Advice for Young Siblings:

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

P

purseynursey

New
Messages
20
Reaction score
0
Points
0
My daughter Nora has multiple types of seizures. Most have partial complex but this week she had 2 Tonic Clonic!!! I did not handle them well but Im more worried about Noras older sister Abby. She is 14. She watches her sister after school for about 2hrs. Her and I both are terrified that Nora will have another Grand Mal while Abby is alone her. I have gone over all the safety rules again, showed her the Diastat , made a plan, and showed her videos of Grand Mal seizures. We both cried and cried as we watched. Im not sure what else to do to make Abby more prepared and less anxious. Ideas Welcomed
 
Hi! You are not alone. My 11 year old has been recently having seizures and my 16 year old is the only one (other than my husband) I trust to watch her for short periods of time as needed. She has seen her seizures and post-ical behaviors and knows what to do, roll on side, watch the time, etc. I too feel like this is a heavy burden to place on her but I dont know what else to do. I cant be there every second. Its tough!
 
I think you've prepared her as best you can really. With luck she won't need to draw on her knowledge. I worry about my kids being alone with me if I have one. I'm trying to educate them as best I can but I've told them that if it happens to run to one of our neighbours who is almost always home and just ask for help. That way an adult is there helping make the decisions. Is there someone your daughter could turn to for help?
 
Yes we do have a close neighbor and that is also in the plan. We are thinking of running a drill so to speak where my husband or myself act out a seizure and have her respond. I feel just awful putting Abby through this.
 
I was very concerned for my two children when they were growing up as I was the one in the family who suffered seizures, CP & TC. And my husband was a pilot, we had NO family around. My kids witnessed many seizures when they were growing up, so I did what I could to educate them about epilepsy, taught them to dial 911 if needed, which my daughter did when she was 7 years old, with the help of a neighbor. I also got info from the local Epilepsy Foundation for kids and did tell all neighbors and friends. Kids are resilient, although I felt awful and guilty that my kids had to go thru this. But all my doctors reassured me none of it was my fault, so no need to feel that way. Crap happens!
 
Kids are amazingly resilient and strong. Your older daughter may be anxious (which is normal) but I'm sure she'll rise to the occasion if need be. I think running a drill is a great idea, it can make the whole process seem less strange and fraught.
 
It doesn't matter how old you are, family is going to be worried about what is going to happen when you have a seizure when they aren't around. I'm 35 and was diagnosed with epilepsy 9 years ago.

My parents and husband are scared to death when I go out with someone who has never seen me have a seizure and they don't know if that person is going to know what to do if I have one.

They explained what to do to my husband when we first started dating and two weeks two weeks into the relationship I had a horrible seizure with him. This was the first time that he had ever seen anyone have a seizure before. He called my dad when he realized I was having the seizure and my dad talked him through it over the phone. The seizure was so bad that he called 911 and I ended up in the ER. He stayed calm there too. Now he's seen me have so many seizure's that it's just routine of what to do.

How many seizures has Abby seen Nora have? I hate to say it this way, but the more the better (sorry). The next time Nora has a seizure let Abby handle it. You'll be there to make sure she's doing it right and you can correct her if she's not.

Is there anyone that she can call that can help her? We always tell anyone that if the seizure is too much for them to handle then call 911. The person on the phone will help her go through everything until the ambulance gets there.
 
Abby has never seen a Grand Mal. Nora has only had 3 of them. Abby has seen hundreds of smaller seizures but they are easy to deal with. We just lay her down, she sleeps for 30the mins then pops back up and is fine. I know that seen mant seizure would help us all but honestly I dont think I could handle that and Im a critical care nurse!!! I think for me its the fact thst usually when I see someone have a seizure at work in the hospital they are dying and their brain is starved for oxygen for anorher reason like heart attack or stroke so the patient ends up having a horrible outcome whereas Noras seizures are a primary symptom and she will recover with no long term harm. That being said when the Grand Mals happen I forget that all and panic. I told 911her she wasnt breathing!! Of course she was breathing she was crying out!!! But at the time I swore she was dying in my arms!!! I can truly now understand PTSD. I cant walk into her bedroom without getting nauseous and my heart pounding!
 
purseynursey said:
But at the time I swore she was dying in my arms!!! I can truly now understand PTSD. I cant walk into her bedroom without getting nauseous and my heart pounding!
Click to expand...

If you can understand PTSD, maybe you could use some therapy, since it is your own child having seizures. Like I said earlier, my two KIDS witnessed their mother having bad seizures and thought I was going to die, also, but they made it through with gentle counseling and telling them again and again that I was okay. Get some info from your local Epilepsy Foundation for teenagers and parents.
 
I have contacted a support group but it is mostly dormant because of lack of interest which surprises me. My husband has suggested a therapist as well. I cant imagine life going back to normal but Im sure it will. It seems that the CWE members all deal with this so well but right now that doesnt seem possible.
 
All 3 of

my kids have seen my seizures, and I have tonic-clonics primarily.

My daughter has had to call 911 as well, and she was only 4 at the time. (I was going through a med changeover then.) She and her 2 1/2 year old brother kept their heads, rolled me on my side, just as I told them, and she called 911.

Your daughter, Abby, will be all right. She needs to learn to trust in herself, and that you trust her as well.

You need to understand that while it is EXTREMELY hard for you to watch as a caretaker, your daughter who has E will truly appreciate everything that you do for her later on, and that you don't freak out.

My mom flipped out when I had one at a anniversary/family reunion (I was pregnant with my daughter who suddenly caused the meds to fluctuate--the blood levels were perfect the day before we left. I wasn't allowed to leave town without names of hospital, doctors, nurses, etc to give my doc). My mom's sister's told her off for over-reacting (I was "being an embarrassment to her") and we didn't talk for quite some time.

You sound like a great mother, so I don't mean to come across as too harsh, but DO get it together a bit so you don't go through a situation like above, and find some therapy. Understanding PTSD means that you understand the situation in general.

Take care, and lots of hugs,

Meetz
:rock:
 
You must log in or register to reply here.
Back
Top Bottom