My adult daughter just started having seizures

[fitchick1961]

My 27 year old daughter had a tonic clonic seizure on christmas eve. She has 3 kids ages 18mos. 7, 10, appparently she's been having these type of episodes though not as severe over the last 6mos. She has severe headaches and chronic back pain and was on Ultram. She was started on Keppra last week, and had another smaller seizure yesterday, while only my 10y/o grandson was here, I came over, but in the post-ictal phase, she took my 18mos old grandson into the bathroom to lay him down for nap. My son in law is scared to death for her to be alone with him all day, he's a nervous wreck, I work, she is still driving occas. even though we told her not too. She hasn't seen a neurologist yet, are we worrying for nothing, I'm afraid if she has an absence seizure or a tonic clonic seizure while driving, or alone with my grandson, she is mad, depressed, and angry at everything, she had to take a medical leave unpaid from work, she's an ER nurse, I'm a nurse too. Just don't know what to do, is it normal during post ictal periods to lose touch with reality to that extent. And are wrong to be scared about these things.
Treatments

 

[dfwtexas]

I have both simple and complex partials. During my complex partials, I am walking, talking, etc and my brain trys to operate on autopilot, but I get things confused. I wonder is your daughter was actually having a partial when she put her son down for a nap in the bathroom. I have done similar things during my post complex seizures. I use to work in church nursery and decided to quit as I would never want to put any of "my kids" at risk. I am 49 and have been having seizures for almost 2 years. My children are grown so I don't have to worry about the child care issues, but there are a lot of younger women on here that have that concern. I think the best answer is to get your daughter's seizures under control. That is easier said than done for some...I am still struggling with getting my under control. I am on Keppra and had have my level adjusted and my seizures are a lot better, but not completely controlled.
jenn

 

[Rae1889]

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

 

[Nakamova]

Welcome fitchick!

I second and third the opinions above. It is normal to be active but "out of it" after a seizure. I've gotten up walked around, and had conversations that appeared normal to those around me -- and then not remembered a thing, since my brain was still in the waking up period.

Was it your daughter's GP who prescribed the Keppra? Is there any way you can get the doc to talk to her and emphasize the importance of playing it safe right now, especially while trying to evaluate a new medication and achieve seizure control. I know it can be tough to lose the things that make us feel independent -- like driving and work -- right when we are feeling most scared and vulnerable because of the seizures. Be gentle with your daughter, especially because, as you say, her husband is freaking out.

Best,
Nakamova

 

[fitchick1961]

thanks for the responses, she was very angry that i called 911 on christmas eve, they checked her out and left, she had a negative CT scan so far, and is going to make a neurologist appt. today, but they need my son in laws income, it just is a very hard situation, she does not want the kids to call 911, she told them that and I told them and her husband if she seizes when you're there call 911. The problem is my daughter and I have always been very close, to the point she wants me around and to go to her appt.s rather than her husband, however my husband is on dialysis and had a stroke 2yrs ago, so I just don't know what to do. Her and her 10 y/o son were having a fight yesterday, because he's afraid of her being alone with the baby all day. She has no warning or aura before her seizures that we know of.

 

[fitchick1961]

No I took her to the ER at th insistance of her GP last week, after she had an episode where she works, spaced out she called it. They said she just wasn't there, so the did a CT with and without contrast. And started her on Keppra 500mg 2 times/day, however she also has a problem with the way her liver metabolizes certain meds, she gets drug induced hepatitis from just too much Tylenol, were going to see her GP this thursday. I'm trying very hard to help and be supportive, I'm just soo tired and stressed myself.

 

[Nakamova]

Hang in there until Thursday, seeing the GP may help a lot. Keppra can cause mood changes and anger (called "Kepprage") so it's possible that it's making some things worse for your daughter. There are other meds, ones that don't get processed through the liver, so that may be the way to go. If the GP isn't familiar with all the treatment options, it's very important to see a neurologist right away who can discuss them with you and your daughter..

Is there someone else -- a friend or other relative whom you could call upon to help? Sometimes it's easier if it's NOT someone you're close to, the emotional stuff can get in the way.

 

[Cint]

Hi Fitchick,

I started having CP seizures that gradually turned to TC seizures when I was 22 years old and was seriously burned while coming out of a TC seizure. I had no history of tumors, hypoglycemia (although the dr. before the accident tried to say that is what the "spells" where from), or diabetes at the time. And, yes, I often would lose touch with reality.... hearing voices, seeing others that weren't there, due to the TC seizures. No, I'm not a schizo. So, no, you're not wrong to be scared about these issues. I have two grown children now who witnessed their mother go through numerous seizures, thinking I was going to die, but learned when to and not to call 911. My daughter did call 911 when she was 5 years old because that was the 1st time she witnessed a bad TC seizure. Their dad is a pilot and was gone a good deal of the time, so I could not drive and the kids, unfortunately at times, had to take care of their mother since we had no relatives living close by at the time.

And please, persuade your daughter NOT to drive if she is experiencing TC seizures. Accidents can and do happen. After years of no driving, I finally got my DL back. One evening out of the blue, another CP seizure hit while I was behind the wheel. Thank god, only minor dent in the car and no injuries. I'm sooo glad I did not take that risk when my children were young!

You're daughter is probably feeling quite worthless right now, due to this awful disorder. I know I did when my children were still living at home and I could not take proper care of them like other mothers. She is going to need all the emotional support now, and if family lives close by, please offer her as much support as you can.

 

[skillefer]

Hi fitchick! Welcome to CWE. Sorry to hear about your daughter. Yes, you guys have reason to be concerned. You said your daughter is angry alot and depressed. Keppra is notorious for causing severe mood swings. It's called "kepprage". Often vit. B6 can help. But definitely report it to the doc. As for the driving and leaving her alone with the kids....I'd definitely say no to doing either. Here's why....1) How would she feel if she accidently killed her children or anyone else by driving? Seizures can occur while driving. Now, as others will point out, driving is a personal decision. I have tonic clonics, and yes I drive. It is a risk I take. Luckily, my meds pretty much control my seizures. Your daughters are not under control.
2) The fact that she tried to lay one of the kids down to nap in the bathroom is very dangerous. What if she had tried to lay them down for a nap in a full tub? What if she had a seizure and during the seizure thought she was fixing dinner and accidently put her child in the oven? It is a very real risk. There are posts all over this forum of people doing things like putting milk in the cupboard or shoes in the oven and similar things.
Your 10 yr. is worried for his mom and his siblings. How kids react to seizures, whether with anxiety, fear, etc. so please try to remember to stay calm when helping your daughter after a seizure. My younger brother saw me have a seizure once...and how my mom reacted (very worried). After that, he didn't want to be left alone with me in case I died. *sigh* Honestly, he should be calling 911 or going to get another adult. So try reaching a compromise with mom where he's allowed to go and get help. If that is not feasible...for example, living far from neighbors, he needs to be allowed to call you or another adult, if not 911. Or told to call you and then 911. You might want to consider teaching him how to time the seizures and how to help mom if she has one.

Also, you said the youngest is 18mos old and the first seizure was 6 mos ago? could it be hormone related?? Hormone fluctuations can trigger seizures. Women may find themselves more likely to seize around their periods. so try and think back about when the seizures have occured. If you think this may be the case, tell the doc. It could be that with the help of a hormone cream, she could get back control.

 

[fitchick1961]

I love her very much and her hubby, she did drive about 3mos ago, and did during one of her post ictal phases, started seizing while on phone, she fell during that one my eldest grandson said, at least she didn't take kids with her, started out in one place, ended up somewhere else, maybe had an absence seizure while driving and hit a guard rail, thank god no one hurt and she got home ok. My daughter and I are very close, I love her to death, it's just a little hard right now, lol. have to laugh, so you don't cry.

 

[fitchick1961]

yes last nite, he called me and I was on my way home, went straight over there, I have a pretty flexible job,thank god, yes that is the type of thing we are worried about, i asked her not to lock the bathroom door, when taking a bath, and not to take one alone, she feels like a baby, I don't blame her. I'm a nurse but have never witnessed a full blown tonic-clonic ever, and was very scared, when whe went limp and her face and lips were blue, I had them call 911, at least now I no what to expect, and won't be so scared, her kids especially the oldest, was like, don't worrry she'll be herself again soon, that how we realized this has been going on for months.

 

[skillefer]

Totally understand. Let her know that having seizures will not make her a bad mom. I have a 6 month old that I love dearly and take care of. Getting control of the seizures will make it easier and safer for her to continue being a good mom. That should be the perfect incentive.

 

[Cint]

her kids especially the oldest, was like, don't worrry she'll be herself again soon, that how we realized this has been going on for months.

That is how my oldest daughter learned to handle the situation. She handled the situation much better than the rest of the family, even her father, since he was gone a good deal of the time.

 

[Nakamova]

If you are present while you're daughter has a tonic-clonic, it's not always necessary to call 911. While it looks scary, and the lips turn blue (because of oxygen being sent to protect to the brain), that's actually "normal" during a t-c. If your daughter's seizure doesn't continue beyond 5 minutes, and if she has no serious injury from it, then the ER/ambulance may not be necessary. Of course if there's any doubt at all, absolutely call 911, and for the kids it should be an absolute as well.

 

[dfwtexas]

I have some liver issues too, that is why I take Keppra. Most seizure meds metabolizes via the liver, but Keppra metablizes via kidneys. I started at 500 mg twice a day and now am up to 1250 mg twice a day. I think Keppra is a good drug with relatively few side effects for me

 

[skillefer]

I understand the feeling of being treated like a baby. My hubby was very protective. Especially when I was pregnant. And all I wanted was to be treated like a "normal" person. The thing that I had to remember is that everyone was being protective because they love me...and that just like someone with asthma or diabetes has to take precautions..so do I. So that's how I chose to think of E...like diabetes or asthma. Something to be dealt with.

 

[foreverdark]

Rae1889 when you say "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." That is exactly how I felt, only in the sense of a father.

I think the daughter here is terrified, pissed off (excuse the word, but it works best) and embarresed. I think MOST people here felt all and/or some of these when they were first diagnosed. Patience AND persistence is what I think is in order here. Patience with the feelings she is experiencing and persistence with the saftey issues.

Make sure she knows that she is still loved and no one thinks any less of her!!

 

[Rae1889]

Well, she is right to some extend. an ambulance does not need to be called everytime. only when the seizure last five minutes or longer, or she has sustained an injury or another seizure starts shortly after. There is not much a paramedic or the ER can do once the seizure has stopped. she'll just need to rest, thats all. get fluids back into her system etc.

Also, if she won't teach the kids to call 911, you HAVE to. She could get seriouzly injured or worse if she is alone with the kids. If you need to scare her into wanting to take better care of herself and become more responsible when it comes to communicating her seizures wiht her husband and children, then look up SUDEP. it does happen, although rare *you don't have to tell her that its rare* most of the time, these deaths happen when the person is home alone and there is nobody there to intervene. You have to make her realize that if she has one she could endanger the whole family, not just herself. the kids could be left without their mother. That should make her change her mind. give her the example: your cook, you have a seizure, whatever your cooking catches fire and nobody else is home. Now hwat?

You need to make her husband more aware of what is going on too. help him out. train him on what to do if your daughter won't listen. and stand up for yourself too. She is 27 years old, she is capable of going to the doctors alone. she can catch a bus there and back so she doesnt drive. and you can even, next time she makes you go. Ask the neuro if there is anything you can do to immediately stop the seizures. they can sometimes prescribe some meds in several forms to stop the seizure once it starts.

does she have anything else going on health wise that you know of. head injuries from the past. etc

 

[Rae1889]

yes I think your right foreverdark. she needs to swallow her pride and get over herself. this is her health and her family's health she is playing with.

 

[tam bam]

Rae is very right and said it best. :agree:

tam bam