Rylan hasn't had a seizure since Sunday Oct. 2, 2011. I normally do not let Rylan cry his self to sleep for that very reason, that he could go into one and i knew i should have listened to my gut (always happens that way) I just ignore it and then i feel bad afterwards. I was trying to get him to take a nap because he was really crabby that day, and i could tell he was tired. I put him in his pack n play and closed the door and walked out while he is just wailing away. He was REALLY upset. He was tired but he did not want to sleep. So after 15-20 minutes of listening to him cry I went in the room, picked him up and got him to calm down. I swear he was sleeping because of the way he breathes when sleeping he sounded just like he was a sleep but when i looked at him his eyes were wide open. I sat down with him and started rocking him in my arms and he goes backwards in my arms, and I tried to get him to lay against my chest again but his whole body was tensed. He would not relax his body so i had to hold him so he wouldn't fall backwards and the whole time he was having a Complex Partial Seizure. I had never seen one like that before it really worries me that his are changing into the big ones :( in which time i would freak out. I would not know how to handle one. We have his appointment with the neuro on Nov. 1st so I will be discussing this with them.
I just wish it will all go away for him. I do not like to see him like this, and it doesn't seem like his meds are controlling them that well either. I just have to keep hoping that one day they will find a cure for this so everyone effected by Epilepsy will be cured.
I have been trying to comment on your page for a few weeks now. What a hassle! I am sorry you are having such a hard time, I don't wish this is anyone. I wanted to ask if they have done an ambulatory EEG?? It is the only way we finally got a positive diagnosis. I stopped all medications against the doctors wishes, but after 18 months I wanted to know what was wrong. I figured I have seen 129 seizures in 18 monthes and could handle a few without medication. We now begin the long battle of controlling these monsters...anyways I prefer to discuss matter in an email if you ever need to vent. I will listen with a open ear and a big heart. My prayers to you and your son.
ReplyDeleteaww. . .thank you very much, prayers are definitely needed. And I will pray for you and your son too. I actually found your video's on youtube before my son was diagnosed in July. It helps me a lot seeing videos and knowing that we are not the only one's going through this mess. My son was almost seizure free for a month and then it came back and now it's worse because he has developed a new kind of seizure :/ so this is very stressful and i know where you are coming from. They have not done an ambulatory eeg yet, but i would not mind if they did. Something i can ask about. I hope we can one day see our children seizure free. If you ever need to talk my email is baronlizzy1985@aol.com or i am on facebook too lol
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