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Medical Forum / Diseases and Disorders / Epilepsy / September 2006Child with nocturnal frontal lobe
My Daughter Victoria is now 5 but 3 when she had her fist seizure. This is my concern: First why am I allowing my child to be a lab-rat? We have tried 4 different meds. 1Tegratol, Our side-affect; Crazy child, unable to concentrate, unable to learn, Couldn't be told "NO" with out having a temper-tantrum, one minute happy, then the next screaming and throwing stuff, to crying in tears and saying " No one loves me, No one Likes me.", 2Tegratal EXT,Our side affects; Crazy child, unable to concentrate, unable to learn, Couldn't be told "NO" with out having a temper-tantrum, one minute happy, then the next screaming and throwing stuff, to crying in tears and saying " No one loves me, No one Likes me.", she stabbed her grandfather with scissors. HUMMMMM see a difference. 3Keppra, Our side affects; Well should i say them for a 3rd time. the same! Although we did have a little more concentration but melt-downs were really bad. 4Lamictal, Our side-affects, A great kid until we started 30 mgs a day then we see a very depressed child, Temper-tantrums, but she does have concentration, and can learn. But her temper tantrums would make it impossible to send to kindergarten. Those are the for meds we have tried and that have failed. My child's Seizures: she has had a total of 8 seizures but 4 of those were provoked from being taken off medicine. This is what the look like. First they only happen between 5:00am-7:00 am, so morning seizures. Ok she stretches her whole body and arches her back, then she shakes all ligaments, while blinking her eyes uncontrollable, making a choking sound, and chewing her tongue, that lasts for 1 1/2min. After the convolutions are done she is unconscious for about 20 min then snaps out of it not remembering anything, and acting normal. My Child is a normal Child She has no other medical problems. I wanted to add that while she was off her meds, she did not have any of those side affects. She was a joy in Pre-K when she was not on the meds. When she was on the meds she was tested to see if she could join a regular kindergarten class, they determined the she would have to be in Special-Ed. When they tested her off the Meds they told us she would be able to join a regular class. Also not to be mean because doctors are useful in any situation. But what do they really know about seizures and how they affect the brain?and what in the medicines treat the seizures? I wanted to add to this an update..... Since talking to the doctor about getting an over night EEG. We got it! The over night EEG showed that she is having small partial seizures through out the night. Anywere from 2-8. They are located in her C3 (left by her ear on frontal lobe). She has since been diagnosed with Frontal lobe nocturnal seizures. It has only been 5 days since we started her on "Tripital"<might be spelt wrong> We can't say much about how it is going to do? We asked the Doc about Dilantin She said the don't recamend it. We also asked about Phenobarbatol, she said thats more fo babies. Thank you for listening. And sorry for posting twice. > We asked the Doc about Dilantin She said the don't reccomend it. We also > asked about Phenobarbatol, she said thats more for babies. Did your doctor tell you why they don't recommend Dilantin? I had my first seizure as an adult, but my doctor, a general practitioner, tried me on other drugs first. When we finally got around to trying it, he said he had avoided it because of the known side effect, gingival hyperplasia, or gum overgrowth. He thought a young woman would want to avoid a cosmetic issue. Humph! Dilantin worked well for me, and regular dental cleanings kept my gums looking normal. It's one of the oldest and best known meds. Phenobarbitol is known to have a sedative effect, which would definitely not mix well with learning. Best wishes, Liz > > We asked the Doc about Dilantin She said the don't reccomend it. We also > > asked about Phenobarbatol, she said thats more for babies. [quoted text clipped - 13 lines] > Best wishes, > Liz Yes the doctor said that the dilantin cause teeth problems and could cause facial problems, and that they dont normally use it in kids. thank you for your reply. April > > > We asked the Doc about Dilantin She said the don't reccomend it. We also > > > asked about Phenobarbatol, she said thats more for babies. [quoted text clipped - 17 lines] > thank you for your reply. > April It seems strange that they'd start first on Tegretol (used most often on adults because of risk to calcium (bone and tooth) development), Keppra and ?? (the third one). Those were often listed here as used in adults more often than children. I have seen a few here who used Keppra sprinkles? on food, but don't recall the szr. types their child had (this was about 1998). As an adult I was started on Dilantin (that didn't work for me), but was told it's often used first since it's older, longer studied, and they know what side effects to look for. Because the development costs were recovered 60+ years ago, it's also cheaper if it happened to work (about 25% of the cost of what you paid for those other meds.) . The people who once posted here using Phenobarbitol lived in the UK and haven't posted for some time. It also is an older med. but works for some types of seizures, but not necessarily all types. There may still be some people reading here who are using it who can comment. /G. > My Daughter Victoria is now 5 but 3 when she had her fist seizure. This > [quoted text clipped - 61 lines] > > Thank you for listening. And sorry for posting twice. The correct spelling of the new medicine is Trileptal (Oxcarbazepine) > > My Daughter Victoria is now 5 but 3 when she had her fist seizure. This > > is my concern: [quoted text clipped - 48 lines] > > Since talking to the doctor about getting an over night EEG. We got it! > > The over night EEG showed that she is having small partial seizures ************************************************************************************ > > through out the night. Anywere from 2-8. They are located in her C3 > > (left by her ear on frontal lobe). She has since been diagnosed with > > Frontal lobe nocturnal seizures. ******************************************* > > It has only been 5 days since we started her on "Tripital"<might be > > spelt wrong> We can't say much about how it is going to do? [quoted text clipped - 5 lines] > > The correct spelling of the new medicine is Trileptal (Oxcarbazepine) G. Oxcarbazepine is part of the same family *I think, as Carbamazepine (Tegretol). Note *I am not a Doctor, but your Pharmacist might be able to give you a printout or a website to look up when those are used. Most of the stuff you've had so far, are commonly used with *adults. You might want to also search under either http://efa.org and see if there's anything there or via Google about Nocturnal Seizures, and see if the symptoms might look similar to some of what you've been dealing with. Both Tegretol or Tegretol Extended Release depend on a balance between metabolism and body weight, and dosage (thus why it's not often used with children). And if they stopped either of those promptly or she missed doses could produce a withdrawal type seizure, that can be worse than what you're controlling. Others (I hope) will comment on whether either Lamictal or Keppra should be used on a child 3-5 years old. Without a medical licence, I have my own opinions. I hope someone still reading this group has experience **with children and medications, or what a Frontal Lobe seizure looks like. Several of us have had Simple Partials, and even Nocturnal seizures, as those can come with several of the seizure types. And I haven't seen the 2-3 parents( who had kids taking medications) post for a long time. Maybe they're still reading the group. Did you try looking through Google or another search engine? With Google I think it's at http://google.com and once you're there you select words you want to search for in general posts, type it and click 'search' or 'find', and it will tell you 'I have 5000 posts about Nocturnalseizures, would you like to refine the search? or it sorts them from most likely (it thinks) to least likely to be of use-- I found usually by number 10 or 12 the best ones are done. You can use & symbol to combine things so children&nocturnalseizures and reduce the number it will sort for you. You could also use that name above (frontallobeseizures) <-- I haven't heard of that before. I *think google doesn't want spaces between words in the search line, but someone else might know, or have some links. .G./ >>> My Daughter Victoria is now 5 but 3 when she had her fist seizure. This >>> is my concern: [quoted text clipped - 6 lines] > (Tegretol). Note *I am not a Doctor, but your Pharmacist might be able > to give you a printout or a website to look up when those are used. You're absolutely right about that. Here's what an official website has to say about the similarity: "Oxcarbazepine is structurally a derivative of carbamazepine, adding an extra oxygen atom on the dibenzazepine ring. This difference helps reduce the impact on the liver of metabolizing the drug, and also prevents the serious forms of anemia occasionally associated with carbamazepine. Aside from this reduction in side effects, it is thought to have the same mechanism as carbamazepine" http://en.wikipedia.org/wiki/Oxcarbazepine As far as the "lab-rat" part is concerned, we all go through that to some extent in the search for a drug or combination of drugs that will control one's seizures. I started on Neurontin and it didn't give control, so Tegretol was added and it did nothing whatsoever. I was then tried on Lamictal, Keppra, and probably some others I've forgotten without gaining any more control than a piece of peppermint candy would have given. Phenobarbital (lots of adult users!) gave the first promise of some relief, but it was less than ideal for me. Dilantin was then started and I've been on it for 2 years now. It's the only one that has worked to date and I've run out of options and am very happy it has worked.
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