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Daughter has to have a VEEG
Mon, 08/14/2006 - 19:55Topic: Parents & Caregivers
Well, they have scheduled a VEEG for lauren for next monday, She is having so many absence seizures per day that it is not even funny anymore, at least 10 or more a day.
I just know that I want to know what is going on and causing all this. she has been doing so good and controlled, and all of a sudden this happens. It is just not fair, this is my baby girl.
These seizures are some of those where if you blink you will miss it. It almost seems like she is just daydreaming constantly, but she says she gets like she feels like she is shaky inside, then she will space off a few seconds.
I know this may sound bad, but I almost hope they find something this time, so I can know what we are dealing with. I am scared, I admit it. I don't understand why this is happening to my daughter. I just want to know.
The timing could not have been worse either, her 9th birthday is next week, and now we have to delay her party becuase of this. her party will now be 3 weeks late, becuase of labor day and everything else.
and I want my daughter back, she has times now when she is scared to ride her bike or do anything, she does not want to have one while riding her bike, scared she will fall.
Keep us in your thoughts and prayers, I will keep you posted on how everything is going.
Thank you for listening to me rant.
Tchaide05
Comments
Re: Re: Daughter has to have a VEEG
Submitted by tchaide05 on Tue, 2006-08-15 - 17:09
when your daughter had her veeg, did they find anything? she had one last year in July, but they did not find anything. I just know that I am so sick of this today she was having them back to back. but at least she is not letting it stop her. she actually got the courage to ride her bike again. I just feel bad cause she is getting ripped out of having her party when she wanted to. Lauren is already on medication, but not for absence seizures. not sure what is going to happen or how long we are going to stay.
I am just sick of this unknown part. if I can find out what is going on, I will be alot happier, at least find out where they are coming from.
Mom to Lauren age 9,
Re: Re: Re: Daughter has to have a VEEG
Submitted by macsmom on Wed, 2006-08-16 - 08:39
Mac had an EEG in July of last year, which showed some spikes but nothing abnormal. Still I knew things were not right. She quit doing some of the things she loved, like competiting in baton twirling, because she was embarassed. They decided at that point not to do anything but watch. However as time progressed the number per day increased greatly. By early December she would have 30+ a day. School started to suffer, and I like you just wanted answers.
Over Christmas vacation we went to a hospital 75 miles away to do the VEEG. I expected to be there for three days. However she was having so many that they released us the next day. We have been struggling with the dosage of medicine, but the number has greatly decreased. It has been a real eye opener as I did not know anything about absence seizures before this. I have not met anyone in our community who has a child with absence seizures so this site has been wonderful.
Kids are resilient and I am very proud of how she has handled all of this. I on the other hand have got to remember to let her be a kid and not always be so protective. But as a mom my first instinct is to be over protective.
I hope and pray that you all find answers, it is extremely difficult to be in limbo. But always know that if you need someone to listen or talk the door is open.
Deb
Re: Daughter has to have a VEEG
Submitted by macsmom on Tue, 2006-08-15 - 09:43
Tchaide05, Reading your post was like reading our own story. My daughter was also 2 weeks away from turning nine when she was scheduled for a VEEG. All we wanted were answers. We were scared and did not understand what could be happening to this otherwise healty and very active child. I to was very scared, it was difficult to explain to others when I my self did not yet understand. My daughter was placed on medicine while in the hospital. It has greatly reduced the number she has per day but they are not yet controlled. We will keep you in our thoughts and prayers and if you need to talk or vent the door is open. Deb (macsmom)