Kasei - posted on 03/27/2009 ( 3 moms have responded )
Jahel started having seizures while I was pregnant with him. He was seizing when he was born and has done so every since. He is 3 1/3 and has been hospitalized uncountable times and coded atleast 5. Has had many eegs, mris, cts , genetics testing, the regular work ups, inner crannial eeg, complete corpus colosotomy, and just had the VNS put in.
The complete corput colosotomy was soppose to stop his granmal (sp) seizures and it did for a bit but here over the last week he has went status 2 times and for hours at a time. One Dr. told me it was ok to keep him at home and just give him his buckle( valum) and watch him if he turns colors then call 911. The other came unglued when I relayed this info yesterday. His VNS got turned on yesterday so we are hoping something good happens with this. All of his Drs. have given him a life span of 5yrs. He seems to be going downhill here lately the seizures are picking up and meds levels are going toxic so we lower them then get levels down a bit and he has been on over 10 different meds and med combos. The have flat told us the only thing left to try is another inner crannial eeg because one side of his brain has 1 actve seizure hot spot the other side has 2 and they think the side with the 2 are feeding off each other. If the VNS dosne't work in 3mnths was the original plan then yesterday they tell me a month they are gonna start working him up for the next inner crannial eeg and possible lobe removal. I went through this once he coded 2 times from resp distress and the pain he looked like he was in made me hurst everyday. As a mom I know we have to suck it up and that God gave us our special children for a reason and Jahel is a happy loving boy who even though he cant say more than 5 words you can understand still gets his point across. He loves to kick the soccer ball and play with his balls, blocks , and cars. The fact that the thought of loosing him has been made so blunt even though we have been told from the start it's just getting to me more and more each day. I have 2 other children as well and It's very hard to make a 6yr old understand why we can't go to the park because Jahel had a bad night and can't stop shaking or sit up straight without falling over. Things like that get her so frusterated. How dose one deal with this without the other kids always getting put on the back burner. Sorry for this being so long I guess I had alot I needed to get off my chest to people who understand. Thanks