Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Some of you might remember my son Kees who started the diet last year. Kees was diagnosed at 4 months old with infantile spasms. Since then we have tried a lot (depakote, sabril, acth, prednison, lamictal, topamax, felbamate and the ketogenic diet). Some meds gave him a bit relieve and the diet reduced his seizures enourmously but did not make him seizure free. The last few months have been horrible as Kees had between 50-100 drop seizures a day and felled on his head all the time. I was so desperate and down. Kees is now 31 days seizure free...due to sabril (vigabitrine). After consulting with a great neuro in the US we decided to try it again because this neuro explained to us that some children do not respond to vigabitrine unless it is a high dosis (150mg per kg). As soon as we reaced this 150 mg per kg for Kees he was seizure free. I am still affraid that seizures might return and can hardly believe my son does not have head drops anymore. I thank God for this every day. We have to make an EEG within a few weeks and hopefully this will be normal if that is at all possible. I just wanted to share this with you as I know what each one of you is going through as your child has these awful head drops. Some children respond to meds some to the diet and some of them like my son, respond the second time around on the med. Good luck to all of you and hopefully all of our children will be seizure free one day. Mandy (30) mom to Kees (29 months), the Netherlands Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Mandy, It's great to hear of Kees' success with Vigabatrin. This was what worked best for my son too. However make sure they do tests to see that his eyes are not affected. This AED can sometimes cause damage to the retina. Saro.......Rohan's mum Mandy wrote: >Some of you might remember my son Kees who started the diet last year. > >Kees was diagnosed at 4 months old with infantile spasms. Since then we have tried a lot (depakote, sabril, acth, prednison, lamictal, topamax, felbamate and the ketogenic diet). > >Some meds gave him a bit relieve and the diet reduced his seizures enourmously but did not make him seizure free. The last few months have been horrible as Kees had between 50-100 drop seizures a day and felled on his head all the time. I was so desperate and down. > >Kees is now 31 days seizure free...due to sabril (vigabitrine). After consulting with a great neuro in the US we decided to try it again because this neuro explained to us that some children do not respond to vigabitrine unless it is a high dosis (150mg per kg). As soon as we reaced this 150 mg per kg for Kees he was seizure free. I am still affraid that seizures might return and can hardly believe my son does not have head drops anymore. I thank God for this every day. We have to make an EEG within a few weeks and hopefully this will be normal if that is at all possible. > >I just wanted to share this with you as I know what each one of you is going through as your child has these awful head drops. Some children respond to meds some to the diet and some of them like my son, respond the second time around on the med. > >Good luck to all of you and hopefully all of our children will be seizure free one day. > >Mandy (30) mom to Kees (29 months), the Netherlands > > Quote Link to comment Share on other sites More sharing options...
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