Being happy doesnt mean that everything is perfect.

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

Monday, January 18, 2010

Neurology appointment update

Today we had a appointment with Ellies neurologist. We discussed how Ellie had been, mainly over the last week, as up until then we had not noticed any seizure activity. Over the last week Ellie has had 3 obvious seizures and quite a few absent seizures or vague moments as I describe them, the most recent was 2 yesterday.

We also discussed how Ellie had been so unsetteled and hysterical for most of last week after her seizures reappeared, his thoughts were this could be one of many things such as:

1- Increased seizure activity that was making her iritable
2- It could be due to a medicine (clobozam) that we took her off, that she could have possibly become sort of dependant on or liked the way it made her feel as it seemed to control the smallest seiures
3- Or the simplist reason, she could just have had a bad week, felt unwell, teething etc....

Who knows..... SO... where to from here. We have put Ellie back on the clobozam, (as well as her being on the trileptil) as the clobozam seems to give great seizure control. If in 1 week we have not noticed and sort of seizure activity then we will take Ellie of the clobozam and see how she goes, back just on the trileptil. If the seizures appear to get out of control again, then we need to reassess and she may need to go on another medication or we may need to add another one for her to be on together with the trileptil.

I am happy with this, as there is a plan in place, I think however the hardest thing is, you never know how things will go. It is all trial and error, and a matter of finding the right medication and the right dose for Ellie.

I have to admit, I am happy with the trileptil, in the sense that Ellie still has her personality with it, she smiles, she talks, she laughs, she is happy, where this did not happen on the previous medication, so ideally I would love to see the trileptil control her seizures... Once again, fingers crossed!!

This afternoon we have physio and our new occupational therapist is also coming... YAY!!


  1. Mel - the pictures on the last post are SO ADORABLE! Ellie is so beautiful!

    So sorry that she (and you) are going through the guessing game with seizures and with meds. I hope that it is a successful trial the first time around and not so much "error."

    love to you guys!

  2. my pray will always be for you all!