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Old 03-28-2012, 04:11 AM   #1
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yasemin88 HB User
Epilepsy/ESES; will my daughter's intellect and motor skills deteriorate?

I would appreciate if anyone can share their experiences. My daughter has not experienced any physical seizures to date, and intellectually, socially and otherwise she is on par with her peers. We took her to a neurologist after feedback from the school that she was recently having trouble concentrating and she had started to fall asleep during class. She was diagnosed with epilepsy with strong ESES activity during her sleep. Everything that I read on the internet suggests that she is likely to experience a deterioration in her IQ, motor skills and temperment. Is this what happens? Any feedback will be much appreciated. She is 9 years and 3 months

 
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Old 03-28-2012, 04:55 PM   #2
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Re: Epilepsy/ESES; will my daughter's intellect and motor skills deteriorate?

Quote:
Originally Posted by yasemin88 View Post
I would appreciate if anyone can share their experiences. My daughter has not experienced any physical seizures to date, and intellectually, socially and otherwise she is on par with her peers. We took her to a neurologist after feedback from the school that she was recently having trouble concentrating and she had started to fall asleep during class. She was diagnosed with epilepsy with strong ESES activity during her sleep. Everything that I read on the internet suggests that she is likely to experience a deterioration in her IQ, motor skills and temperment. Is this what happens? Any feedback will be much appreciated. She is 9 years and 3 months
She will NOT experience a deterioration in these due to her seizure disorder. I don't know what ESES is, so if you want to tell me and I know, I will gladly answer your question. I have had seizures for years. Be careful what you read on the Internet, especially about medical conditions. Oh, don't even begin to worry about her social skills, if this is about seizure disorder. That kind of reading will make anyone lame and is very dangerous.

 
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Old 08-30-2012, 03:02 PM   #3
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Re: Epilepsy/ESES; will my daughter's intellect and motor skills deteriorate?

Hi,

Terrified isn't the word is it..... My 5 year old daughter was diagnosed with ESES last week and just like your daughter she has never had a TC seziure she is completely at par with all her friend's and met all milestones in perfect time. i'm so afraid of everything i've been reading and can't seem to put the pieces together because when I watch her playing and interacting with other children the things there telling me just don't match up. She has a hard time focusing in school and can't seem to stay on task for a long period of time but she has such an amazing imagination that I truly never would have thought this would be the case when she went for her EEG which we requested because her teachers were telling us about the focusing issue on almost a daily basis. She has been put on 10 mg of diazapam but her neurologist was really pushing for my husband and I to put her on valporic acid the problem was we read all the horrible side effects from it and just couldn't do it(not sure if we made the right decision or not) She is going for another EEG on Oct.3rd. My biggest fear is the "what if's" I can't stop mself from thinking that all the things i'm reading are going to happen to her. And I can't seem to get any definite answers from anyone even the neurologist kept saying "I can't answer that"
It's always nice to have someone to talk to that's going through the samething especially when it feels like your grasping at straws for help and advice.

I hope your doing okay--one day at a time(or so everyone keeps telling me)

 
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Old 08-31-2012, 06:08 AM   #4
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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 08:26 AM. Reason: please do not post a commercial website for any reason

 
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