Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Friday, March 12, 2010

Neurology Update

Today Ellie and I had an appointment with Ellies neurologist. All went well. He used an analogy that helped me understand Ellies EEG; refering to fire, and that Ellie had a smouldering fire with lots of smoke, but it wasnt a big fire yet. But at any time could turn into a big fire (Which means a big seizure) This means that her current medication is not providing the seizure control that we would like.

The EEG also showed that this time Ellies seizures are generalized, which means that they are coming from the whole area of the brain, compared to her EEG last year, which showed that her seizures were partial seizures (focal) which is seizure activity that originates in one part of the brain.

So the plan now is to take Ellie of Trileptil and put her on a new medication, Keppra. This however will take a few weeks as we slowly introduce the new one and decrease the other one.

Was I OK with this plan? Yes
Did I trust our neurologist? Absolutely
Was I nervous about this plan? Yes

The reason being I LOVED how trileptil worked with Ellie, she had personality, she laughed, she smiled, she was developing.

Thats not to say that this medicine wont work with her like trileptil did, but I dont want to see her go back how she was. The good thing is Luke and I know what to look out for this time.

I am hopeful that this is the right medication, but at the end of the day, all children are different, all seizures are different, all medications work differently on different children... its a matter of finding whats right for Ellie.
I am going to be in contact with Ellies nero to update him on how she is going and we have an appointment to review her progress in a few weeks.


  1. Sounds very similar to Violet's seizures. Her's start as partial and then generalise.

    We are weaning Violet of her Tegretol next week!

    It is worrying about changing meds and it's possible effects of them.

    I really hope Keppra works well for her. I have heard great reports on it.

  2. I know every child is different but I wanted you to know that we love Keppra. Tanner has suchan amazing little personality and has not had any seizures since September. (I'm knocking on wood right now). Occasionally he has had the little eye flutters that make us think he may need a boost in the dosage and that's usually what we (us and the neurologist) do. I hope it works as well for Ellie as it has for Tanner. Good luck, sweetie!

  3. I hope this is the answer for little Miss Ellie. I hope her adorable personality stays just the way it is and the medication does its job without doing anything else to her.

  4. We love Keppra too! It was the first med ever that gave Ryley back his personality! It has been the med (apart from the Ketogenic Diet) that gave us the best results with no side effects!
    I hope it works for Ellie!

  5. Chloe used Trileptil for awhile as well. It was definitely scary, but prayer and faith in our doctor's expertise got us through it. Wishing the best for sweet Ellie as well!!!

  6. allissa has been on keppra for close on 2 years - its wonderful !! trust me - her personality wont change - we are nearing reducing doses as been seizure free for a while ! Sami Xx