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pseudo-seizures and having young children
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Naya89 posted:
My husband has recently been diagnosed with having pseudo-seizures. They are usually triggered when he has an anxiety attack or when he is very stressed. He is also conscious during the whole thing and can carry out full conversations with you while having one. Seizure meds don't help him and anti-depressants don't help the anxiety issue either. He was informed that if he can get his medical marijuana card he would hopefully see results in the anxiety and seizures. He is concerned that there might be more to the seizure disorder but cant quite figure out what. I am also concerned that these might eventually turn into full blown seizures some day. I do thankfully have medical training and i know what to do if he does but we have 2 young boys and I don't know how to tell them that their daddy is having a seizure and he'll be okay. Any tips on how to help him figure out whats really going on? We have seen numerous Dr's and shrinks and we keep getting told the same thing. Also how do you explain seizures to a 5 and 2 year old?
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dancer86442 responded:
Good Morning Naya,

Welcome to our Epilepsy Community. I am glad you & Hubby want to learn more. Education about Seizure Disorders/PNES is Very Important!

First, IF Hubby has PNES then Seizure Meds will Not work for him! As for anti-depressants, like our seizure meds, it is 'trial & error' to find what will work best for your Hubby. And yes, Medical Marijuana is Highly Recommended by some, to help control stress/anxiety/seizure activity. Usually, these types of Seizures do Not develop into Epilepsy, though. Unless, he is genetically inclined to have Epilepsy. Suggestion: Visit National Seizure Disorders Foundation & Learn more about PNES. Tonya & members of the Group have the Best Insight/Info in my Opinion. BTW: She has a Group on Facebook, also. Search if you are a member of Facebook. Search & Friend Jeanne Phelps (me) if you need Help joining the group.

OK, about how to tell the Kids, that is an Easy question. Amazon.com has a list of Epilepsy/seizure disorder books for All ages! Suggestion: B4 purchasing, Note Authors/titles of interest & visit your local Library. Talk to the Research Librarian about availability of books. The Research Librarian will contact other Libraries or Used book stores to locate any books. Sock Hand Puppets are another Great way of showing kids that age what to note & how to respond.

Tips: Start a Daily Journal! More Info under our Helpful Tips on the rite. A Daily Journal Can help You, Hubby & DRS determine if there is More to what the problem is!

It's Good to hear that you know what to do during his Episodes. So Many People are Clueless about Proper Seizure First Aide &/or seizure disorders.

Will you Please keep us posted on his Progress? The Info you provide us may help another who has Similar Issues. If you have more Questions or just need Support or a need to Vent, know we are here for you! Hugs!

Love Candi
 
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saxofone1 replied to dancer86442's response:
Hi Naya,

Welcome to the family.

Kids are wonderful. Smarter than we think. And most likely, not afraid of what we expect them to be. Talk with them early and they have less to fear.

I found that kids understand many things if we put it in language they understand. I started working with kids(k-3) back in the 80s. I then used the phases "lightning storm iin the brain" or ''brain blackout". Later when computers became a daily thing, I explained my ep as a "brain overload".
The kids definitely had questions. They listened and learned that they had nothing to be afraid of. They soon became my support and were on the lookout for any unusual actions I made.

Think about talking with the oldest, and possibly she can be your support with the younger one.

I too have seen many books for kids on Amazon.

Give your kids a chance to understand.

Wishing you and your family a good day. Happy Father's Day to your husband.

angie
 
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Naya89 replied to dancer86442's response:
Thank you Candi the support is a great thing to have...... Lately he has been having the seizures in his sleep and that has started to worry me. He wakes up very sore and i feel helpless at times because i tend to sleep through them. We are working on getting him his medical marijuana card but have had no luck yet. I will keep you posted as I know more.

The last DR that he spoke to said that he need to keep a journal as well. Only problem is, is that his memory isn't all that great and he tends to forget something I tell him or ask him to do 5 minutes after i say it.

I will look into the books and i hope they will help. I know my oldest will have an easier time understanding but my little guy has seen his daddy seizing and because his daddy is usually sitting somewhere that he can sit on him he thinks daddy is there to play. Thankfully my husbands seizures aren't violent.

I'm in need of venting a lot and it's good to know that I have others I can vent to besides my husband because I know it stresses him out and that's not a good idea.
 
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Naya89 replied to saxofone1's response:
Both my lil guys are too smart for their own good sometimes. But the youngest of the 2 doesn't comprehend fully whats going on with his daddy and that's where it gets difficult. My oldest is a little bit easier to talk to because he understands more. He can comprehend that daddy isn't ok and that daddy needs help and can come get me if i'm not in the room when one hits.It's more a matter of trying to explain how they happen and why... and I think the ways you stated will work I know my boys are smart and they will understand and i keep telling myself that. I;m just, I guess, worried that they're going to get scared because of it.

My husband says thank you for the advice and thank you for wishing him a happy fathers day!!
 
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dancer86442 replied to Naya89's response:
Naya,

Has your Hubby been to see an Epileptologist? (Seizure Specialist). These DRS specialize in Seizure Disorders & have 2 extra yrs of training, specifically about seizure disorders. You may have to travel a bit further to see one, Depending on the size of city you live in. I have found that Most Neuros specialize in other Neurological problems, like Sleep Disorders & are not always up to speed about Seizure Disorders. Has he done a Portable 24 to 72 hr EEG? Has he ever been admitted to an Epilepsy Monitoring Unit for a Video EEG? Both of these tests are More likely to pick up on any seizure activity. After 30 yrs of Normal EEG's my New DR did a portable & yes, it showed seizure activity. But, it wasn't what I expected. No gran mals or other common Types of seizures were were detected. Possibly becuz Meds I am on have gran mals AKA tonic-clonic, under control. These were seizures I had never heard of B4. A Rare form Known as Wavy Line Syndrome ( I forget what other term is used. ) that is mainly detected in children. Silent seizures (no physical activity) in my sleep. BTW: the majority of my seizures were gran mals while sleeping.

I understand your concerns about his Nite time seizures. Because it is Possible to have Epilepsy & PNES. Which is why I asked about the other EEG tests. Can you explain to me What you Have witnessed? Have you done enough 'homework' to determine what Type of seizure he is having?Also, do you have a camcorder or cell phone that records? Filming his seizure activity would be a great Idea & would also be useful to DRS.

Since Hubby has Memory Issues, a Journal is, mainly, going to be up to you. But, he needs to get into a Habit of writing down/recording stressful moments or other Info as they occur. After all, you can't be w/ him 24/7. BTW: I've been told there are apps on cell phones that can Help. Still, As his Caretaker, you Are his best Advocate. So any Input you have Is Very important, too.

Angie's ways of describing a seizure, is actually the best. I had a hard time understanding what seizures were. Even after I joined this Community. Then someone posted a Link to an Australian Site & they used the description: 'lightning storm in the brain' & it all made Sense. I have read the same on other sites since then. Also, efa.org,, at one time, used Hand Puppets made from socks, to help kids at schools understand what occurred & what to do. Maybe that will help w/ your 2 yr old. I have known 2-3 yr olds who were taught to recognize seizures & call 911. It will take Time & Patience. But, if the Boys are as Smart as you say, it won't take Long.

Tell Hubby we/ I said Thank You for Listening to us. Here is Hoping he Does have a Very Happy Fathers' Day. If he has any questions, let us know.

Now, Bit of Advice for You: Avoid Caretaker Burnout! Designate a Day for You to do something you Enjoy by Yourself! Once a week or once a mth! Easier said than Done, I know! But, you deserve Time Out to just be alone. Even if it's just for an hr or 2. Your Health, Mental & Physical, has Needs, also. Burnout is Real. You want to be able to continue taking the Best care of Hubby & Kids, So, Take/Make Time!

Love Candi
 
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saxofone1 replied to Naya89's response:
Hi Naya,

Give your kids a chance to understand. Time and patience with them will also help lighten the stress on you. Sounds like the older one might be the one to help you explain to the other. Think about a toy your kids might have. Do you have any of those Christmas ornamenents that when you shake them the snow falls and eventually settles? Having a visual picture has often helped the kids I've worked with. You know the ones I'm talking about? Oh, what's the name of those?

I don't think your kids will be afraid if you try to explain. Fear will come if they have no understanding of what is happening. Let them know that this is not their fault.

You say the youngest one thinks that your husband is playing when a seizure happens? Ask him to let you know when "daddy is playing that game". Help him recognize that you want to be a part of it too.

Keep venting with us. We are here for you and the family.

Hugs,
angie

Journals are important in helping. You can log time of seizures/auras, activity, foods eaten, etc. These can be some very important points that the doc can surely use. I know it is hard to start one but it will become second nature.
 
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Naya89 replied to dancer86442's response:
we have seen so many drs that i have lost count of all the drs we have gone to see. no we havent done the 24-72 hr EEG walking test and he had an EEG done a couple years ago and nothing came up on it which is weird. we are working on getting him back on insurance so that we can go see a specialist to really get this whole thing under control and really figure out whats going on.

the 2 year old is a little more difficult then the 5 year old when it comes to teaching them things like what to do when daddy has a seizure my 2 year old just trys to cuddle with his daddy and thats his way of telling him you'll be ok daddy i love you. my oldest has started to learn the triggers and the signs of a seizure coming on and if i'm not around he can let me know, which is very helpful.

his fathers day was as good as it could be without being with his family. he was at his grandmas for not only fathers day but our one year anniversary. we had a month apart and that made a big difference with the seizures they increased while he was gone but once he came back they decreased dramatically. he had one on the 4th of july and had one last night.

i try to take as much time as possible for myself but it's not always easy with the boys. the most time i really get to myself is when i take a shower or i'm asleep unless a friend of mine wants to hang out for a couple hours.
 
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Naya89 replied to saxofone1's response:
my oldest understands but the lil one is still not the best talker but i think he understands because usually he hugs his daddy and i think that's his way of saying "it's ok daddy i love you"

i have been trying to keep a journal but when he has them in hus sleep it makes it difficult for me cuz i'm asleep too and he doesn't have violent seizures so they don't wake me up. and he cant always get the words to say something to me when they happen.
 
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dancer86442 replied to Naya89's response:
It will take Time & Patience. But, you seem to be holding up really good so far. As for 'normal' EEG. As far as I am concerned (& others' will agree w/ me) they are Not the best diagnostic tool. Another friend of mine has a very informative page you may want to chek out. Her articles are really great. epilepsytalk.com is posted in our Tips &/or Resources. No need to join to read her articles. But, if you have questions or comments for her, you will need to join. When you reach the bottom of a page just clik for next page to read more. She has a Variety of Epilepsy related Topics.

You don't have to note every seizure he has. Just those you do witness. If you have a cell phone, keep it handy at All times, Use your Cell phone Journal App so you needn't get up to write everything down.

Your 2 yr old cuddling w/ Dad could actually be a Good Thing. My brother-in-law used to 'spoon' w/ my sister after her seizures. It can Help de-stress him. If your son was screaming & hollering, that would be different. Your 5 yr old sounds like my daughter. She witnessed my First seizure when she was 5. I was a single Mom & she was My caretaker for several mths after I got out of the AF. Children really are Smarter & more Understanding then most ppl give them credit for. Give that Boy a Big Hug from Me! My Daughter tells me Now, that what she went thru w/ me & her Aunt, Really Did make her a Stronger Person. After hearing how She dealt w/ her seizure diagnosis & Drs, I believe her.

Wish I was your Neighbor. I know I would be there for you. But, I Am Here for you! Hugs!


Love Candi


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