Jacinta's EEG results

[jazz'smum]

Jacinta only had 2 absence seizures during the EEG, it was enough for the neurologist to tell us that the activity is adolesent absence seizures and not childhood epipepsy.
We have been told Jacinta will have epilepsy for life and the best thing we can do is to control the seizures.
I was ok until i told my mum, Jacinta hasn't said much, only not to tell people she has it for life.

The plan with the AED's is to add Epilum, as she has said this works best with absence seizures.
I mentioned, and she is aware of problems we had with the Epilum syrup before, so she will try her on the Epilum Tablets, as they are coated and may not make her feel nauseas...I hope! and at this stage she will also remain on Ospolot.
We are starting today so hoping and praying it all goes well.

I spoke about Jacinta's learning problems, she will organise for the Epilepsy Association to visit her school, to educate teachers on absence seizures, as she seems to think they dont take it seriously enough and as a result Jacinta and other children "fall through the cracks".

We will be seeing neurologist again and doing an MRI in October.

Thankyou all for your support
Cheryl.

 

[epileric]

Well good luck with the Epilum

I hope it does work for her.

Meanwhile it sounds like you've got a great neurologist making sure Jacinta doesn't fall through the cracks re. her learning problems :rock:. I had a heck of a time in high school because there was very little for people that learned slower than the "normal" learning style. Stay on top of it & check in with her teachers often so that you can catch Jacinta if she's falling behind.

 

[Bernard]

Well, my wife was able to permanently stop her absence seizures with EEG neurofeedback, so there is a possibility that Jacinta's seizures are not a lifelong affliction.

 

[Loudmouth]

My daughter is 'falling through the cracks' in the education system here as a result of her epilepsy & learning difficulties. I am going to Home Educate her for the next year , her last in primary, as she will not be entered for her SATS tests and they are taking away some of what little help she DOES get to help some of the others who will be sitting the tests but need help to pass. She will learn more at home, and with starting E meds as well, it's better all round, I can fit the learning round her. I sympathise greatly, and hope that you can educate her teachers! to cope with her difficulties better. Good luck!

 

[jazz'smum]

Epileric i am really pleased with the neurologist and was quite surprised when she suggested getting Epilepsy Action involved.
I should say her school teacher was already going to do this, and he is still keen to talk to her class peers also...spoke to him this morning about her EEG,and new meds etc.A great teacher who will be sadly leaving the school soon.

Bernard , I will still look at Nuerofeedback,
Unfortunatley its a matter of money for me that stops me from doing the things I would like to.
I would have to find a neurofeedback clinic and work out the cost of treatment. So far where i live i dont think much is available.
Also I would love to not have to work ..big drama's having a day off to take her for appointments ..employees only have small amount of empathy.

Loudmouth, sorry to hear you are having problems with your daughters schooling, that is terrible what they are doing , seems that she will be better off being home schooled if they are treating students like that.
Good on you for taking the step to home school her, and the best wishes with the EMeds.

Jacinta also has one more year of primary school.
Hopefully we are getting there with the whole epilepsy and learning situation, its with thanks to this years teacher putting in 100% on wanting to learn about epilepsy and getting her the help she needs.

Thanks for your support
Cheryl.

 

[skillefer]

Hi Cheryl! Sounds like you have a great doctor to work with. Say "hi" to Jacinta. Sounds like she's bummed out about her seizures being permanent. But just remember, there is always research being done. So just because the doctor says it now..doesn't mean that things won't change. Good luck with the Epilim. Have you asked your doc about any of the other alternative therapies? Maybe to use as a complement to the meds....maybe vitamin supplements?

 

[jazz'smum]

Hi Skillefer

Thats something i should have asked and didnt..not too late though! i will be contacting nueros nurse to let her know how Jacinta is going on Epilum, so will ask then.

Thanks hope everyone is keeping well.