My adult daughter just started having seizures

[Jessdenn82]

hey mum got a reply to what I was asking you earlier

WTF ???

quote
Yes, I get both.
Those glittering floaters in you vision are, at least in my case, an aura. I call them now "tiny witches" thanks to a really funny description of them in another thread.

The short of breath and heart race is another one of mine. Sometimes I get this after I have had an absence seizure. There is no real indication sometimes when I have these, but I notice that my heart beats super fast when i come out of it, *the ones where my fiance tells me I just had one* I can feel my heart racing hard and fast. plus I notice that my breathing is laboured and I feel light headed. this is because sometimes i hold my breath during an absemnce

 

[Rae1889]

Yup, I quoted that. I now know both sides of the sotry though...

 

[gigi]

Fit Chick:

Rae is right on. This is like the out break of a war, so re-grouping the troops, and having a plan of attack is in order. Our normal reaction is to stress and freeze up. Time to be proactive, and exhaust all your resources to make sure everyone is involved in the final solution.
Talk with the kids, educate yourselves (CWE!), get the medical attention needed. Explore the triggers that are unique to your daughter, as well as epilepsy as a whole. Diet, ELECTROLYTES, hormones, getting her sleep, taking medication when she is supposed to and at the same time.

Take care, and stay in touch.

gigi

 

[fitchick1961]

thanx all for responses, my daughter is now on here under her own name, so that's gr8 for her, I'm trying very hard to see it from her perspective, just hard some times, but i'm listening, I don't mind any advice or criticism lol, that I might get, I'm open to anything that will help make a very difficult situation any easier to handle. Jane.

 

[RobinN]

Fitchick- I don't have any answers for how your families should deal with her seizures. I do know that over time you will know what to do. It is very scary at first.

After that is taken care of, and all the necessary tests are done, and you know that there are no tumors and such. Please come back and read all you can on nutrition. There is a connection between what you put in your mouth, and the health of your GI system and neurological disorders. She is a young mother, with three children. I can only presume that her diet is not very good at this time. I am only guessing, from what my life was like at the same time. I thought our nutrition was adequate. NOT

Please do that for me. She might over time heal and become seizure free. It can be a goal to work towards.

 

[fitchick1961]

I have been after my daughter about her diet for long time, she eats horribly lol and doesn't take any vitamins or supplements, I've been watching my diet for long time, other day she woke up at 1:10pm, and ate 5 slices of toast with jelly and that's all. I've tried, as i'm very careful, or as she would say obsessed with my diet, lol. Were dealing as best we can, trying, taking one day at time, she's on here under her own name, jessdenn82. Thanks again for caring to respond all this is helping alot.

 

[skillefer]

5 pieces of toast?? By any chance, is there a history of diabetes in the family? Could it be that low blood sugar is triggering her seizures? It can...in which case, she needs to stay away from sugary stuff and high glycemic carbs. She should probably be eating 6 small meals everyday instead of 3.

 

[dfwtexas]

I think since your daughter is on the site, it would be best to let her handle this

 

[Rae1889]

yes jgb, her daughter is JessDenn82 at the top.
There are 2 completely differnt sides to this and it seems that neither see eye to eye. In my opinion though. I think they need to stop being a little selfish and think about actually helping Jess. She wants the help according to her thread, but is getting snide comments and feels vulnerable and like everyone has changed how they see her. She is the one having to deal with changing her life more so than anybody else in this family. so i think they need to be more understanding and less snippy to her.

 

[Billyboyboo]

Your not wrong to be scared. its tough on everybody when someone has seizures. But you must think about it from her prespective too. She's probably feeling like a terrible mother, scared of losing her independance and scared of losing her job and that could mean financial issues too. She might be scared that the people around her will change their outlook of her. She might be afraid that she isnt a good wife anymore. She is probably more afraid than anyone.

But you are her mother. she's gonna need your support as well as her husbands. You should get her to a neurologist right away. Get MRIS EEGs and Ct scans done ASAP. While epilepsy can occur in anyone at anytime, chances are that the older the person, the more likely there is a health related cause (ie; tumours, diabetes, hypoglycemic etc) Also read up on it. get yourself educated. Know when an ambulance should be called and the first aid for seizures (non convulsive and convulsive)

Also teach the children to learn to call 911, when mummy doesnt talk back to them or falls on the floor and shakes. 2 year olds are capable of learning to call too, so when the youngest starts to grasps how to use a phone, teach it right away. This way it puts everyones fears behind when she is alone with the kids. you can youtube "rescue 911-seizure" and you can find several tru life storys where a young child as young as 2 has called 911 for their parents.

Best of luck, and let her know htis site is here. she might have questions she doesnt want to ask people she knows or just wants some comfort from people who understand what she is going through

Hugs and Hugs
Rae

I agree 100%.

Billy.

 

[Jessdenn82]

to mum

I love my mum so much and also love my husband and my kids. They are my world. Me and my mother have such an unbelievable relationship. We are super close I tell her everything and is one of the reasons I am so good with my own children. I had a wonderful person to learn from. My mother was a single mom for most of my childhood and I am an only child. I have never really had any health problems and think that when I had the grand mal seizure on x mas eve it basically scared the shi* out of her.

You see, even though I am the one that had the seizure, her and my husband had to basically just sit back and watch and felt completely helpless. My mom was in tears talking to me that eve and thought I was going to die in her arms. Which I know if it was me, and one of my sons did that in front of me, I would have probably acted the same way. She was terrified and I was angry at the world that this was happening and I had no control. And too boot, that my whole entire family was here to witness this, including my mother and father in law. Which our relationship is already rocky so I was very embarrassed. Pprobably thinking all about me, at that time it was new. All this stuff was just thrown on me in a matter of moments.

You see it wasn’t that I wasn’t able to drive or not able to work, it was that it wasn’t my decision it was being taken from me. If that makes any sense at all, I would never do anything to jeopardize my kids safety. My mother is right when she posted earlier if anything ever happened to any of my children, I would never be able to live with myself.

Really, how does one deal with this, or any illness? You’re going to go through the stages of grief, anger, stress etc. Yes, I am not the one that had to sit there and watch their little girl go through this. Not to be able to do anything about it esp with her being a nurse, she felt so helpless. I can just imagine what was running through my mother’s and husbands mind at that time.

No, my diet isn’t the greatest and it probably never will be. No history of diabetes in my family. Also have checked my BP, glucose and not dehydrated. So we know that aren’t the causes. The diet is something I am going to have to work on. Hey, one thing at a time- k.

The sleeping that is so hard I am always tired. Yes I did sleep till around 1:00, but I only fell asleep like 4 hrs prior to that. Have had so much trouble sleeping lately. My mom and husband are trying their hardest to try and look from my perspective, but it is hard. I know that I have no clue how I would have reacted if it was my mom that had fallen and had the seizure, instead of me.

My stepfather has been great through all of this, I can say. Our relationship had been strained for a while due to the fact he had a stroke a few years back from a complication from dialysis, which was awful. He had to stay here at my house for a while. Yes I have to admit I was hard on him. I was like well, you know you shouldn’t be doing that. Or is that safe for you to do? Now, I truly know how he felt. It is horrible to feel like your slowly losing everything. At least I may have the seizures, but I also have a lot of periods when I am completely myself. Now I understand how hard it must have been on him. Or I should say, how hard me and my mom were on him. Cause he had to deal with the effects from the stroke daily. All the time it’s hard to see someone else’s point of view until you have something happen to you, that is on the same level

I don’t want my relationship with my mom or husband to change. Yes I do feel like I am inconveniencing them a lot, since it is always my mom and step dad that helps us out. My husband’s parents don’t help AT ALL, but that is a completely different thread all in itself

 

[Meetz1064]

Jessdenn & fitchick

WOW.

This is a hard situation that the 2 of you are finding yourselves in. And Jess, I think it's really cool that you realized how hard it was for your step-dad. That wasn't easy. :woot::woot:

Trying to find that delicate balance of what line to cross and when is not easy, to say the very least. Mom (Fitchick) is desperately wanting to protect her child (of course), and JessDenn is an adult with kids of her own, who still wants her independence.

May I make some suggestions?

First, let's start keeping an E journal. Jess, it SHOULD be your responsibility, but you may not be able to remember to write things in it all the time, so have others jot in it, too. (Use a calendar, notebook, whatever is easiest for you). You can make the journal as detailed as you want it, there are MANY different triggers that can possibly be identified. I can post a great list for you if you want. Why not start out with listing sleeping patterns, and seizure frequencies? And write down how you feel each day....and if you seize....then have someone write it down for you---how long what happened, etc.

Second, be willing to ask people to drive you around UNTIL YOU'VE BEEN STABILIZED. YUP, it IS annoying as all bejeezers. But at least you have people willing to help you. And trust me, I DO TOTALLY AGREE that not driving can seriously put a crimp in your lifestyle...and not being able to feel free. I've been there, and done that a few times before. It sucks a hill o'beans.

Third, keep on top of your doctors, and MAKE SURE THEY ALL COMMUNICATE WITH EACH OTHER. Doctors are NOTORIOUS for not doing so.

Finally, have a good sit down talk with your mom, step-dad, hubby and in-laws. Figure out a reasonable plan of action for the days that one of them isn't reachable to help you. Calling 911 is not a bad thing...and sometimes is the right thing for that moment in time, even though you may consider it embarrassing (trust me, I find it embarrassing.....being shoved in an ambulance in front of 500 people is NOT MY idea of fun).

PLEASE don't take offense to anything I've just said. Keep in mind I've had E for 45 years now, and raised 3 kids with it, one of them a special needs kid. Yes, they've called the ambulance for me (that was not a particularly fun day). And now, one of my kids has graduated college, and the other 2 are working their way through it. You WILL make it, I promise. Just take it a step at a time, OK?

I now substitute teach, write, and a few other things, so there IS hope for you to have a normal life.....and I have four types of E, and I take four meds for it.

Take a deep breath, and holler if you need anything. We'll all be here for ya, I promise.

Take care,

Meetz
:rock:

 

[Jessdenn82]

hey

Thanks Meetz,
For all your suggestions I have started keeping a journal but still not all the way sure what to include in it but wanted to start having a timeline for when I do go to the neurologist rather than just ramble and go all over the place with the timeline which can be very confusing to follow lol and ya finding my step dads point of view only came recently I can assure you me and my mom were really hard on him and both of us being nurses couldn’t understand why the heck he just wouldn’t listen and we kept him captive in my house while he recovered from the stroke cause it was easier on my mom and my house was more accessible for wheelchair/ cane etc than his own house was and he lost a lot more of his independence than any of us on here have and it has taken him years to get back what he lost I can remember telling him well at least you can do this and that and it could be worse but until your put in that type of situation you never fully understand and our relationship took a big hit after he had his stoke cause we used to be very close and then he wasn’t the same person he had been prior but we have gotten back a lot since then it’s not exactly the same but we have both adapted and he has been my biggest supporter and even tells my mom well you guys need to see her point of view and even though what I am going through is nothing like what he had to deal with I have never heard well now you know what I meant or I told you so I love him so much and am so glad we have gotten our relationship back and yes I am an adult and am married and have 3 boys of my own but me and my mom have always been super close so it does help when I go to the dr. to have her there esp since I don’t remember the full blown seizures when they occur and also my husband isn’t the best with doctors in his words he hates the whole medical profession just lately have been finding stuff that the doctors think may be auras such as glitter falling from the sky, feelings of dejavu, vision distorted and this is before I get increasingly dizzy then I get very short of breath as if I just ran a marathon and my heart rate gets very high the doctor said today that the shortness of breath and heart rate is my body reacting to something and he feels if I wasn’t on the keppra may be having more full blown seizures and not to ignore any of this my body is trying to tell me something I just need to figure out what it is and if I seize is a hard thing see I am alone most of the time during the day with my 21 month old until my older two get home from school and he isn’t capable of telling me if I had one or not I just remember these weird feelings I described above but don’t know if they actually trigger a seize unless someone is here and I am asking people around me to drive me around and yes it is a pain in the a** but I know it is best and do agree with not driving and can avoid it as for I have an awesome support system my husband, mum and step dad also couple of the parents that have to drive their kids to school too spoke with them and they have been picking up kids and bringing them home due to situation until it is warm enough kids could walk to school luckily finding good dr and keeping on them has been not too bad as of now being both of us are nurses we know who to see and who not to see so that’s at least a plus and I agree with calling 911 when it needs to be called already sat down with mum, stepdad, hubby and kids however my husband’s parents don’t help they don’t even babysit on a good day before all this happened which makes my mom very mad that it is always her and my step dad but my youngest son won’t even stay with them but that is there fault for not coming around much and don’t think that will ever change but it makes it very hard on my mom and step dad cause other than my husband they can’t get any help from the in-laws  plus the older two boys fight every time I even mention they might have to go over there it’s a bad situation all together I don’t take offence to much and am open to any ideas to make this easier to deal with for everyone involved and yes I am hoping that the dr. can get me under control for I am an ER nurse and love my job and can’t wait to get back to helping people but I know I can’t go back until it is safe would never put any of my patients in danger that is the reason I took leave from work
:twocents::woot:

 

[RobinN]

Jessdenn - I am really having difficulty reading this. I know it makes sense to you, but I can't get any clarity from it when the sentences are all running on. You can edit it to help us out - if you're interested.

I am not wanting perfection in spelling, punctuation... just help with breaking up your thoughts. Otherwise I misinterpret what you are saying.