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LGS/rufinamide update/info for TDMSBR & anyone else

(3 Posts)
feelingbetter Sat 05-Sep-09 18:20:53

Week 6 and now on 300mg per day, 150 am, 150pm.

There has been no change in DSs physical jerky movements or clusters of jerks.

He did oblige and have a cluster during the EEG and thankfully it showed no associated hyppsarhythmia (or any hypps at all) pattern smile, but it is epileptic activity which they have described as myoclonic. Same as they described it during his 1st EEG at 3 months old, so no suprises there.
So his physical symptoms are no guide as to how the drug is working. Which is OK, but I was hopeful it would stop the jerks. It also means we are almost blind as to whether the drug is working at all.

DS has taken a massive leap forward recently, can roll and roll and physio is very pleased with his sitting posture and his head and trunk control taken a massive leap too. He is babbling with more 'word' like noises and is taking turns.

He is much more alert and aware and neuro feels that this is a good sign that the rufinamide is starting to have an effect. He is still on a very low dose due to his age. Most kiddies start at about 400mg doses.
We aim to get to 400mg 2 x daily and stay there for 6 months if there are no ill effects. It doesn't seem to be affecting his reflux and neuro wasn't sure whether it would.
This is our guide as to the effects of the drug.

So its all going well, at the mo. The only PITA is giving it to him in bigger doses as it only comes in tablet form. We crush it and smuggle it in with his food which he is starting to get wise to and tries to spit it out grin. Thats only a tab and a half at a time, how he'll be with four at a time I can't think!

TheDMshouldbeRivened Sat 05-Sep-09 18:53:34

has it improved the EEG at all? I want that LGS pattern gone!
dd will be starting in a few weeks I think.

feelingbetter Sat 05-Sep-09 22:01:35

Don't know, we are not EEGing again till he reaches the 400mg 2 x daily and stays there for a bit.
Your DD (tho I hope she doesn't have to) will probably start at that dose, but neuro is being uber careful due to DS being so young and it hasn't been tried and tested on his age group.
We are trying to be patient.

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