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Feeling Lost

Tue, 09/20/2016 - 22:39
ok so almost a year ago in October I found out my oldest who was 8 now 9 was having absence seizures. In November of last year I then found out that my youngest daughter who was 5 now 6 is having grand mal seizures. I also have a 15 month old son who was about 5-6 months old at the time. I am a single mom of all three of my babies. The meds are working for my oldest which is awesome. She of course is acting like a normal 9 year old going on 16 with attitude. my 6 year old on the other had had another seize on last Wednesday evening. We had not witnessed any during the summer since last April. Hers usually happen at night when we are all asleep. Very rarely are we able to witness them. It terrifies me like no tomorrow. Her doctor upped her dose from 100 to 150mg. And said she has more than likely been having seizures with out us being aware. I asked if we needed to do any test and she said no since they seem to be the same types of seizures. The doctor also said she was going to look into a seizure dog for my girls since it is both of them and it would be beneficial. That is great and all but I am looking at it all and freaking out about the cost and all the forms that have to be filled out. I called the doctor again today and asked if they had found out anything about getting a dog, to find out what the reasoning once more was on the no tests blood work or anything, and I believe my 6 year old had another seizure but this time spacing out while watching TV it had lasted about a good 15 to 20 sec and I tried calling her name 6-7 times and no response. I didn't get a head jerk or anything. I also watched her and she seemed to sort of come down off it and then I called her name again and she then proceeded to be aware that I was talking to her. Of course my boss thinks I am blowing it out of proportion and that I really should not call the DR every time she has a seizure. But I am concerned and want to know what I am seeing is a seizure or is it normal behavior. My boss also believes that my daughters seizures aren't that serious. How is that? Seizures in general are terrifying and stressful. On a day to day basis I either get notes, phone calls , or me having to go visit my 6 year olds school because of her behavior. She is also not retaining any information and this is her second year in kindergarten. I feel horrible for my child and I wish I could make is whole nightmare disappear for all of us. My home is a war zone. Not a happy safe place. I want to cry almost every second of everyday . I am sure there are many of you out there that have worse than me and all I can really say is God Bless you! You are the true strong ones. I am stressed to the hilt.

Comments

Hi Amy. Yes my daughter has

Submitted by ckiekens85@yahoo.com on Wed, 2016-09-21 - 09:08
Hi Amy. Yes my daughter has had two EEGs so far. The last one we had was this past February. Thank you for the advice.

This I believe is the first

Submitted by ckiekens85@yahoo.com on Tue, 2016-09-27 - 23:31
This I believe is the first she has been on and I report evert hung to her doctors. We have titrated her up three times now. 

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