Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Hi Rob Our daughter has been on Epilim for about 6 years.. We were put into a position by hospital of drugs or lawyers!!- we had had a 4 year battle with them up to this point... it did not happen overnight. For us the drug has not been too bad..we have not noticed any significant reduction in that time of her seizures, however Epilim is one of the older drugs so there is a long history of its side effects. One of the side effects is liver function.. so they should be doing fairly regular blood liver function checks... also her hair became very thin and lifeless... and there was some weight gain. In view of its toxic effects on the liver, we have always ensured she drinks water regularly to keep the liver flushing. We have always played on the fact that Tatijana has multiple chemical allergies and will NOT allow any drug mixes..and also only introduced meds really slowly... and her levels of meds have remained the same since she was 10.. even though she is now 17. The other mainstream one they like to offer is Carbamezipine.. also known as Tegretol.. again a very old drug..again does impact on liver function too.. This is the drug we were initially offered, however Tash started having night terrors and when she got so very frightened she stopped sleeping, we insisted it was stopped,,,I have heard from a number of parents with special kids who have noticed their kids waking screaming from sleep... so I think this is a side effect. We have refused to take the offer of the more modern drugs.. and they are not forcing us to do anything else as the basis of any change from our perspective is a slow and gradual removal of one drug completely.. a gap and then a review.. before agreeing to anything else.... and they are not buying this at all.. I guess with our history and the fact Tash now has a file about 10 cm thick of paper... they are not prepared yet for us to have the drug free option! Because I am so scatty and Tash takes meds like pills easily, we opted for the timerelease formulation... so if I forget... I have a few hours lea way!! We supplement with fish oils at the same time. I have always asked Drs to tell me the longer term things... before making the first decision.. how much meds, how frequently, what checks.. what control of seizures required etc.. what if this does not work what next , what side effects, what symptoms, what treatment if side effects.. etc. So I have a long term picture before committing to what they are saying.- Be prepared for their scare tactics if they sense you may not be fully buying in to the drug support- it is their only means of compliance.. scare tactics and coersion in their heart of hearts their intentions are good.. And at the end of the day you have the right to say no I will wait a little longer. Best wishes Tracey On Sat, Jan 30, 2010 at 9:40 PM, Rob <krcgallen@...> wrote: Hi AllAs Kate noted earlier in the day we are off the the Neuro on Tuesday - we know she is going to try and push us in the direction of Epilim for the seizures....I shudder to ask but what have people's experiences been with this stuff?ThanksRob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 Hi Rob, We did not have a good experience with any of the 3 epilepsy medications my son was put on, of the 3 epilim did seem to control his petit mals and,as the other 2 were so bad, had the least side effects. This was our experience : Epilim - became aggressive Carbamazapine – increased epilepsy from occasional minor petit mals which became up to 20 drop absences an hour Ethosuximide – nausea, vomiting, internal bleeding, massive blood blisters around ankles (I think this was caused by decrease in the normal amounts of blood cells in the blood as this is now listed as a possible side effect) Just be aware of side effects and stop the medication when things don't seem to be right (we were pushed and bullied into staying on medication when things did not seem right). Rob wrote: > > Hi All > > As Kate noted earlier in the day we are off the the Neuro on Tuesday - > we know she is going to try and push us in the direction of Epilim for > the seizures....I shudder to ask but what have people's experiences > been with this stuff? > > Thanks > > Rob > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.432 / Virus Database: 271.1.1/2656 - Release Date: 01/29/10 19:35:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 Hi Thanks for your comments, what we sadly thought already, and will make sure we are not bullied. Is your son med free now? They are pushing us due to ds being 6.5yrs and it being a major teeth and growth time that the seizures are likely to get worse. I would rather do nothing and look forward to seeing linda and discovering tst on friday. Rob On 31 Jan 2010, at 11:11, P & L wrote: > Hi Rob, > We did not have a good experience with any of the 3 epilepsy > medications > my son was put on, of the 3 epilim did seem to control his petit mals > and,as the other 2 were so bad, had the least side effects. > > This was our experience : > Epilim - became aggressive > Carbamazapine – increased epilepsy from occasional minor petit mals > which became up to 20 drop absences an hour > Ethosuximide – nausea, vomiting, internal bleeding, massive blood > blisters around ankles (I think this was caused by decrease in the > normal amounts of blood cells in the blood as this is now listed as a > possible side effect) > > Just be aware of side effects and stop the medication when things > don't > seem to be right (we were pushed and bullied into staying on > medication > when things did not seem right). > > > > Rob wrote: >> >> Hi All >> >> As Kate noted earlier in the day we are off the the Neuro on >> Tuesday - >> we know she is going to try and push us in the direction of Epilim >> for >> the seizures....I shudder to ask but what have people's experiences >> been with this stuff? >> >> Thanks >> >> Rob >> >> >> ------------------------------------------------------------------------ >> >> >> No virus found in this incoming message. >> Checked by AVG - www.avg.com >> Version: 8.5.432 / Virus Database: 271.1.1/2656 - Release Date: >> 01/29/10 19:35:00 >> >> > > > > ------------------------------------ > > DISCLAIMER > No information contained in this post is to be construed as medical > advice. If you need medical advice, please seek it from a suitably > qualified practitioner. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Hi Rob, has been med free since the age of 9 (we were bullied into trying meds when he was 8). We did not like what epilim was doing and decided to take him off , being a bit braver to go against what they were telling us by then!! He has all the usual biomed supplements for epilepsy which gradually got rid of his petit mals. He is now 15 and only very rarely has one, usually when he is poorly or eats something he shouldn't (I have everything crossed and am touching wood as whenever I say something like this everything goes wrong!!!!!!). Good luck for tomorrow. x Rob wrote: > Hi > > Thanks for your comments, what we sadly thought already, and will make > sure we are not bullied. Is your son med free now? They are pushing > us due to ds being 6.5yrs and it being a major teeth and growth time > that the seizures are likely to get worse. I would rather do nothing > and look forward to seeing linda and discovering tst on friday. > > Rob > On 31 Jan 2010, at 11:11, P & L wrote: > > >> Hi Rob, >> We did not have a good experience with any of the 3 epilepsy >> medications >> my son was put on, of the 3 epilim did seem to control his petit mals >> and,as the other 2 were so bad, had the least side effects. >> >> This was our experience : >> Epilim - became aggressive >> Carbamazapine – increased epilepsy from occasional minor petit mals >> which became up to 20 drop absences an hour >> Ethosuximide – nausea, vomiting, internal bleeding, massive blood >> blisters around ankles (I think this was caused by decrease in the >> normal amounts of blood cells in the blood as this is now listed as a >> possible side effect) >> >> Just be aware of side effects and stop the medication when things >> don't >> seem to be right (we were pushed and bullied into staying on >> medication >> when things did not seem right). >> >> >> >> Rob wrote: >> >>> Hi All >>> >>> As Kate noted earlier in the day we are off the the Neuro on >>> Tuesday - >>> we know she is going to try and push us in the direction of Epilim >>> for >>> the seizures....I shudder to ask but what have people's experiences >>> been with this stuff? >>> >>> Thanks >>> >>> Rob >>> >>> >>> ------------------------------------------------------------------------ >>> >>> >>> No virus found in this incoming message. >>> Checked by AVG - www.avg.com >>> Version: 8.5.432 / Virus Database: 271.1.1/2656 - Release Date: >>> 01/29/10 19:35:00 >>> >>> >>> >> >> ------------------------------------ >> >> DISCLAIMER >> No information contained in this post is to be construed as medical >> advice. If you need medical advice, please seek it from a suitably >> qualified practitioner. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Hi Rob, Just seen this but wanted to share our experience. DS (now 15), dx epilepsy when 2.5yrs - at this time was only having what looked like momentary " shiverring " - was prescribed epilim (liquid) which brought on full blown grand mal, tonic seizures. The liquid epilim is bright red and this obviously may have contributed. Next - Lamotrigine (Lamictal), Tegretol, Keppra (levetiracetam), Topiramate - none of them ever helped or reduced seizures for us but instead each one of them made things worse with either behavioural problems e.g. aggressiveness, anxiety attacks, motor coordination problems (to the point that DS could not take more than 3 steps), severe loss of appetite and the list goes on. I have to point out though that our ds has complex problems and a lot of complications so no doubt his epilepsy is one of the harder ones to control. He has had in the past 70-100 seizures on a daily basis. His seizures reduced a lot on the Ketogenic diet (first time round) but then picked up again. We had a second go on the diet and later added P5P (vit b6) and magnesium to this and there was a remarkable reduction in seizures with the P5P. Here's hoping that you find a suitable treatment. emily > > Hi All > > As Kate noted earlier in the day we are off the the Neuro on Tuesday - > we know she is going to try and push us in the direction of Epilim for > the seizures....I shudder to ask but what have people's experiences > been with this stuff? > > Thanks > > Rob > Quote Link to comment Share on other sites More sharing options...
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