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Original poster

epilepsy

5 replies

ferryman · 26/08/2011 18:09

hi all we have a 5yr old dd with epilepsy. we are in ireland and have a locum consultant at present. dd is on epilim but continues to have seizures. this locum told us that epilim causes a reduction of l-carnitine (its an amino acid) in the blood which in turn causes seizures (mad isnt it) i was just wondering if anyone has experience of this? im living in hope that it will help with the seizures

OP posts:
growlybear · 26/08/2011 18:30

Hi ferryman may dd is on epilim amongst others and she continues to be uncontrolled.They are messing around with her meds at the moment.

twlight · 26/08/2011 18:41

its hard - at the beginning to work out which drugs work and which ones dont' - we have been on loads but found epilim and keppra combined works well. If you don't think its working then go back to neuro and ask for a change. good luck x

feelingbetter · 26/08/2011 19:41

We are on three at the mo, Epilim, Keppra and Lamortogine. this has been the best combination (think we have been through them all now) but still control is very poor.

We have just started the ketogenic diet - still early days and struggling to keep DS in ketosis, but we have definitely seen an improvement.

DS has Lennox gastaut syndrome though, so it is very unlikely we will have any kind of real control.

If she is only on Epilim, perhaps they may add in another drug? Epilim is usually doled out as a first line drug, but there are many others (we should know!) - if you feel it is having no effect on the seizures (or even making them worse) go back to the neuro.

Original poster
ferryman · 29/08/2011 21:07

folks thanks for replies. have an appointment with neuro mid oct. dd also has hydrocephalus with vp shunt and cp. always worried when she has a seizure that it may be shunt related. she was on lamotrigine and we had 8 mths seizure free and we were thrilled but then they came back with a vengence. she always needs pr diazepam to stop her seizures. anyway thanks again for replies. it helps to know there are others in the same boat

OP posts:
TheCrunchyside · 30/08/2011 21:46

ods age 5 on epilim for eight months for absences seizures - he is still having loads despite upping dosage. Will also be asking for change of meds for him in Sept

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