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    Old 04-13-2004, 04:27 AM   #1
    gagcas
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    Question he has started wetting the bed, arew these part of siezures?

    hi everyone, just a quick question here. gage has started wetting the bed. this is not normal for him and he is only 5. he hasnt done it in a long time. now all of a sudden he has done it once a week for the last 3 weeks. last night being the last time. and it is pretty wet so i am assuming that he is doing it just before he gets up. could these be siezures or not. its so hard to tell with me not being in there to see. i dont know till he comes down in the morning. thanks ahead of time for any help on this. catch you all later on.
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    Old 04-13-2004, 11:06 AM   #2
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    Re: he has started wetting the bed, arew these part of siezures?

    Hi Jennifer,

    I posted in my thread that you responded to, but i'll post here as well. Since your son has epilepsy, I believe Yes...it is a result from a seizure. I only get seizures while sleeping and usually don't know that i have unless I wake up in the morning with a wet bed, or a horrible headache, or someone has seen me.

    I wet the bed as a result of a simple partial seizure. It started in my teen years so i definitely knew that something was up when it started. However, i do not know what other symptoms I have because no one has ever seen me have that seizure and actually wet the bed. But i'm assuming that it is a quiet seizure since no one in my house ever wakes up to it.

    Some of my other night seizures that people have seen have viewed me making a strange clicking noise with my mouth, have my eyes open (starring into space), sitting up, and picking at my clothing.

    wish your family well
    bye

     
    Old 04-13-2004, 01:25 PM   #3
    tkdmom96
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    Re: he has started wetting the bed, arew these part of siezures?

    Hi Jennifer,

    Thanks for your sweet comments about Katie, when you have things on your horizon...

    I would agree that Gage may be having seizures in his sleep and the results being a wet bed. Katie VERY seldom has ever had a wet bed since being potty trained at the age of 2, so if there is ever a wet bed, I know something happened during the night with her seizure activity.

    I have told Katie about Gage and Jake and she has taken a great interest in their stories on the boards. I usually print them so she doesn't read some of the other stuff that may upset her. One step at a time right now.

    I would contact your Neuro and fill them in on this. I wish you the best with the "D" thing, I'm sure it isn't easy. Could Gage be picking up on anything between the two of you? Even overhearing a phone call can be disturbing to a little one. They are more tuned in than we think.

    Good luck to you my dear, and we are praying for Gage and Jake...

    Vicki
    mom of Katie, the daughter I admire more than words can express

     
    Old 04-13-2004, 01:29 PM   #4
    tkdmom96
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    Re: he has started wetting the bed, arew these part of siezures?

    Hi Wokstar,

    You described some of the seizure actions that you have...do you also have Complex Partial? Description is the same as our Katie's (16 in July) seizures. Are you in highschool as well? Take care...

    Vicki
    mom of Katie, the daughter I admire more than words can express

     
    Old 04-14-2004, 11:00 AM   #5
    wokstar
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    Re: he has started wetting the bed, arew these part of siezures?

    Quote:
    Originally Posted by tkdmom96
    Hi Wokstar,

    You described some of the seizure actions that you have...do you also have Complex Partial? Description is the same as our Katie's (16 in July) seizures. Are you in highschool as well? Take care...

    Vicki
    mom of Katie, the daughter I admire more than words can express
    Hi Vicki

    Yes, the seizure I was describing is a complex partial seizure get...interesting to know that Katie deals with these as well. (I also do get Generalized Tonic-Clonic) When was Katie first diagnosed with epilepsy? No, I am not in Highschool anymore, I am now 22 years old (and also female)

    But we first noticed my seizures when I was 15 years old......so I had to deal with the news while in my teen years. We went through Tegretol (but an allergy to that stopped me), then Epival, now I'm on Lamictal. I told my friends about it highschool and most of them were kinda scared that i would have a seizure around them..(haha,it might have worried them more than me). But they grew comfortable with the idea when I told them how to handle a seizure and were supportive. We notified my teachers at school (though most of them forgot)..but I was fortunate and did not experience a seizure at school. Only a couple when I was a counsellor at a sleep away summer camp.

    How nice it is that you are such a supporting mom and take the time/interest to post and educate yourself (plus others) about epilpesy. I'm sure it helps Katie work through having epilpesy and makes it easier for me. When I was a teenager i sometims felt like it was my fault for my seizures (as my parents would drill me about....well you shouldn't stay up to late! did you take your medication? What were you doing last night!? I told you to sleep more! Why do you take so many naps!? Oh...you do that because of your medication side effects..) I found that quite trying at times....especially when they held me back from things and did not support my decision to go away for university (because I have epilepsy).

    But having epilepsy helps me because I can be supportive to others with it....and i do my best to educate everyone I meet about it as well.

    I wish you and Katie well...Good luck

     
    Old 04-14-2004, 02:32 PM   #6
    tkdmom96
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    Re: he has started wetting the bed, arew these part of siezures?

    Are you by chance from Canada? I see you mention going to university and that seems to be a Canadian saying. Just curious, and good for you deciding to go away. You will need to learn to cope in many areas of your life with E. I applaud your courage, especially only a few years after being diagnosed.

    Katie was diagnosed at 9 months. She presented with a febrile seizure (fever with ear infection) that generalized and was given valium to stop it. Phenobarb was introduced also during our 4 day stay. That is what she left the hospital on and after 3 days of watching Katie stumble around and be a cranky little thing, I said this is enough. She was then switched onto Tegretol, which she took for 12 years. She was not completely seizure free, but did well enough on it. Tegretol stopped working around the age of 13 when Katie started her menstrual cycle. It has been a rollercoaster since. That is how I started my research on surgical options.

    We have since found, through her MRIs that she has Mesial Temporal Sclerosis, which is a shrinking of the left hippocampus. According to our Epi, Katie was born with this and when the febrile seizure came it irritated the hippocampus and that is where her seizure focus has been all these years. Every seizure is almost exactly the same. To date, that we know of, she has had 3 grand mals. Ages 9 months, last August (15 years) and just last week in the monitoring unit. It was hard for me to watch. My husband saw the one last August in the monitoring unit, it was on his 12 hour shift with Katie. The one he saw was 59 seconds and the one I had with Katie last week was 2+ minutes. It reminded me of the one when I took her to ER at 9 months. I don't care to see those. I cried during the whole thing (once the CP turned to Grand Mal).

    Katie takes Keppra 3000mg per day and 400mg of Lamictal per day. After the surgery we hope to get rid of the Keppra all together. Katie has done ok, but not completely seizure free. 5-8 CPs per month and about 30-50 SPs per month. After typing that, it sounds awful ha?

    How many SPs do you have per month? Do you seem to have more problems around your cycle?

    Take care, and thanks for your responses...

    Vicki
    mom of Katie, the daughter I admire more than words can express

    Last edited by tkdmom96; 04-14-2004 at 02:33 PM.

     
    Old 04-16-2004, 04:48 AM   #7
    gagcas
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    Unhappy Re: he has started wetting the bed, arew these part of siezures?

    well last night makes three times this week gage has wet the bed. im am at my wits end. i am really not sure what to make of all this. i am calling the dr. office today, but with it being a clinic the neuro is only there on wednesdays a couple times a month. im not sure what they could do since our appt. for the 24 hour study in pittsburgh is only a couple weeks away. bums me out a little. he is still on the zarontin two tsp. twice a day. and i think he is adjusted to it. its really wierd. it seems like once the little night spells stopped the bed wetting started. i wish i could see what going on while he sleeps. has anyone ever vidio taped thier kids while they are sleeping to see if they have them in there sleep. i wonder if that would help me to see. thanks for letting me vent ahead of time.
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    jennifer

     
    Old 04-16-2004, 12:26 PM   #8
    tkdmom96
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    Re: he has started wetting the bed, arew these part of siezures?

    Hi Jennifer,

    I know this may sound weird, but I thought about taping Katie for years, but chickened out. I guess it was one of those unknowns that I preferred to stay unknown. Our Neuro and Epi said that we would be able to tell if Katie was having seizures during her sleep. That is one question I did not ask after both VEEG studies Katie had (one was 6 days and the other 36 hours with the strips), I just really didn't want to know if she was or not.

    Hang in there ...is Gages sleep study only going to be 24 hours? Do they feel that is long enough? Will it be video taped as well?

    Vicki
    mom of Katie, the daughter I admire moe than words can express

     
    Old 04-16-2004, 03:07 PM   #9
    gagcas
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    Thumbs down Re: he has started wetting the bed, are these part of siezures?

    hi all,

    well the doctor finally called back. she said to up his dose from 2 tsp. twice a day, to 2 1/2 tsp. twice a day and i am to call back in a week to give her an update. i thought she would have brought him in but since it wasnt his neuro i guess not.

    i would probably tape him at night if i could get my hands on a recorder. just so people would quite telling me he is drinking to much before bed. for some reason it is easier to blame it on something else than to come to realize that he has epilepsy and this is could be from just the seizures. i would just like it to be all over i guess and i realize i am in for a long haul. since the meds dont seem to be working. but i cant see them changing it till we get done with pittsburgh. as far as i know they are taping it and it is only a 24 hour...well actually 23. something to do with the insurance. i am really hoping he gopes into one of his tempers. they seem to hit in the late morning and late evening. they could start over some as trivial as i pulling the wrong shirt out for him to wear. even after i told him to go and pick one out on his own.....that one could be a temper starter too . yesterday we were in the grocery store, of all places. he didnt want to walk but he didnt want to ride in the cart either. that was a nice trip to the store let me tell you. i wonder if the anger is a trigger for the siezures. once the temper get there the siezure kicks in and makes it go longer. almost all teh time he will fall asleep from crying so much.

    i am curious to see if maybe i can get him to go into one just so i could see what it does on the EEG tapes at that time. it doesnt take all that much anymore. maybe it would be a longer stay if we knew what we were looking at, but the neuro doesnt even know at this point what type he has. well thanks for letting me vent. this seems to be one of those letters. goodness i havnt had one of those in a while. ta ta for now.
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    jennifer

     
    Old 04-16-2004, 09:09 PM   #10
    Phoebe
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    Re: he has started wetting the bed, arew these part of siezures?

    I can't believe I haven't posted on this thread. I looked back and thought for sure I would find my name, but it isn't there so here goes. I also had a very high fever as an infant and convulsed due to it. The bed wetting for me was noticed only after being potty trained. That continued nightly, and my parents tried things like honey at night before bed, some really sweet clear liquid of some sort, taking me to the bathroom during my sleep, etc. I haven't the foggiest idea where they got those "remedies" from, byt they didn't work needless to say. There was a lot of denial on my parents part, mainly my father, a doc. I was accused of being jealous of my brother etc, and there was some physical abuse too. That got worse as i got older. The bedwetting went on every night, and I started having Simple Partials during the day. At age 14 finally I had a Complex Partial and was diagnosed. The nightly bedwetting was still continuing. They did finally take me to a Urologist who did a test and determined I had a large bladder. Big whoop! You see they never connected the bedwetting with the diagnosis. Denial and ignorance can be very dangerous. When I finally made it to an Epileptologist Many years later, I learned I had Mesial Temporal Sclerosis. They look for shrinkage on the side of the focus since the hippocampus will shrink as a result of being sujbjected to repeated seizures. That always reminds me of frying an egg. When placed in contact with hot grease, the egg white shrinks, hardens, and is not in the same form as it was. In the case of brain cells, they are not as useful in this new form either. That shrinkage is something they look for on MRI to determine if there is evidence of repeated seizure activity in deciding if surgery is right for a candidate. A few years before, I had asked one general neuro to let me try Depakote, and he finally did after a lot of effort on my part. There is a story re that too! That AED was the first thing to ever stop my bedwetting cold. I was way into adulthood by this time. The Epi came later on. I have a neice who also has had febrile seizures on a couple of occasions and has some wetting to occur but not every night. Time will tell how that turns out. Loss of bladder control was a hallmark of my Complex Partials. I have to wonder about all those kids in Psych hospitals, especially those run by the states, who are there because their bedwetting was considered to be a behavioral problem. No thorough asessment nor follow up of this. Just locked away and forgoten. I have worked in places where there are kids like this! Got myself fired once for asking if anyne had done an EEG! They'd lose money if it was determined that the child had a physical problem instead of a behavioral one. Based on how my father handled the situation and what he thought of my bedwetting and of me, I guess I possibly could have ended up one of those kids, but he'd have to admit there was some sort of problem. Denial was too strong to allow that. Phoebe

    Last edited by Phoebe; 04-16-2004 at 09:17 PM.

     
    Old 04-17-2004, 12:51 AM   #11
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    Re: he has started wetting the bed, arew these part of siezures?

    Quote:
    Originally Posted by gagcas
    well last night makes three times this week gage has wet the bed. im am at my wits end. i am really not sure what to make of all this. i am calling the dr. office today, but with it being a clinic the neuro is only there on wednesdays a couple times a month. im not sure what they could do since our appt. for the 24 hour study in pittsburgh is only a couple weeks away. bums me out a little. he is still on the zarontin two tsp. twice a day. and i think he is adjusted to it. its really wierd. it seems like once the little night spells stopped the bed wetting started. i wish i could see what going on while he sleeps. has anyone ever vidio taped thier kids while they are sleeping to see if they have them in there sleep. i wonder if that would help me to see. thanks for letting me vent ahead of time.
    Hi, i'm sorry that your son is still wetting the bed. i understand completely that you want to get to the bottom of it and discover what is happening while he is sleeping. My parents wanted to do this as well...I wanted them to tape me too! But instead we bought one of those baby walkietalkie things. (I don't know the real name.....but you leave one in the room and are able to carry the other one around and listen to see if your baby is crying?)...so i turned it on when i went to sleep and my mom had the other one on her night table... It was helpful..She would wake up if i was having a seizure and all..maybe you could try that?

     
    Old 04-17-2004, 01:08 AM   #12
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    Re: he has started wetting the bed, arew these part of siezures?

    Quote:
    Originally Posted by tkdmom96
    Are you by chance from Canada? I see you mention going to university and that seems to be a Canadian saying. Just curious, and good for you deciding to go away. You will need to learn to cope in many areas of your life with E. I applaud your courage, especially only a few years after being diagnosed.


    We have since found, through her MRIs that she has Mesial Temporal Sclerosis, which is a shrinking of the left hippocampus. According to our Epi, Katie was born with this and when the febrile seizure came it irritated the hippocampus and that is where her seizure focus has been all these years.
    How many SPs do you have per month? Do you seem to have more problems around your cycle?

    Take care, and thanks for your responses...

    Vicki
    mom of Katie, the daughter I admire more than words can express
    Thanks for the support Vicki....and yes..haah I am from Canada. In Canada it is soooo natural to call college (like in the US)....university. College in canada means a different thing here than in the United States I believe.

    For me it is hard to determine how many seizures i've had per month or so... (as i'm usually sleeping) But from what I believe my lamictal (of 200 mg a day) seems to have helped most of them. Though i would say every 2-3 months or so I wake up and suspect that I had a seizure that night. (this is due to a headache, being tired that usual, feeling dizzy, deja vu, sick....) Or sometimes I have forgotten to take my medication (i know! even after all these years!) and then I sometimes get a seizure...oops..

    So as a whole I would say my seizures are undercontrol...(or undetermined..haha). Also, I haven't really noticed that my seizures happened near my cycle..before my medication worked it seemed that i would just get my seizures at random..

    I don't believe i've heard of Mesial Temporal Sclerosis...is this what has caused Katie's seizures? How does one get this?

    thanks

     
    Old 04-17-2004, 04:23 AM   #13
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    Re: he has started wetting the bed, arew these part of siezures?

    phoebe,

    that story was heart wretching. i can only imagine what your childhood was like. i too was abused as a kid. physical, mentally, attempted sexually as well. it seems as thoguht you have come through with a good head on your shoulders.

    gage seems to be going through stages with his epilepsy. almost like the noticable signs come out and they get bored and move on to something different. now he was dry last night so maybe it will cease for a little bit. i only have to get through to the 4th of may. i guess some people it is just easier to deal with the "old wives" tales as to why something is happening rather than for it to have an undeniable reason. i am working very hard to get it to people. it seems the ones i have the hardest would be the older generation and that they are set in thier ways from back then. im not giving excuses for the way my son acts, just reasons as to why. with us not knowing all there is to know about his epilepsy, thats all i can do at the moment.

    i give you a kudos to the field your in. im not sure what it is but from your description it seems like it is hard and rewarding at the same time. i hope things got easier for you as you grew up and thank you for the insite.
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    Old 04-18-2004, 03:03 PM   #14
    tkdmom96
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    Re: he has started wetting the bed, arew these part of siezures?

    Hi Wokstar,

    Mesial Temporal Sclerosis is the shrinking of the hippocampus, from seizures starting from this area. Easiest way to explain it. This area is important for memory function. Through all of the tests Katie has has done, we found that she has bilateral memory (both hemispheres have memory). This has ocurred for Katie, the docs feel, because she had seizures from such an early age. The right side started to compensate. Katie has been fortunate to not suffer any serious learning disabilities. She has some comprehension issues with some school materials, but nothing that hasn't been able to be dealt with.

    This is Katie's area of seizure focus, which we were able to pinpoint even more so, with her recent subdural strip placement surgery. It was a very beneficial sugery. She may be able to have surgery without a grid placement, which lessens the risk of infection.

    Usually when a person with MTS has an MRI done, the area where the hippocampus is located on the MRI, is a brighter white reflection. Rather than the varying greys and blacks found on an MRI. This was one of the tip offs for our Epi. Katie shows a bright white area on the left hippocampus. I believe this is because of the shrinkage of the hippocampus and the bright white means there is more spinal fluid in this area than normal, filling in the vacant areas. That is what I think I remember from our visit with the Epi last October, when we looked at the MRI in depth. I had so much going through my head at the time. We had 2 Epi's, a neurosurgeon, 2 Epi nurses, a social worker and Katie, my husband and myself in a small exam room for this appt. Unfortunately my short hand stinks.

    Do you happen to know where your focus is? Have they been able to find it?

    Vicki
    mom of Katie, the daughter I admire more than words can ever express

     
    Old 04-18-2004, 11:19 PM   #15
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    Re: he has started wetting the bed, arew these part of siezures?

    Hi Vicki,

    Thank you for taking the time to explain Katie's condition to me...I find epilepsy related subjects most interesting. (obviously haha)

    No, we have not been able to determine my focus...I just seem to get seizures (simple, complex, tonic-clonic). My MRI came out normal when i had it 6 years ago, nothing came up then. There is no one in my family that we know of who has epilepsy either. Though the majority of my seizures happen while i'm sleeping....so there is some connection there. How many MRI's did Katie have until you discovered her area of problem?

    my epilepsy is a mystery to me....which i find frustrating. But that's the way life works i guess...it's full of mysteries (good and bad)

     
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