Re: Epilepsy/ESES; will my daughter's intellect and motor skills deteriorate?
I am very sorry that you have had to join this forum. I would like to say that it gets better over time but the truth is that as a parent, it will get better for me when my daughter is better. But it is true that we have made progress in overcoming our initial shock.
Our experience since March when the diagnosis of Childhoold Absence with ESES was first made has been a roller coaster. We were put on valproate acid (Depakin over here) right away and in just a few weeks, we noticed dramatic changes in our daughter. She had become withdrawn and looked a bit dazed and in just a few weeks, she was back to her old, know-it-all, cheerful, outspoken self. We "knew" before the EEG that the medication was working. The doctor had scheduled an EEG four weeks into the Depakin and the results were miraculous. The ESES had cleared, and the activity while awake was normalized. The doctor said she had seen very few cases of an EEG clearing up so quickly and that we were very unlikely to experience regression. We were ecstatic. Feedback from the school supported this outcome, the teachers were very happy with our daughter's performance, she no longer fell asleep in class, she was completing all of her assignments on time and was whizzing through tests. In fact she got an all-A report card for the term ending June 2012.
Our neurologist recommended that we continue getting monthly EEGs to monitor the activity and unfortunately starting early June, the EEG started to regress. We were first told that it looked like benign rolandic epilepsy and now A-typical benign rolandic (when we pushed for a diagnosis), and a second medication has just been prescribed. (Frisium/Onfi/Clobazam). We have not started yet because we are terrified that a second medication might trigger a seizure, or cause personality changes, or have some other negative effect. We will decide in the next few days.
In the meantime, our daughter is still doing great. She has not had a seizure, and she is her normal self. (Speaking of seizure risk, we are fortunate to have not experienced one, and I am sure it will be terrifying if and when it happens, but taking precautions and planning for one is also mind boggling. The medication that we were told to use is Midazolam in drop formats if the seizure continues for more than 5 mins. We were able to find some and left a bottle at school with instructions and a bottle at home. Since it's in drop format, we can't pre-prepare the dropper, the medication will go bad. So she either has to carry the full bottle and dropper around with her, or not. We have not found a perfect solution. We have also not told her she has epilepsy and that she has the risk of seizures because I don't know what we would expect her to make of that information)
Things are currently tense with her doctor as we appear to be questioning her judgement, did not start the Frisium and we are insisting on an over-night EEG. That will sort out. To top things off, when we went for a second opinion, we were told that our daughter does not have childhood absence and that we do not have enough information to make an ESES diagnosis (as the EEGs were in the doctor's office and only ever 1.0-1.5 hours long) and our original doctor told us that she never said ESES, she said "ESES-like". As a parent, I am not sure how to know what the difference is? but in any case, it is not possible to rule out ESES, we are hoping that the over-night will help us get to the bottom of it.
We are still very new to this ourselves.
I was on email looking through some older correspondence when I saw your response to my message. One friend that I met online through this experience said the following in one of her early emails: In normal epilepsies, the EEG is not as relevant as there is seizure activity. With ESES, first the EEG goes bad, then ESES develops which can cause neuropsychological damage. The ESES clears up over time either due to medication, surgery or time passing, and the child is left with the damage (if any) caused by the ESES. So what is most important is to clear up the ESES.
Based on what I have read, encountered so far, it is wonderful that your daughter's situation was caught at such a young age.
Please share your experiences. I wish you the best of luck.
Last edited by moderator2; 08-31-2012 at 09:26 AM.
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