Side effects of epilim liquid????

[deleted account] ( 13 moms have responded )

Hi I'm back here again, I've finally got my 20 month old put on epilim liquid after a very long time of nagging doctors etc for him to get what he needs!!!!! But at last things seem to be going our way now I'm just asking is there anyone out there that has or has had a child that has been on epilim liquid and could they please tell me any side effects or dangers this drug may have,all comments and advice very appreciated.

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Melissa - posted on 11/12/2014

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My 12 year old daughter has been on Epilim since she was 3 years of age - born at 31 weeks gestation. She is now weaning off it after normal EEGs for past two years - I am noticing some really cranky angry attitude and don't know if it's teenage girl stuff and/or her body us reacting to less meds ..........?......

Side effects - sleepy most of her childhood - moody after taking them - tired - not much stamina - dry skin - weight stable - likes to graze rather than big meals.

I am feeling helpless as can't describe how's she's feeling x :-(

Wendi - posted on 09/03/2013

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Hi. My 11 year old daughter has been on epilim liquid for a while and the only side affects so far are memory loss. Increased appetite and her temp going up and down.

Charlotte - posted on 06/28/2013

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Hi All, My daughter is 8, she has been diagnosed with benign epilepsy in January this year. she has had about 10 secures from then she only has them in the morning and late at night, she might have 2 a week or it could be 1 a week or she could go 3 weeks with out having none. Today was the second time we see the pediatriction and advised us on to start medication epilim liquid Im very concerned about the side effects on this because her epilepsy does not effect her schooling please would love to her your opinions as im starting this medication on Monday kind regards.

Joanne - posted on 04/29/2013

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hi my daughter was put on epilim liquid at the age of 18 months , she remained on this until she was 11 and half years old after being weaned off , her side affects made her hands shake , she was fine for a few years but started to have fits again last year with a new eeg showing activity in both sides of the brain this time with alot more going on than ever before sadly shes now 14 and is just going back onto epilim the only sad thing is i no she has come so far off the meds at school although she is way behind all her peers for her age , we have weighed up all the pros and cons and its better for her to go back on than be fitting everyday again . i no her hands will start to shake and shell be become more sleepy once again but cant afford for her not to be on it, hope this helps those out there just starting on this route

Kim - posted on 03/20/2013

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my grandaughter has been on liquid epilim since she was 3years 6 months old when she had a grand mal fit and now has drop attack epilepsy. she had 65 fits in one day. she is now 12 years old. slight brain damage due to her fitting when first got it didnt know how to control it. the only side effects vague forgetfull and not eating. they tried to put her on epilium tablets worst thing the doctors ever done. had to be put back on the liquid epilium.she now is in a special education unit for school. before she had epilepsy perfect little girl has gone down hill ever since she got epilesy as doctors do not know how to treat her. it can only get better..... i hope as a grandmother.....thank you......

Alex - posted on 10/28/2011

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MY daughter has been on epilim since july (when she had her first ever fit at age 8) she was fit free for a month but they are slowly increasing. she has had 3 fits in 10 days so I am chasing for the meds or dose to be reviewed.

Alexis - posted on 10/20/2009

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hi my son has been on epilim since he was 11 months old he is now 4... the big side affect for me to watch is the hypo activity.. after discovering his hyponess was related to the high dose of epilim once the medication was lowered and we included lamactal he hasnt had a problem... he still manages to have the occasional seziure every 4 months or so.... but manorism wise he is 200% better....

Kelly - posted on 10/13/2009

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My daughter has been on epilim for 3months & had no side effects thsat we have noticed.

User - posted on 10/06/2009

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our two have had this and the only side effect was stained PJs! we changed onto another brand which was colour free for this reason and because i see no value in giving red colouring to children who have enough problems as it is! our were on it from age 6 to 10 and have been on epilim chrono 300 tablets since. they are ages 11 and 12 now with no effects that i can spot. take care of you, fran

EMMA - posted on 10/02/2009

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Hi my daughter has been on epilim liquid for 4 years and touch wood hasnt had a seizure since! she has blood tests every so often to check her liver function and hasnt had any reaction to the liquid. weight gain and tiredness is a known side effect as far as i know. they do say loss of hair can affect some but nothing with my daughter. they did talk about slowly bringing her off epilim liquid but im not 2 sure at the minute. hope this helps.

Kate - posted on 10/01/2009

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Hiya - my son's been on Epilim for seven years now, that and Sabril sachets are the two meds that sorted out his burst supression seizures as a baby, he's been seizure free ever since :)

So.. side effects from my kiddo's experience were;

-Mild alopetia (sp?) for the first three months of use... there were a few quite obvious bald patches which looked kind of alarming, but grew back thick and fast, he has a beautiful mop of healthy hair now.

-Loss of peripheral vision; Sean can't communicate verbally, but the doctor warned us about this side-effect and the kid does seem to have problems tracking things from a sideways point of view, he turns his head instead. He's due a visit to the opthalmologist soon to get more accuracy on this though, it's hard to tell how severe it is.

-Liver toxins; Doc warned us about a build-up of liver toxins as a result of Epilim use. Sean has regular blood tests and has never had a problem with this.

That's about it from my point of view... end verdict: Totally worth it!!!

Oh... a minor other point... There's a sugar free syrup available instead of the more sugary epilim liquid. Sean's been using the sugar free stuff (even though he's peg fed and doesn't really need to), as first recommended by his dentist when he was able to take the liquid orally. We've since changed to the sugary version, because of the Aspartame (the sugar alternative they add to things like tea sweeteners and diet drinks) played havoc with his digestive system... constipation/cramps/diarrhoea etc. This has settled since changing.

[deleted account]

Quoting Tina:

hi my daughter has been on epilim liquid since 2 months old she is now 4 has not had any side affects herself was ur little one having many seizures



hi tina,yeah he was having uptp 20 a day.can u give me any information or advice would be greatly appreciated,many thanks

Tina - posted on 09/30/2009

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hi my daughter has been on epilim liquid since 2 months old she is now 4 has not had any side affects herself was ur little one having many seizures

EMMA - posted on 10/02/2009

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Hi my daughter has been on epilim liquid for 4 years and touch wood hasnt had a seizure since! she has blood tests every so often to check her liver function and hasnt had any reaction to the liquid. weight gain and tiredness is a known side effect as far as i know. they do say loss of hair can affect some but nothing with my daughter. they did talk about slowly bringing her off epilim liquid but im not 2 sure at the minute. hope this helps.

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