one of her episodes, the specialist immediately diagnosed frontal lobe epilepsy. He prescribed tegretol, in increasing doses, and although with each new dose we have had a temporary respite from the seizures (now occurring as one to three clusters of ten or so a day), after a few days they always kick in once more. In the run-up to each seizure, Anna's behaviour is difficult and she seems unable to concentrate properly. Her speech also deteriorates. After each seizure, it is as if her mind has been cleared, and she is suddenly more lucid, calm and easy-going - although sometimes also very tired and needing to sleep. Having reached the maximum recommended dose of tegretol (15ml per day), our specialist has now suggested that we add clobazam as well, although we are also experimenting with pyridoxine (vitamin B6 - 25ml twice a day) for a couple of days before introducing the clobazam. Our specialist has told us that frontal lobe epilepsy can be very difficult to treat, and we would be interested to hear from anyone who has encountered similar difficulties with tegretol but has had more success with other medications. Anna's MRI scan was normal, but the specialist has told us that nonetheless surgery might be an option once we have exhausted all the possible drugs and tried VNS and the ketogenic diet. It has been an exhausting and emotional time for us all. Anna has had good days when the medication seemed to be helping, but the seizures always seem to come back and her behaviour deteriorates. She manages to cope (just about) with going to a playgroup 3 times a week, but we worry about her starting school in September.

Comments

hi- my dd (9) was diagnosed

Submitted by ac420ec on Mon, 2007-01-29 - 11:48
hi- my dd (9) was diagnosed last year w/ fle (she mainly only has seizures at night) She went several years misdiagnosed w/ a sleep disorder. She has never tried tegretol. She started w/ Trileptal which is usually the first line drug in nocturnal FLE which helped a little. She now takes that as well as Keppra but is not completely controlled. She still has several brief seizures each night. She failed Lamictal as that increased her seizures. My dd's first seizure (that we knew of) started when she was 5 in Kindergarten. Our school experience has been pretty good. It takes her a lttle longer than others to get work done and we try to be ultra organized and stay on top of things since she has slow processing issues and can be forgetful (which I attribute to her meds). I hope this is helpful to you. Good Luck on achieving control. My dd's respomse to meds is similar to your daughters. Works for a few weeks and goes back to normal. You can check out my blog (nocturnal frontal lobe epilepsy) on this site if you are curious about our experience re:dr.s ,meds,etc. Emily

Re: hi- my dd (9) was diagnosed

Submitted by tan_the_fan on Sun, 2007-09-30 - 15:47
I use to have really minor simplex partial fits when i was younger... At 12 I was finally diagnosed with E officially, as my mum too thought it was just quirks of a absent-minded little dreamer (and she's a nurse ;) ) From 12-19yrs i was on tegretol, and it did nothing for me... They pumped it up to max, and it didnt even vary my fits or frequency. In fact my fits actually deteriorated towards the end... I then swopped to Keppra, and it seemed to be alright in the lower dosages. It still didnt deter my fits very much though, and as they pushed it up, i found the keppra making me very nautious/lightheaded and getting extremely aggressive in behaviour... My whole family noticed that one! ;) I'm now 22 and currently on Lamictal, and it seems to be a lot better for me than either Tegretol or Keppra... It's managed to significantly decrease the amount of fits i have, but at the same time i now have more intense fits (although this can probably not be directly related to the meds as much as my condition). It took my 6-10 fit clusters a day down to 3-5, which is already a good improvement for me. I too have most of my fits either at night or when waking up, and they tend to happen in clusters of 3-4, 30 sec each with a small brake inbetween. Unfortuntaly none of the meds i've been on have been succesful enough to give me a decent life standard, so i'm putting my hopes on front right lobe surgery... If they can determine the centre.. Fingers crossed ;) Hopes this helps!

Re: 3 1/2 yr old with frontal lobe epilepsy

Submitted by my baby suffers on Wed, 2007-02-07 - 23:06
I am dealing with school issues, I could go on and on, these seizures are so complex and there are so many different ways to spot them it is really hard for teachers to spot and empathize with the students. My child is 5 and kinder, soooo many issues with meds and seizure behaviors the teacher doesn't want to deal with. Same frontal lobe issues (partial complex seizures). Morgan's MRI was normal and until last year they had found only tracks of seizures and I spent 6 mos weening her off meds last year to get a EEG and now they have a footprint and the Neuro acts like it is no big deal. I am having major behavioral issues with meds. Morgan gets along with other kids fine, but the classroom is very structured and she finds it difficult to sit still(meds), and has a multitude of lead in "ticks" and "ignoring the teacher" spells (seizures). Her teacher because she is not educated thinks that Morgan just isn't minding her or paying attention. Despite repeated attempts to give it to her in black and white. The teacher just won't hear of it and says that Morgan is just a bad child. my child is being labeled bad, even though it is not her fault. School??? I'm thinking home school!!!!!! If I was still married I would be!!!!! Sorry :( If you have questions you can E- mail me I would love to talk to someone with similar circumstances.

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