Epilim side effects

Stephanie - posted on 04/05/2009 ( 21 moms have responded )

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Hi, i have a son who's nearly 5, who's has other illnesses other then Epilepsy, he was doing great in his developments i was told he may never walk and he may never be able to do thing for himself, but he's walking, talking, very independent, thanks to all the help from speech therapy, physio, occupational therapy an so on.. He's doesnt suffer much from seizures he went nearly 2 years seizure free and then started having them again he was on Phenobarbitone but his neuro decided to take him off it and put him on Epilim, he's been on it a year now, and my god has things changed in every way, it wasnt that bad a first but as the months have gone on things have got really really bad, from very bad mood swings, hitting other kids in school which is really not like him, anyone that knows him knows thats its not in his character to be like this and im very stressed and upset over this, then theres the tiredness he goes to pre-school for 2 and a half hours aday but since September last he started falling asleep there wanting more food, i was very worried as so the teachers at school that i ended up taking him to my family doctor and asked to have tests ran, the blood tests came back that he has an underactive thyroid, which wasnt that low to put him on medication, but i was happy to have a answer to it all, but things then got worse even more and i was due to see his neuro so i waited and when we were in with her i asked for her to put him on medication cause it was really effecting everything he done, he was missing so much school cause he was always tired, all of his therapies an so i and i was feed up with it so she retested him and it came back that he hasnt got an underactive thyroid so i ended up back at square one again, then the sickness started if he didnt get sick he was complianing that he wanted to be sick.

Now since January he hasnt done one full week in school due to tiredness and sickness when he does go in im getting a phone call after a hour of him being there saying he's after been sick and he's asleep now, its effecting everything we do i cant do anything when he does go to school cause i dont know when im going to get a phone call! He's also so unsteady on his legs he keeps falling over and bruises all over his body over it so i was fed up 4 weeks ago and caught him on camera of the way he's been for months, and took him the hospital i demanded that i wasnt going anywhere till i got answers cause we cant keep living like it, so they kept him in for a week to run tests, blood tests, an MRI scan was done and an EEG scan, but surprise surprise nothing showed up, and the little begger didnt do anything taht he's been doing in school and at home so they sent him home, i was like a bull leaving but what could i do they done everything that they could do. The only other thing now is he's medication ive thought of everything and this is the only thing that keeps coming up now, so i got on the phone to his neuro who saying that it cant be he's medication cause it hasnt been increased in a while but im trying to explain these things have been happening since the first couple of months of starting on it but have just got worse i cant complain cause the medication is keeping the seizures at bay he hasnt had one since July last but if these are epilim side effects it can't be right. Im just wondering if there is anyone else that have or is going through this, and just wondering what i can do and what you done, or anyone that has any advise for me to what i can do. All advise is very welcome ill take any advise at this stage. Sorry for the long message but i get very frustrated about it all..

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Susan - posted on 04/21/2009

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Hi our Daughter has been having seizures since she was 2 and a half she is now nearly 11. Originally she was on Epilim but that made her agressive and moody she lost her apetite and even went for our GP, who advised us to seek a second opinion and we changed our consultant as the original one totally ignored us saying it couldn't possibly be Epilim side effects. When we changed consultants they changed her meds and put her on Clonazepam aqnd tegretol retard this worked well for a few years but we are now on lamotrigne and clonazepam, with us still increasing every 4 weeks to try and get her under control again.



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Stephanie - posted on 04/28/2009

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Hey all thank you all so much for your advice, it was getting very frustrating, but thank god they decided to do something by to take him down a dosage on the Trileptal and ive seen an improvement, the sickness an nausea is gone, hes not sleeping as much as he was, but we still have the mood swings, but i can deal with that at the mo.. I heard about the fish oils someone said that to me, im going to give it a go, and see how we get on.. Thank you all again youse all have been very helpfull and its nice to know theres people out there that know what your going through and that im able to talk to someone about it!!!!! x

[deleted account]

My son was diagnosed with epilepsy at 9 months and was put on tegretol, at first it made him tired then as he got older his behavior became worse....all the above you are describing mood swings, hitting, violent outbursts, indecisiveness it was crazy when I took him to a pediatric neurologist in Melbourne Australia about the issues he told me that they would not change his meds to epilim as his behavior issues would be worse. I have read up on all the info about these medications there is not medical documentation of behavior issues however get on alot of forums and blogs and the evidence is there... I have had successes with using natural medicine in combination with the tegretol I use magnesium as it calms the nerve endings and a fish oil called eflex which they are using on kids with all sorts of brain issues from epilepsy, autism, etc check with your doctor but I was at my wits end I had meetings at daycare I gave it a go it took a few weeks and has not been a complete cure but there has been an 100% improvement to where we where 3 months ago

Lacey - posted on 04/27/2009

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Hi my son has developmental disabilities adn some behavioral problems and was recently hospitalized for seizures. The one thing I remmeber the neurologist telling me was that some medications can cause behavioral problems and that is why she put my son on Tegretol because it does not have behavioral problems as side effects. Tegretol has been a great med for him, it has controlled the seizures and also helped with some of his behavior.

Vanessa - posted on 04/27/2009

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Hi, my six year old daughter was put on Epilim for nearly three months (back in November), while trying to get her seizures under control. Epilim side effects caused constant mood swings and she lashed out at either me or my husband, fists and all, we've never seen her like this before. The hospital pediatrican changed her medications and she is now on Tegretol three times a day, and the seizure activity has decreased dramatically, along with the mood swings. We have never looked back!!! Hope you find a solution quickly... it's not easy watching your own child out of control...

Felicity - posted on 04/24/2009

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hi i have a 7 year old daughter who is on epilim medication when she first started taking it it made her feel sick doctors started her on a small dose n kept upping the dose i found it made her sleepy n she were eating alot more than usuall wen she was lil amout a year old she were allways off her legs n falling over n couldnt stand or walk propally was always at the hospital demanding answers but never got any untill she were 2 years of age and found after so many EEG scans n MRI scans they found some brain activitie tht she were aving seizures she has been on epilim for 3 yrs now she has less siezures now but found the seizures are more savere n longer the first few EEG scans didnt show anything untill she had more scans before she was put on epilim she were on a different medication which didnt suit her at all so they changed it too epilim i would keep going to the doctors n consultants untill they listen to your concerns i may feel as though you are wasting your time but u worried for your son n they will have to listen and see tht it making your son n your life stressfull dnt give up you need answers from them you just need keep pestering them it may be tht it doesnt suit him the medication even though it keeps the seizures under controll there r other medications they could consider

Melissa - posted on 04/21/2009

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HI i am 30 and got diagnosed with epilepsy at the age of 24 after the a car accidents, which would have been avoided if doctors listerned to me. I knew something was wrong but the too said after doing mri's and blood test that i was fine. Everything was fine until the last 18months, i am now on my 5th lot of medication including epilim and they can't seem to tell me why or what the problems is. At first the said the medication stopped working, then they did more test and scans and now telling me my eeg and the type of seizures i have don't match maybe i have two types front temple and right temple lobe. Everytime you see them it's up the medication and see you next time, hopefully things will be better and i understand your at your end with it all. One doctor did tell me about a food additive called 951 (aspartame) it's in diet drinks and most sugar free products, to my surprise people with epilepsy shouldn't have it as is plays with their brain waves and upsets everything. Once stop taking, it takes 70 days to come out of your body.

Just another possiblity. Hope it helps. And hang in there hopefully they will work something out, but if you think something wrong stand your ground to the doctors i think know one knows yourself or your kids better then you.

mel

Alexandra - posted on 04/21/2009

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Hey I have a 7 and half yr old girl who has had epilepsy since just after she turned 4yrs old.She also has rubinstein-taybi sydrome...We have been on Epilim now for nearly 4 yrs and we have the horrible tantrums,mood swings,anger,behaviour problems,bowel problems,frustration and so on.most of this im unsure if it is coz her being on epilim or if it is because she has a disablility as none of this was happening before she started

on epilim or before the major seizures.The huge seizures where she would foam at the mouth,go blue and stop breathing,go fully stiff in her body,eyes roll in the back of her head,and she would pee/poo herself and then come out disorientated have stopped and now she has minor ones where she just shakes and absent seizures and has recollection after them what happened before.She alos wakes during the night heaps and has really bad behavioural problems.I have been back to the pediatrician and they have just upped her dose another 4mls a day.She has bowel problems where she is constipated.....Im as lost as ur r but have found it has stopped the bad seizures and only have minor ones now......

Alex

Adriana - posted on 04/19/2009

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Hi my son is 4 years old and has been on Epilim for the past 10 months after a 3 hours seizures episode. We was not epileptic before, just had febrile convulsions but due to that last one the latest EEG showed some epileptic waves so he is still on Epilim.



His behaviour has changed dramaticly since and we are still trying to find out if it is a side effect of the Epilim or a change of personality after the episode. He more active than ever and has trouble in school. The teacher says he is not keeping up with his peers as he does not process all the information he is given. I dont really notice this and the Neurologist says she sees nothing wrong with him but the school thinks I should put him in a remedial school.

Theresa - posted on 04/16/2009

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hi my dautgher  been put on epeim   to take 5mg moring and nite but did not work she kept falling over and falling a slept and wet her self  so took back to doc they cut it down seem to be lot better      theresa

Sue - posted on 04/15/2009

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Hi Stephanie, i dont blame you for being frustrated, I hate doctors, they never seem to get it right and you have to do all the doctoring urself. My son is 27yrs old now but had a fall (very bad ) at age14months and then his behaviour went AWOL, then at 2ys old and after his sister was born, his dad and i split up. Doctors put my sons behaviour down to his father leaving.For 12 yrs I continually took my son to the paediatric dept and told them THERE IS SOMETHING NOT RIGHT but the doctors told me he was fine and then finally at age 12 a doctor from the united states finally looked a little deeper and diagnosed brain damage due to his fall when he was a toddler, he got no help at school because of the doctors misdiagnosing him and i I had to get permission from the govt to remove him at age 14yrs as he was always being bullied and beaten up, then he developed epilepsy, which the docs believe goes hand in hand with a brain injury, he also had a severe bout of meningitis when he was 11yrs old which destroyed a few more of his brain cells and was treated as an ear infection first. So my sympathies are with you. My son is an angel but he has had such a crap life BUT to be positive I have to believe he is such an angel because of all the crap, now he has cancer which has successfully been removed, so so far so good, so you hang on in there and keep chippin away at those doctors Ok. My thoughts are with ya .
Sue

[deleted account]

my 7 yr old son has been on epilim 4 a number of years and he hasn't  really had a prob wiv it. his had no seizures for almost 2 yrs, so it can work i tnk it just depends on the child.



i wish u all the best finding the right med's for your son

Stephanie - posted on 04/08/2009

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Thanks Jenny, ill keep it in mind, the docs were actually on the phone to me today their going to try taken im off the Trileptal first before they touch the Epilim cause its doing so well at keeping the seizures away.. So fingers crossed it helps, ill try anything at this stage thanks for the advice!!!

Jenny - posted on 04/08/2009

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My son is on Epilim - found what worked best for him was when they changed it 3 times per day given 8 hourly apart (give 6am; 2PM and 10PM) so can give lower amt per dose.  Remember when trying to get levels right in the beginning it was trial and error - seems medicene not exacting sciene.  Hope & pray you get a solution.

Stephanie - posted on 04/07/2009

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Thanks Julie, im trying ive just got off the phone to the neuro nurse im now waiting on a call back to see what his neuro wants to do but i told them i would prefer him to be taken off it, so fingers crossed they do decide to take him off it, thanks for the advice all!!!

Julie - posted on 04/06/2009

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Epilim side effects

"Hi, i have a son who's nearly 5, who's has other illnesses other then Epilepsy, he was doing great in his developments i was told he may never walk and he may never be able to do thing for himself, but he's walking, talking, very independent, thanks to all the help from speech therapy, physio, occupational therapy an so on.. He's doesnt suffer much from seizures he went nearly 2 years seizure free and then started having them again he was on Phenobarbitone but his neuro decided to take him off it and put him on Epilim, he's been on it a year now, and my god has things changed in every way, it wasnt that bad a first but as the months have gone on things have got really really bad, from very bad mood swings, hitting other kids in school which is really not like him, anyone that knows him knows thats its not in his character to be like this and im very stressed and upset over this, then theres the tiredness he goes to pre-school for 2 and a half hours aday but since September last he started falling asleep there wanting more food, i was very worried as so the teachers at school that i ended up taking him to my family doctor and asked to have tests ran, the blood tests came back that he has an underactive thyroid, which wasnt that low to put him on medication, but i was happy to have a answer to it all, but things then got worse even more and i was due to see his neuro so i waited and when we were in with her i asked for her to put him on medication cause it was really effecting everything he done, he was missing so much school cause he was always tired, all of his therapies an so i and i was feed up with it so she retested him and it came back that he hasnt got an underactive thyroid so i ended up back at square one again, then the sickness started if he didnt get sick he was complianing that he wanted to be sick.

Now since January he hasnt done one full week in school due to tiredness and sickness when he does go in im getting a phone call after a hour of him being there saying he's after been sick and he's asleep now, its effecting everything we do i cant do anything when he does go to school cause i dont know when im going to get a phone call! He's also so unsteady on his legs he keeps falling over and bruises all over his body over it so i was fed up 4 weeks ago and caught him on camera of the way he's been for months, and took him the hospital i demanded that i wasnt going anywhere till i got answers cause we cant keep living like it, so they kept him in for a week to run tests, blood tests, an MRI scan was done and an EEG scan, but surprise surprise nothing showed up, and the little begger didnt do anything taht he's been doing in school and at home so they sent him home, i was like a bull leaving but what could i do they done everything that they could do. The only other thing now is he's medication ive thought of everything and this is the only thing that keeps coming up now, so i got on the phone to his neuro who saying that it cant be he's medication cause it hasnt been increased in a while but im trying to explain these things have been happening since the first couple of months of starting on it but have just got worse i cant complain cause the medication is keeping the seizures at bay he hasnt had one since July last but if these are epilim side effects it can't be right. Im just wondering if there is anyone else that have or is going through this, and just wondering what i can do and what you done, or anyone that has any advise for me to what i can do. All advise is very welcome ill take any advise at this stage. Sorry for the long message but i get very frustrated about it all.."






My daughter also used epilim to control seizure's also had the same effect and the longer she took it the worst she got she even attempted to harm herself my advise to you is ask you'r neuro to put him on tegretol cr you will see a change within a week or two

Stephanie - posted on 04/06/2009

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Thanks Jenny, Ive asked the pharmacist and they said no its not that and the fact the neuro increased the Trileptal from 4mls to 5 mls twice a day, i dont think they would of done that, and he got his levels done about 4 weeks ago when in hospital, i think the doctor said they were either 52 or 57 and said thats normal? thats why im asking if anyone else been through it or know what i can do, cause ive thought of everything i can and it just keeps coming back to the Epilim...



Ive tried last week by giving him his medication after he finishes school at 12, i done it Wednesday Thursday and Friday and he had brilliant days in school, the best he's been in a year. But its a pain cause i have to wake him up at 12 at night to give it to him, i had a great routine of giving it to him at half 7 every night and half 7 in the morning so he's getting it just befoore he goes to bed and when he wakes up in the morning, so waking him up he's getting very cranky. The sleeping business isnt right either he goes to bed and sleeps 12 hours straight and then sleeping another between 1 to 3 hours a day, i know medication can make you tired but i think thats a bit to much though... But thanks for the advice all is welcome and taken on board...

Jenny - posted on 04/06/2009

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The another to possibly ask the doctors or pharmacist whether any of his other meds are interacting with Epilim & what side effects it could be causing.  Another I could think of was to have the Epilim levels in blood tested to see levels of Soduim Volporate as there is recommended range of I think 50 - 100.  Hope you get some answers!

Stephanie - posted on 04/06/2009

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Thanks Haley, Im trying at the moment to get it changed, they wanted to try increasing the Trileptal first (Thats the other med he's on) That was 3 weeks ago and it hasnt changed anything, i was ment to get back in touch with the neuro nurses but they were closed since thursday so am going to try today.

Haley - posted on 04/05/2009

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I am at the very beginning stages of medication for my 7 year old that has just been diognosed with epilepsy. The only thing I can say is that when we were meeting with our Pediatrician she made it very clear that if any medication changes our boy to the worst (mood changes, sickness etc) then they would change medication to find one that is a better balance for keeping the seizures at bay and keeping the side effects to a minimum. If I was you I would demand a change of medication, there will be one that is better all round for your boy. My son is on Tegretol.  Hope this helps.

Vanessa - posted on 04/27/2009

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Hi, my six year old daughter was put on Epilim for nearly three months (back in November), while trying to get her seizures under control. Epilim side effects caused constant mood swings and she lashed out at either me or my husband, fists and all, we've never seen her like this before. The hospital pediatrican changed her medications and she is now on Tegretol three times a day, and the seizure activity has decreased dramatically, along with the mood swings. We have never looked back!!! Hope you find a solution quickly... it's not easy watching your own child out of control...

Julie - posted on 04/06/2009

1

6

0

Epilim side effects

"Hi, i have a son who's nearly 5, who's has other illnesses other then Epilepsy, he was doing great in his developments i was told he may never walk and he may never be able to do thing for himself, but he's walking, talking, very independent, thanks to all the help from speech therapy, physio, occupational therapy an so on.. He's doesnt suffer much from seizures he went nearly 2 years seizure free and then started having them again he was on Phenobarbitone but his neuro decided to take him off it and put him on Epilim, he's been on it a year now, and my god has things changed in every way, it wasnt that bad a first but as the months have gone on things have got really really bad, from very bad mood swings, hitting other kids in school which is really not like him, anyone that knows him knows thats its not in his character to be like this and im very stressed and upset over this, then theres the tiredness he goes to pre-school for 2 and a half hours aday but since September last he started falling asleep there wanting more food, i was very worried as so the teachers at school that i ended up taking him to my family doctor and asked to have tests ran, the blood tests came back that he has an underactive thyroid, which wasnt that low to put him on medication, but i was happy to have a answer to it all, but things then got worse even more and i was due to see his neuro so i waited and when we were in with her i asked for her to put him on medication cause it was really effecting everything he done, he was missing so much school cause he was always tired, all of his therapies an so i and i was feed up with it so she retested him and it came back that he hasnt got an underactive thyroid so i ended up back at square one again, then the sickness started if he didnt get sick he was complianing that he wanted to be sick.

Now since January he hasnt done one full week in school due to tiredness and sickness when he does go in im getting a phone call after a hour of him being there saying he's after been sick and he's asleep now, its effecting everything we do i cant do anything when he does go to school cause i dont know when im going to get a phone call! He's also so unsteady on his legs he keeps falling over and bruises all over his body over it so i was fed up 4 weeks ago and caught him on camera of the way he's been for months, and took him the hospital i demanded that i wasnt going anywhere till i got answers cause we cant keep living like it, so they kept him in for a week to run tests, blood tests, an MRI scan was done and an EEG scan, but surprise surprise nothing showed up, and the little begger didnt do anything taht he's been doing in school and at home so they sent him home, i was like a bull leaving but what could i do they done everything that they could do. The only other thing now is he's medication ive thought of everything and this is the only thing that keeps coming up now, so i got on the phone to his neuro who saying that it cant be he's medication cause it hasnt been increased in a while but im trying to explain these things have been happening since the first couple of months of starting on it but have just got worse i cant complain cause the medication is keeping the seizures at bay he hasnt had one since July last but if these are epilim side effects it can't be right. Im just wondering if there is anyone else that have or is going through this, and just wondering what i can do and what you done, or anyone that has any advise for me to what i can do. All advise is very welcome ill take any advise at this stage. Sorry for the long message but i get very frustrated about it all.."






My daughter also used epilim to control seizure's also had the same effect and the longer she took it the worst she got she even attempted to harm herself my advise to you is ask you'r neuro to put him on tegretol cr you will see a change within a week or two

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