I have no patience

[lco120]

Hi everyone, my 31 month old with myoclonic seizures is on 2.5 ml Keppra (liquid) twice a day.

I saw an improvement for 2 days when we increased to this level and now I am back to seeing the same amount of episodes each day (3-5) split second eye roll/flutter.

It's only been 9 days on this dose. Am I being unlreasitc or do I call the doc now to increase?

 

[Nakamova]

It doesn't hurt to call the doc now. The doc may tell you to be patient a few more days, but at least they'll know right away that the current dose isn't doing the trick.

 

[donnajane]

Keep charting what you are seeing so that when you call Dr you will be able to give him all the info. I keep a daily journal for my little man so it's all there is needed. His Nureo only see's him every few months for around 20minutes and that is not enough time to see what is really going on. We live with our kids 24/7 so the journal you keep is so important to help Dr's work out correct dose etc.
Hope thing improve.
Donna

 

[KarenB]

Another thing I do (in addition to copious charting of meds, supplements, seizure activity and what type, changes to diet, episodes of diarrhea or vomiting ,etc. etc) is to maintan a bar (or sometimes a line graph) graph of Jonathan's seizure activity for the month -- one bar for the seizures and one for the meds (that way you can compare the changes in meds to effect on seizures).

I take this one page graph to show the doctor. Jon's neurologist likes this a lot (he always scans it in) because he can see in an instant whether the seizures are increasing or decreasing, and what effect, if any, the meds are having.

His neurologist is also interested in the time of day that Jon has seizures, so I also keep a little table divided into 3 hour segments (it has the dates going across horizontally for the month, and vertically for the time of day), and any seizure activity is noted with an "S" highlighted in yellow.

I think if you're having a lot of issues in between doctor visits, you could email or fax in the chart (in my experience, docs like to look at things rather than listen -- probably because they can read super fast, and don't have the patience to listen to me take 5 minutes to tell them something they can see in 30 seconds by reading or looking at a chart or graph)