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Need some advice please help

Tue, 05/29/2012 - 01:16

My daughter was 4 at the time of her first seizure, it started with some odd breathing which I figured she might of been having a bad dream so I rub her face and told her it was ok, but she didn't respond so I knew from there something was wrong, I told my husband to turn on the light and there she was barely breathing, her face was blue, and she wasn't moving just limp. We tryed everything to wake her up but couldn't so I called 911 and from there she was transported to the ER and after testing she was dignosed with Beign Rolidic Epilsey (sorry for the miss spelling) this was all new to us. So we went with the answer, we hardly got any sleep due to fear of something like that happening again. About a month or so later she had to go and see a doctor that our inusrance would cover (my husband at the time was military) we made and appt with him and told him what had happened he then told us that he wanted us to keep a log of what we see, and we did we then noticed different kinds of seizures such as starring off unware of her surrondings as if she was dreaming she would then wake up and carry on from where she left off, not realizing minutes have passed by. She then starting having blinking seizures when she would watch tv/play video games, the blinking was not your normal blinking it was very rapid and all we could do was rub her back and ask her to lay down and relax, others that she has had is where her pupils would been so enlarged you could hardly see the whites of her eyes, she had another major one where her lips were smacking while she was sleeping and her cheek would vibrate her body become stiff and and she starting jerking.  We kept logging all of these she was having about 6 seizures in a week. She went back to the same military doctor who had done another EGG testing on her and told us that she was not only having activity on the right side of her brain but the left side as well he told us it was called simple partial onset seizures, she was then put on Tegertol (Carbamazpine) she was taking about 350 Mg a day everything went fine for 4 months and then we started to notice her addtitude changed, she was angry she would cry all the time for no reason she was just miserable, we knew this medicine was not right for her. We ended up going back to the first doctor that had seen her when first was dignosed (due to insurcance reasons). She told us that the military doctor could not of seen those kind of results or seizure activity in 30 mins, so she wanted us to do a 48 hr EGG she told us to ween her off of her medication two weeks before the test, which we did.  She went in for her test and everything was fine she had no major episoides she had a few mild ones while sleeping she had tighting of fists and jerking or her arms and shoulders, so we logged them and told the nurse she had even saw the same things we were seening. On the second night of the testing we were asking for the doctor to come and tell us what is going on and if she had seen anything the nurses and then told us she should be in she works until late so she should see you shortly, so we waited. It wasn't until the next morning that we got a answer from the nurse that we were being discharged and there was nothing on the EGG, so I then started to get upset and I asked why the doctor would not come and see us to tell us this herself why she was just sending us home with no answer as to what happened and or what was going on, the nurse explained that the doctor did come about 3 am in the morning quickly looked at the results and saw nothing. We were confused at this point so I told them I wanted to see a nuregolist before I left to help explain this to me, so they called one up, during the time I waited for the nureo to show up  I wrote down some questions I wanted answered just some general questions

such as what were the results

Do you think the meds have left her system 

His answer: looks normal but it takes two weeks to process

Do you think we should do this again 

His answer: No

Why are there two different dignoses 

His answer: there is no difference they are the same thing (pertain to the BECTS/ and the simple partial onset)

Why the sudden changes  

His answer: She is probably growing out them

This is where I am at today and I am still confused on what is going on with my little girl what is the proper dignoses, should I go see a different doctor, does she still have epilsepy, and how could she just grow out of it in 9 months. 

Comments

This all sounds very familiar

Submitted by O'Connor Family on Thu, 2017-03-09 - 09:24
This all sounds very familiar. My 3 year old had her first 2 grand-mal siezures on feb 18th. After 2 days in hospital we were sent home with a BECTS diagnosis. We are currently doing the 48 hour eeg at home. I will get back with you when we get the results. 

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