just got home from the hospital!

Christine - posted on 07/24/2010

Tajunanne your story is alot like mine... My son is 17 and they told us he wouldn't live to see 1. Josh had a tramatic birth due to neglect and started having seizures an hour later. He spent 9 days on a vent and 2 weeks in the NICU. Then was what we thought seizure free. We never saw a seizure that we knew of. We were young and didn't realize babies were not suppose to stare off for 2 or 3 min. When Josh was 14 monthes we were at a routine neuro appt because he has CP and Josh started seizing. He seized for 45 min that first time. We thought he was dieing. That was the start of a very long summer. We were in the ER atleast 3 times a week. He would go into Status seizures. When they did his eeg they told us that 1/4 of his brain had atrophied and that the little bit that worked was in a constant state of seizures. We have been on every medicine possible. When Josh was 10 we had the Vagel nerve stimulator put inand he seized nonstop for 1 1/2 years. But then they finally slowed down. Now that he is in puberty they are bad again but there really isn't anything we can do but pray. Honestly the fear never goes away but you learn to be a teacher and teachthe people around you to know what too look for and too not freak out. I have learned to shut off my fear and do what needs to be doneat the moment and when the crisis is over you thank God and move on... The school system never saw Josh have a seizure till 2 years ago because we got so good at knowing the signs we would keep him home. Until they started calling child services on us saying we were endangering him and lieing about his condition. SOOO we started sending him... Now they beg us to keep him home. I gave my youngest son a job to do during a seizure one day because he was so scared. Since then he is right there asking me what I need. He is still scared but he won't move till its over... Give your other children a job to do. Whether it is getting you a rag for your childs face or whatever. It will help... Good luck and please feel free to add me to your FB or COM

Tajunanne - posted on 07/22/2010

well parents let me tell you the story of my 20 yr old life.; His seizures start when he was 1 we think he had asthma but 1 day i got a call from nursery to go to the hospital i thought a asthma attack but no a siezure. About aweek later he was at my cousin house she woke up he was blue on the floor another and for about 2-3 months he never had a sie zure on me. On day i was drive to my mother's house to wash well about 1/4 way there he started to have a seizure and when you need help theres not a cop insite i was during about 65 miles in a 30 mile area trying to get to my moms house it took me about 15 minutes to get there when i pull up i was blowing then horn crazy so she ran out i was screaming he's having a siezure so we took him out the car in the house she started working on him and i call 911 my moms a rn; they got there: another 15 mins went by he still siezing rescue then the ambulance got ther he still seizing other 15 mins go pass nothing work so they call rescue to help another 10 goes pass they put him in the ambulance tryed to lock me out i told the police if my son dies i won't be outside so i get in they call rescue back to my mom house this seizure is now 1 hour & 15 mins long so they decide to leave and go to the hospital that took 10 mins get him in the room it lasted about another 20 mins finally that 1 stop 5 minutes later another 1 starts that was a grandmal siezure after that he start having almost a 100 seizure a day he have 6 different kind and has been on every medcine there is now he takes 5 different kind but the doctors didn't think he would live to see 10 no longer 20 he has Lennox-Gastaut and he will never be seizure free so keep you head up your prayers higher love your child to the fullest spoil them give them your all( i understand you scared but just learn to turn her on her side until the seizure stop and breath because she needs your strength and love and teacher her brother to do the same