Tuberous Sclerosis and Seizures
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Uploaded by karenueland on Aug 18, 2008
I have Tuberous Sclerosis, I have growths in my brain that makes me have seizures. Please help kids like me.
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This almost made me cry :(
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Me and my mom and sister have it to. My one sister died due to it and my other sister is dying due to it. My son died and I nearly did, since I am in entertainer I am causing awareness. I wish there was a cure, it is nothing fun to go through.
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im 11 and i have tsc :*(
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I have daughter(7) that has TSC, watching this film make me realize how blessed me and baby is. We found out the end of 2007, it was really bad up to 20 seizures a day. I was told expect the worst, but now IM COUNTING MY BLESSING! By the grace of God my baby has been seizure free for over two yrs.I will keep you in your family in my prayer. May God bless!
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Very cute little girl good job not being scared.
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my four year old son has tsc he started having seizures when he was five months old he is currently on the third seizure medicaton that his doctor has tried and so far the only one that has some what worked is keppra but he still has in between 3-7 grandmal seizures a day and we found out in april that he has a 5mm size brain tumor and the doctor dont want to do surgrey until its 10mm because it is to small to remove i pray that they find a cure for tsc
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Beautiful! It brough tears to my eyes. My heart aches for these brave little children who face the daily challenges of TSC.From one parent to another in the TSC family, thank you for sharing your story! Hope all is well with your beautiful little girl.
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I never had it quite as bad, but I can't atnd having the illness
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I work at a Crisis Pregnancy Center and we also have an OB clinic for the pregnant women/girls, my ultrasound tech found the tumors(rhabdomyomas) in my grandson's heart at 22 weeks, their doctor in Indiana had missed them. He was diagnosed a few weeks after delivery by genetic testing with TSC. He started the infantile spasms at 4 months of age. He is on Keppra right now & the seizures have increased some. His 1st MRI was clear , Praise God. I am praying for your baby girl, God bless.
dmsneddon50 1 year ago
@dmsneddon50
Hello,
My grand daughter is now 6 years old. Has your grandson ever been on Vigabatrin( Sabril)? My grand daughter never had spasms but is on Vigabatrin and it has worked miracles for her seizures, she is also on Keppra and two other medications. I know the spasms are bad. Feel free to contact me by e-mail at klpu@aol.com. Not that I am an expert, but I have learned so much these past 5 and one half years. Good luck
karenueland 1 year ago