mother of 3 year old with seizures..help anyone

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Hi My daughter is 3 1/2 and has been diagnosed with seizures since 6 months old. We have always had normal testing (eegs,mri,catscans) she had a seizure in the Doctors office so they knew she had them. We have been on alot of different meds. we just recently had an inpatient video eeg and we now have a real documented name...Generalized seizures absence and atonic(drop) I thought that because we had never caught one on a test that maybe she really did not have them and that we would just wean her from the meds and all this would be a bad dream that lasted almost 4 years. I was not prepared and I am having a harder time with a name for it then when the dr. first said it was a seizure I had been trying to describe for the first 6 months of her life. we are not doing anything different now then we did before we had a real diagnosis. I hate that my sweet baby girl has to deal with this and I wish that we could take this away for her. We have a hard time leaving her she has fallen and really bumped her head and fallen and gotten really hurt, I have to learn to be ok with this and treat her normally but it is so hard for me. She also has a sensory disorder does any one know if these things usually go hand in hand. I would love to talk to anyone that has felt this way or has a encouaging story to help me. I want to be the best mom and give her the best care, she is my baby girl. I also have a 5 yr old son and I feel guilty because it seems he sometimes gets put on the back burner,wether it be she had a seizure or we have to go to the Dr. or whatever...Please any advice is greatly wanted and needed!!!!!!

Comments

Re: mother of 3 year old with seizures..help anyone

Submitted by txrhb1 on Fri, 2006-08-18 - 23:08

I'm so sorry for what you are going through ! I know how scary the actual diagnosis is. My 23 year old daughter has had epilepsy (generalized tonic clonic seizures), since she was 9 years old. It has been both a frightening road, and a glorious one. There are good days and bad days, and in our case, I have to say the good has outweighed the bad. She just had a baby, and although the pregnancy was a bit difficult due to the seizures, we now have a beautiful 5 month old granddaughter, and she is the light of our lives. I still have a problem leaving Jessica alone at home at anytime, but I have had to learn through the years to try to give her as much independence as possible. Over the years, we have learned her strengths and weaknesses, and put support systems in place to help where she needed it. While she was in school, we worked with the administration and the special ed department to ensure she got any extra support she needed, and that all involved were trained in how to respond to a seizure. Right now, she is living with us for a few months. Her seizures are at night, so we keep a baby monitor in her room, and we react if she has a seizure, and we take the baby to our room for the night. I have 6 other children, and at times, I felt that they were being put on the backburner also. My husband and I worked hard to try to balance Jessie's needs and the other kids needs. It was hard, but according to my kids (all but 1 are adults now), it was successful. Do you have any family or friends nearby that can step in and make sure that your 5 year old gets what he needs if you are involved in your daughter's care at the moment? My mother in law would take some of my kids to the movies, or to their sporting events when necessary. I hope it all works out for you, and if I can be of any support, please don't hesitate to e-mail me. ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Re: mother of 3 year old with seizures..help anyone

Submitted by EKlairsmom on Fri, 2006-08-18 - 23:27

Thank-you so much for the encouraging words. Wow!!! 6 other children How did you manage it? Here I am having a pity party for my 1 other child. We do live around both grandparents and they are more than happy to help out...me being "MISS I CAN DO IT MYSELF" has had to learn these past 3 years to call on them, more than I like. My daughter is not potty trained, did you all have issues with this? I feel like I do not really care about it because we have bigger worries and concerns, until we are out and people make comments about her being so old and all. My husband tells me I need thickier skin...maybe he is right..just do not tell him! Thank-you and I would love to e-mail you if that is alright. Emily Klair's mom...Kari

Re: Re: Re: mother of 3 year old with seizures..help anyone

Submitted by txrhb1 on Sat, 2006-08-19 - 00:49

Feel free to e-mail me anytime you want, at txrhb1@yahoo.com . I would be more than happy to talk to you. We did not have the potty training issue because Jessie did not have seizures until age 9. We did go through several regressions, more emotionally than anything. We held her back in 3rd grade, which was the best thing for her. She had been through a very emotional time as her birth mother was killed in a car crash, Jessie and her sister were with her and survived. We became their foster parents at that point, because we already had all her brothers and sisters. It was a difficult time, and I have been through almost any version of child and teen issues you can think of. But.....life gets better, and the kids grow up to be healthy adults, with great lives of their own, and now I just get to spoil my 12 year old (home-grown), and my 11 grandkids!! ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo