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Medical Forum / Diseases and Disorders / Epilepsy / August 2004Daughter's Meds
My nearly 2yr old has been having seizures for a little over a year now. Everything except tonic, started with drop seizures and a few tonic-clonic's and now mostly absence followed immediately by myoclonic. My question is can anyone share their experiences of the effects of meds? Its hard for a toddler to tell us, especially when she doesn't speak and obviously doesn't know what normal is. She is on, clonazepam, valproic, lamictal and keppra. We have noticed that her ability to walk is significantly impaired after taking the meds (she started at 10 months but now walks like a 12 month old and falls alot). She is very hyper and can't sit still. Most of the meds I have listed have hyperactivity (especially clonazepam) and ataxia (gait impairment) as side effects. Can anyone offer me some insight? thx Carl ;-) > My nearly 2yr old has been having seizures for a little over a year now. > Everything except tonic, started with drop seizures and a few tonic-clonic's [quoted text clipped - 6 lines] > her ability to walk is significantly impaired after taking the meds (she > started at 10 months but now walks like a 12 month old and falls alot). Do you mean this all started when she first started taking the meds, or do you mean every day after taking her meds she has problems with walking? Was she a premature baby and if so, how early? How is her speech development? Barb > She > is very hyper and can't sit still. Most of the meds I have listed have [quoted text clipped - 6 lines] > > Carl ;-) The meds have been changed over the course of the year, as follows (no timeline) - phenobarb - phenobarb, topirimate - phenobarb, topirimate, clobazam - topirimate, valproic - valproic, clonazepam - vaproic, clonazepam, lamictal - valproic, clonazepam, lamictal, keppra She was walking early (10 mos) but since going on keppra her stability is not very good She has a small vocabulary but is cognitively hitting milestones She was not premature but over term by 10 days and in NICU (neonatal ICU) for 5 days, a bad delivery that should have been a c-section, she was recusitated but not intubated. Carl ;-) > > My nearly 2yr old has been having seizures for a little over a year now. > > Everything except tonic, started with drop seizures and a few tonic-clonic's [quoted text clipped - 23 lines] > > > > Carl ;-) > The meds have been changed over the course of the year, as follows (no > timeline) [quoted text clipped - 17 lines] > > Carl ;-) Sorry to hear about this Carl. My son's epilepsy rose up and first said 'Hello' shortly before his 5th birthday. There's a ton of different forms of Epilepsy so each person's going to react differently. With my son, Depakote (Valproic) and Keppra were a toxic combination. After about four months we dumped his Neurologist in favor of one that was actually fully credentialed and Board Certified in Pediatric Neurology. The first one, ironically, was HIGHLY recommended by local doctors....shows what they know....With the Dep and Keppra he was very lethargic and gained weight. Hie seizure frequency increased and we saw all manner of seizures....Atonic, Absence and Tonic.....it was REALLY trying. Anyway, we started onto a course treatment with Topomax with the new doctor and eliminated Keppra and Depakote. We gained some control but were still seeing a Tonic every six months. Absence seizure activity continued to show on EEG tests. We added Lamictal and eventaully found a level where his EEG is perfectly normal. It's been 16 months since his last Tonic and we're on a path now to eliminate Topomax. Unfortunately, trial and error guided by a competant Neuro is the best you can hope for. Honestly, all of those meds sounds like carpet bombing to me....Have you sought a second opinion or researched the actual credentials of who's treating your daughter? I give absolutely zero credibility to just having the sheepskin on the wall....anyone treating my son better damn well have gone the extra mile in proving their worthiness to work in Ped Neurology and to work on my son. God Bless you and your daughter man! -Jedi and Son Hi Jedi & Son; Thanks for the information. FYI one of the side effects of Depakote is weight gain, typically 10-20%. Also, Topomax is undergoing clinical trials right now as a weight loss drug. So if your son starts to lose weight.... Our duaghter was on Topomax and it had virtually no effect except cause her to lose a few pounds, which for a 10 month old is not good. We were referred to one of the top Pediatric Neurologists (specializing in epilepsy) in Canada and we were offered no insight. WRT drugs the reaction was that if it works don't touch it. The problem is that each drug works a bit. This is of course challenged by the fact that her brain is still very actively developing and the seizure activity has been evolving with her brain development. Our neurologist is very good and our daughter has been presented during groups, case discussions, including radiology and other medical disciplines. So our neurologist is not acting alone and is looking out for the welfare of our daughter and us. He realizes the 4 med combination is not good but at this tender age, seizure control is critical. The plan is to get the Keppra to the right dose and then remove Clonazepam and Lamictal. We are also starting the path to the Ketogenic diet. Our daughter's full case is currently being reviewed by another top Pediatric Neurologist in Canada and we will be discussing the case with this doctor in about 1 month. I have been reviewing hundreds of articles in the medical literature and a medical textbook (Comprehensive Treatise of Epilepsy) to try and understand this whole condition. It seems like nobody really understands and every case is different very much individual. Carl > > The meds have been changed over the course of the year, as follows (no > > timeline) [quoted text clipped - 45 lines] > > -Jedi and Son > I have been reviewing hundreds of articles in the medical literature and a > medical textbook (Comprehensive Treatise of Epilepsy) to try and understand > this whole condition. It seems like nobody really understands and every > case is different very much individual. Yes, that is the way to go to familiarize yourself with this topic. Read all those articles, go to the library to get a couple of good books or buy one at a book trade. Some suggestions: 1. Practial Guide To Epilepsy / Mark Manford MD, FRCP / isbn 0-7506-4621-7 2. Epilepsy Patient & Family Guide 2nd Edition / Orrin Devinsky, MD / isbn 0-8036-0498-x 3. Partial Seizure Disorders / Help for Patients and Families / Mitzi Waltz / isbn 0-596-50003-3 The first one is very difficult to read as they were written for neurologists -the other ones are very easy to read and very helpfull. Not only the epilepsy it self, but also the several medication, side effects, social aspects and some chapters about epilepsy in childhood and adolescents. I bought some other books as well but they are no good so I won't recommend them to anyone.  SignatureTake care. Bye, Marco > The first one is very difficult to read as they were written for > neurologists -the other ones are very easy to read and very helpfull. [quoted text clipped - 4 lines] > I bought some other books as well but they are no good so I won't > recommend them to anyone. I read with interest everyones experiences with different meds. Right now I take 1500 of Keppra that is supposed to control the partials. But it is only half successful as best... and damn expensive. It sounds like the only way to know for sure it to try and see if it works or not, as there is no miracle pill that works on everyone. >> The first one is very difficult to read as they were written for >> neurologists -the other ones are very easy to read and very helpfull. [quoted text clipped - 10 lines] > way to know for sure it to try and see if it works or not, as there is no > miracle pill that works on everyone. Ignore the duplicate posting that will show up in a minute or two... I take 1000 mg of Depakene and before I got on to that, I lost 15 KG in 9 weeks (yes, I did!) and I had been steady at that level for months...now I am slightly increasing in weight again and I certainly have difficulties to loose the extras :-( That certainly sucks man...but hey, that is the only side effect apart from "sometimes feeling dizzy / lightheaded" I am dealing with. So, I won't bug you guys with any complaints as I am so lucky to be seizure free at that dose. SignatureTake care. Bye, Marco > I have been reviewing hundreds of articles in the medical literature and a > medical textbook (Comprehensive Treatise of Epilepsy) to try and understand > this whole condition. It seems like nobody really understands and every > case is different very much individual. Yes, that is the way to go to familiarize yourself with this topic. Read all those articles, go to the library to get a couple of good books or buy one at a book trade. Some suggestions: 1. Practial Guide To Epilepsy / Mark Manford MD, FRCP / isbn 0-7506-4621-7 2. Epilepsy Patient & Family Guide 2nd Edition / Orrin Devinsky, MD / isbn 0-8036-0498-x 3. Partial Seizure Disorders / Help for Patients and Families / Mitzi Waltz / isbn 0-596-50003-3 The first one is very difficult to read as they were written for neurologists -the other ones are very easy to read and very helpfull. Not only the epilepsy it self, but also the several medication, side effects, social aspects and some chapters about epilepsy in childhood and adolescents. I bought some other books as well but they are no good so I won't recommend them to anyone. SignatureTake care. Bye, Marco Hi Carl I wish you so much luck with your daughter. I suffer with many siezure types and have spent the past number of years on various differnt drugs - now I know then are many many years between your daughter and I - but we seem you be both suffering in the same way. I have now, Complex Partials with secondary Tonic Clonics along with Absence, Myoclonics and I also have sensitivity to light. I really am concenred with the cocktail of drugs your daughter is taking - I was down to taking Lamictal & Topomax before changing to Keppra with a small dose of Topomax. Reading what you've described about your daughter - to me she seems over medicated - I aonly say this because I have been on certain drugs that really did not agree with me and boy the side effects were horrific - give you an example - here in OZ its called CIPRIMAL man oh man I couldn't keep my head steady, pictures on the tv screen ended up one inch square in the bottom left hand corner and thats just for starters. So please be very careful about her meds. Remember, these meds go directly into her brain. I wish you the very best of luck - but I strongly suggest you get the doc to pull back a little on the meds. See how you daughter goes with a few less meds - if things don't go so well then fine. But she's taking 4 diff fairly heavy meds here. ((((HUGS))))) Carol >Hi Jedi & Son; > [quoted text clipped - 87 lines] >> >> -Jedi and Son |
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