Scared

[Kelly]

Hi everyone. I'm new to the whole forum thing. Never needed anything like this before. My daughter is 13 and diagnosed with epilepsy last yr. She was having absence seizures. This hurt me. Knowing there was something hurting her and I couldn't protect her from it. She is taking lamictal and everything has been great. She said she was feeling normal again. She also has syncope and even that has seemed to get better. Yesterday she sat down on the couch to start her school work and was waiting for her computer to open to a page (she is in cyber school) and I happened to look over at her. She was starting a seizure. Normally her jaw will move a little and she makes some noises but this was different. She started shaking all over. I laid her down and begged her to be ok. It lasted about a minute. She came out of it confused and said she feels like she keeps having seizures. Then another started and this time she stiffened up for a few seconds and the shaking started again. When that was done and she came out of it she saw me crying. I tried so hard not to let her see it but I was so scared. She started to cry and after a few moments stopped and I knew she went into an absence seizure. She is fine now. They upped her meds and she will be getting another egg. I'm now at a total loss as how to handle this. Do I allow her to leave my sight? What if she has another one in her room and I don't know? What about showers? Or going to the bathroom for that matter? I am so terrified and am trying to hold it together but it's so hard.

I'm hoping this forum and advice from everyone will help me get stronger. Help me to cope and understand. Help me to feel less helpless. Thank you for reading this long message. I look forward to reading others posts on here and to no longer feel alone.

 

[marty]

Gday kelly .
I am sorry to hear what you & your daughter is going through , it frightend me when siezures started , i was having up to 7 grand mals a day but i still went out walking my dog ect i just fell over every now and then and had a siezure ( i am fortunate to live in a small country town and people tend to help ) i think that it`s important that your daughter gets support to help her through the tough times however she still needs to do things for herself , if your shower has a glass door could you leave the door open while she has a shower for a while in case she has a siezure whilst showering ( she wont fall on the door and possibly hurt herself ) get a rubber mat for shower , also have main shower / toilet door shut but not locked so if you need to get in you can , and just make sure that she is ok every now and then , she needs to get out and have a life and she can have a great life , if she falls over every now and has a siezure she just has to get up again and laugh and play ect .
i wish you all the best .

 

[Nakamova]

It's normal -- but no fun -- to feel scared. Hugs to you while you are weathering this latest change in your daughter's health. I think you should talk to your daughter's neurologist about how watchful/protective to be. You can't shadow her every move and wrap her in bubblewrap, but it may help to be a little more vigilant and careful just until you know if the medication increase is helping. Keep track of how your daughter is feeling, and set regular times to check in with her.