Newbie to everything

[maddysdad]

Hi Everyone

Last Wed night my 8 year old daughter had a complex partial seizure. We've have been to a couple appts with the doctors and they have put her on Trielptal.

We just got back from an MRI and her EEG is on Tues. The doctors have been great and I cant belive how quick the tests are being done.

What should I be looking for next.

Are we on the right track so far?

Thanks for any info

 

[donnajane]

Welcome. I am mum to a 2yr old who has a few different forms of seziures. He is currently on Tegretol morning and Clobazam and Tegtretol in the evening. Right track well yes the Dr's are looking into it. What to look for next? Well I suppose it depends on what the EEG and the MRI show and how she responds to meds.
My little man had 5 EEG's with only a tiny movement on the first 4 with his eyes rolling up with the flashing lights, then on the 5th they found a slowing on the back right of his brain, plus he did the eye thing again. His Nureo decided to do and MRI at 18month just "in case" and found a brain lesion on his putamen, right inside his brain, which may or may not be the cause of his events etc. (It didn't show on his EEG's due to its location in the brain.)
We have been on this journey since his first trip to the ED just after 7 months old although looking back he probably was having seziures before then and we kept getting told it was reflux and/or i was just tired?
My advice would be to keep a journal, write in it seizures or anything else which seems different but also write in it good days. Video, if you can, any events so Dr's can see them. I realise sometimes this is hard to do. Give the meds time to work but if you are concerned seek help, ask lots of questions. I have learn't so much from everyone on here. My theory is I would rather be seen as an over reactive parent than go what if.................... later on.
Another thing I have learn't which took my awhile is that Dr's sometimes don't have all the answers. My sons case has got them wondering and a common line in the reports from his Dr's is they are worried they are missing something very important, so even they acknowledge that in his case they don't have all the answers.
Hope you get some answers soon and the meds stop any future seizures.
Donna

 

[Lsufan5515]

I'm pretty new here as we'll, but we have been dealing with epilepsy fi a year and a half now. My son (5 yrs) has mostly partial complex and absence seizures. He is also on Trileptal. Donna made a very Important point that I also learned after a few apps - the doctors also sometimes have questions and are making their best educated guesses. We don't know for sure why my sin has epilepsy, although we guess it is from the meningitis he had as an infant. His EEG and MRI all came back fine, except for the spots from his strokes that we already knew about. He continues to have break through seizures and we deal with them as they happen. Patient but persistent is the key. Patience that meds might have to be adjusted and seizures may happen, but persistent to get your concerns answered to the best of their ability and provide your daughter with as normal a life as possible.

It sounds like everything is going well for you so far, and I'm glad she got the tests done quickly. Just try not to get discouraged if she has breakthrough seizures or if a medication switch is necessary. It happens sometimes and can be extremely frustrating, but it's a possibility.

Good luck!

 

[LisaBee]

Sounds like you are on the right track, keep pushing for answers and help. My daughter also takes Trileptal and is doing well. I know how scary this is, hang in there.

 

[maddysdad]

Hi everyone

So she was just diagnoised with Benign Rolandic Epilepsy and the dotors have put her on oxcarbazepine.

The last 3 weeks have been crazy with all the testing and sleepless nights.

Now that we know what is going on with her, is there anything else that we should be asking the doctors or doing on our own?

Thanks for any info