new type of seizure?

Melissa - posted on 05/26/2009 ( 24 moms have responded )

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My daughter Morgan is almost 4 months old. She has been having Grand Mal seizures since she was 2 months old. They put her on Keppra 100mg 2x a day. She has started having silent seizures, the staring spell this weekend... i am not sure what to do. I called the Neuro and they still havent called me back and its been HOURS... they are closed now... any advice?

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[deleted account]

Melissa, take heart. I have a son who will soon be 16 yrs old. He had mild seizures from 3 to 6 yrs. When he was 8 yrs old he started with the Grand Maul seizures. It took some time, but eventually we got them under control, however after getting the grand mauls under control, he started experiencing two new kinds, absence seizures and dizzy seizures. The absence ones were noticeable only because I would be talking to him and you could tell he was just 'absent' (not like a normal teenager absent either). I believe my mother stated that he always seemed to be 'off somewhere' and the teachers complained that he was daydreaming all the time. I kept him home for a week from school and under my observation to document the episodes, sure enough he had many a day. A visit to the doc and increase in the meds stopped the absence ones, but then the dizzy ones started. He would complain of an upset stomach just after taking his meds (thought it was a side effect) but while observing him one day I watched as his eyes began to twitch from side to side, as if he had spun himself silly, another trip to the doc after several days of these and we adjusted the dose yet again and now as long as he always eats prior to taking the medication and remembers to take the medication, the seizures are controlled.

Julie - posted on 06/21/2009

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The staring seizures are called absent seizures. My 9 year old son, Chase has had them since he was 15 months old. He also has drop seizures. At his worst he had 100 plus drop seizures a day plus countless absent seizures. He used to be in the ER 3 to 5 times a week for stiches. And emergency surgery from having a seizure in front of his fish tank at 18 months. Shatter the tank and slit his throat. Barely missed corodid artery. Dr said he was lucky. He is basically under control now during cool weather (visable on EEG) but has visable seizures during warm and hot weather 80 plus degrees.

Ywellen - posted on 06/21/2009

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Hey Melissa my name is Ywellen and I have a daugher now 18 yrs. old with those same kind of seizure you are tallking about. They are called Absent Seizures. She was born having seizures and we didn't get this name until about 5 yrs ago. We were always told she just had a seizure disorder and they didn't know what was causing them. We've been to some of the best doctors insurance could pay for for them to keep giving us the run around.

My daughter has always had seizures but at one time they were under control and she wasn't on medicine but the doctor thought she was. She stopped taking it because she said it made her seizures worst or the medicine was too strong she couldnt function on it. Last month she was off at college and they found her outside on the ground having  seizure and rushed her to the ER and they told me she was overly medicated on Keppra and I agreed with them. So as her mother I took her to her doctor the next day and he increased it again and I told him what the ER doctors said he was upset and increased her topamax instead. But nothing has controlled her seizures lately but prayer. I have one doctor that won't release her file to the doctor she sees now, so he can see where we go from here.  Doctors are good but you really have to stay on them to get the proper test needed to make sure she's alright. If  you don't stay on those doctors they won't do their  job like they should. I had to stand in the docotr's face and tell him you will do your job and make sure she's alright on the right meds and do EEG's and Blood work. We were going through the some thing you're experiencing with your doctor. Another thing I want to tell you is don't let them tell you your baby's not having a seizure, because I went through that with my daughters doctor. She went ahead and had her admitted to a hospital in other state and the neurologist walked in and just sat there for 2 hours and then said to me :don't even let nobody tell you that your child doesn't have seizures because in 2 hours she's had over 30 seizures." I was so shocked because the doctor where I live kept saying those aren't seizures and she's just wanting to wet hersself  for attention. When her abstince seizures are really bad she wets herself. It's like her body shuts completely down for a few seconds and now they're getting worse and the doctor is saying nothing again and I refuse to let him increase her meds and he hasn't done any labs or EEG'S. Again I say to you Melissa push the doctor's no matter what if you're not comfortable with what the doctor is saying or doing always get a second opinion. I'm praying for your lil angel as well as you because I know how it is to have a toddler having seizures and not knowing what to do next.



 



 



Quoting Melissa:

i thought the aura was what they feel before having the seizure, obviously i dont think Morgan knows... she's only 4 months... but if im not mistaken Morgan's starring spells are called Absent Seizures. not 100% on that one.





 

[deleted account]

hello,
my son had the same exact what i refered to as gazing seizures and my dr's had me monitor them and because they still kept coming even after upping his keppra to 6 ml twice a day they added another seizure med to his regimen it is trileptal and that seemed to do the trick at keeping the seizures at bay but you could also notice at some points during the day that he would start the gaze and if you called him he would snap out of it it was like he was fighting the seizure it was just aweful for me to watch so we had the video eeg which took 9 days instead of the original 5 days it was supposed to take and he had the pet scan test in which they inject a chemical into his i.v during a seizure well actually when it is finished and also when there is no activity and he had the scans and they get all the data from them to determine the next steps which in my sons case was surgery to remove the mass he had the surgery on may 4th and he recovered awesome i was so relieved and surprised he came out of surgery giving high fives and talking which made us and the dr's in awe that he came out so alert.. he even got to leave the hosptial and come home only 3 days after the surgery which the dr's where also impressed by. i pray and thank god everynight for boston childrens hospital and how very grateful i am for having such a top notch surgeon that took the time to listen and give us our son back! the biopsy did show it was a oligodendroglioma tumor which can reaccur but i just stay positve that nothing returns and he stays seizure free he is still on his keppra and trileptal and the dr's say he will stay on them until everyone feels that nothing is going to return.. well i just hope you get all the answers for your daughter and if possible if your current hospital is just not taking care of things like you know they should i would look into other hospitals like boston childrens they are excellent trust me i have my son today because of them... well you will be in my prayers...

Shiquetia - posted on 06/08/2009

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Quoting Melissa:

new type of seizure?

My daughter Morgan is almost 4 months old. She has been having Grand Mal seizures since she was 2 months old. They put her on Keppra 100mg 2x a day. She has started having silent seizures, the staring spell this weekend... i am not sure what to do. I called the Neuro and they still havent called me back and its been HOURS... they are closed now... any advice?



 



hi melissa my name is shiquetia i have those silent seizures believe me i'm not in your position i don't know my surrondings when i come out prayer is your answer if you believe in god he will work it out it weakens your body and your brain i pray for your baby that god will heal her and that you will be relieved





 

Shiquetia - posted on 06/08/2009

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Quoting Melissa:

new type of seizure?

My daughter Morgan is almost 4 months old. She has been having Grand Mal seizures since she was 2 months old. They put her on Keppra 100mg 2x a day. She has started having silent seizures, the staring spell this weekend... i am not sure what to do. I called the Neuro and they still havent called me back and its been HOURS... they are closed now... any advice?


 

Alice - posted on 06/07/2009

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Well the doctors there at Columbus, kept her for 3 days(it was longer but that is how long she stayed on the LTM)...So with that said I think the first day she didn't have any than they didn't capture one on paper (however, they captured it on video) and no one witnessed it personally except for my husband and me. So maybe they will keep her longer than 24 hours to see what's going on. But where she is already diagnosed I don't know if they would. Down here at our local ER they sent Abi home when she had over 8 seizures, turned blue in the face under her eyes and around her lips. The Diastat didn't control them. She would fall asleep for a minute or so than she would start having them again. Of course I was scared and all. I begged with the doctor's and nurses to keep her for evalution because once again I was afraid I wouldn't know what to do if she did stop breathing. They came back in an hour and said there is no reason for us to keep her we evaluated her and there's no sign of anything happing . Bring her back in if it worsens...WELL DUH... I said I will apologize before I open my mouth for being rude. and than I asked her...what is worse than not breathing...she responded by saying again just bring her back to the ER if it gets worse..I told her, I said well if she stops breathing. its appearant this hospital isnt going to do anything it seems like if I brought her back in it would be wasting my time and I don't have time to waste when it comes to this matter. I am sure you understand that because it seems like you don't have to waste on my child either. I was so mad. When it comes to my children I am very outspoken. I was asked to leave the hospital before down here also...another day another story..

I guess the reason for that story is if they try to send you home sooner refuse, tell them your scared...tell them anything to try to keep her hooked up. It will happen eventaully. We drove to Columbus for a test I don't remember if it was CT Scan, EEG or a MRI however, those are only good if they are having the seizures than while they are in it. NOTHING, I was so furious. I thought maybe it wasn't as bad as I thought why didn't she have it? On our way home that day, we went to Dairy Queen down here in town and than while we was in the drive thru she started to seize. We pulled out and took her directly to the ER and her PED. is such a wonderful man. He got her in there right away to be seen through the ER and within the 30 minutes we was being transported to Childrens in the squad. Remember from where I live it is 2 hours drive...by squad they got her there within 45 minutes. IT WAS AWESOME THAT MANY PEOPLE CARED. So yeah it works out ot be that way sometimes. I would get fusterated so bad over it. I wanted her to have a seizure because I wanted the doctors to see it. NEVER HAPPENED THAT WAY...lol. KEEP YOUR HEAD HELD HIGH..

Abi knows when it's medicine time (she is 2) and she will say med meds. She takes it pretty good. I think she realizes without it she will have weird feelings that make her upset..so I hope Morgan will be able to get her medicine worked out to make her feel better.

Melissa - posted on 06/06/2009

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no you are the only person i know who has a child with Epilepsy. Morgan is ok today, no seizures. She had a couple last night. No they havent scheduled it yet. if i dont get a call on Monday i'm going to call back. this is crazy to keep her waiting while she keeps having seizures. i'm scared she wont have one on the machine. she has gone a max of 4-5 days w/o seizures.

Alice - posted on 06/06/2009

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Quoting Melissa:

i thought the aura was what they feel before having the seizure, obviously i dont think Morgan knows... she's only 4 months... but if im not mistaken Morgan's starring spells are called Absent Seizures. not 100% on that one.



Hey girl,



    Just checking in on the lil ones.  How is Morgan doing? Did they ever schedule her LTM?  Please keep me posted and I will be trying to send that special thing to you sometime this coming week..If you know anyone elses' address that has a child suffering from Epilepsy please send me the address and I will try to send them one as well....later friend.

Melissa - posted on 06/06/2009

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i thought the aura was what they feel before having the seizure, obviously i dont think Morgan knows... she's only 4 months... but if im not mistaken Morgan's starring spells are called Absent Seizures. not 100% on that one.

Alice - posted on 06/05/2009

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Isn't Aura what you feel before you have one? Just remember I don't have them, my 2 year does. I know she feels them coming on

Rhonda - posted on 06/04/2009

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I think the starring seizures are called aura seizures. I have had grandmal seizures since age 8yrs, now 33. I have been seizure free since 1994. Best WIshes dear.

Alice - posted on 05/28/2009

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From personal experience seizures can make them tired. If she is having alot of them that could be the reason why she is sleeping. It's hard to say if it's the medicine. Abi needed to adjust to her increase due to behavioral issues. Abigail goes to Childrens hospital in Columbus she see's Dr. Tsao. He's hard to understand at times but he is the greatest to me. I am very thankful to have him as a doctor.

Melissa - posted on 05/28/2009

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lol i have Ohio Medicaid, so our medical bills are free. i dont have a car unfortunately so im at the mercy of friends and relatives to get me to the hospitla, if i dont call a squad. she hadnt had a LTM yet, her EEGs were normal too, she doesnt have a trigger so she didnt have one during the EEG. Her MRI and CT showed a lesion in the peridal lobe of her brain but it seems to be getting smaller. I know what you mean about the docs, i kicked one out of our room at Cincinnati Childrens becasue he said that he didnt believe she was having seizures because the tests were normal. the asshole.

she just had a large cluster of the absent seizures, about 6 of them in 3 hours... i am going to call monday but if she keeps getting worse this weekend ill have her taken to Childrens... i know the meds will work but im scared that any seizure could hurt her specially when she cuts her head open on her bassinet which is padded with cloth, over bars. she must have repeatedly hit it while she was seizing. i was in the bathroom bathing my son. she had been sleeping so i didnt think it would be a big deal to leave her alone. i feel like crap that she hurt herself. she's my little girl and i feel like i failed her. i know i didnt but it still sucks. She also has Laryngomalacia (floppy skin on her voice box) that causes breathing issues, they did a surgery called a Supraglottoplasty to fix that and it seemed to help but now she aspirates thin liquids so i have to thicken her formula with rice cereal because my insurance doesnt cover Simply Thick. she has slept almost constantly today. do you think its cuz of the seizures? or the med increase? or both? Add me as a friend on your Facebook, Search Melissa Baxter, my profile pic is the same as the one on here. But lets hope she doesnt have anymore heh... my sweet little one. and dont worry about the length i like reading them. it helps me feel connected to someone who's been there

Alice - posted on 05/28/2009

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wow I hate to hear that. I have been there. I think Abi had a seizure and hit her head off our treadmill. ( I wasn't in the front room). However I sold that treadmill after she got hurt. I wasn't going to allow it to happen again. She had to get 2 staples in her head. That was the worse I felt ever. I would replied "well you shouldn't be a docter because doctors care".. for the dumby who said epileptic have seizures. lol. I had someone who told me that she doesn't have cancer and I need to get over it. They don't know what we go through. They don't know that we need breaks from the constant worries of what if's and always second guessing ourselves. That came from a low life family member. I am out spoken anyways! I had told one Neurologist to get the heck out of our room and not to come back in. She made me feel really uncomfortable. She wouldn't talk to me. She would talk to only my husband. She wouldn't answer any of our questions. I was already furious due to them telling me to put her on something for acid reflux no matter what he told them. EEG's, MRI's, CT Scan...everything came back absouletly normal...so what the heck is the problem..she doesn't puke when she eats. She shakes like a Yoohoo when she wakes up...I knew what it was before they diagnosed her I was praying for something else but I knew it was seizures. I was furious because these high tech LTM (has she had that?) EEG's didn't work. Everytime I would push the button it would stop working all together. I was to the point going to get the cleaning lady so someone would witness it..The nurses took forever to come to the room. So I showed my hiney. I started to push the nurse call buttons and than go to the door and yell for them. I thought maybe if I started to yell for them they would see that it was urgent...LOL.. This is my baby something was wrong with her. So finally the LTM started to work and they discovered that she was epiliptic.

Did you know that CT's, MRI's and EEG's are not good to diagnose seizures unless they have one inside the machine. I was getting upset why do it if she isn't having one. YOU KNOW IT'S NOT GOING TO PICK THEM UP. I guess the reason I shared my story with you about being outspoken is this reason. WE ARE OUR CHILDREN'S VOICES. Sometimes we don't have the chance to sit back and relaxt and wait for answers. Never feel like you are at fault for anything. Speak up and be heard. Your child needs that. I am not saying go get thrown out of the hospital...just never think you can't make a difference. If it wasn't for me telling the doctors and being heard and not just settling for some half tail answersd. She wouldnt' been diagnosed as soon as she was. TAKE HER IF YOU NEED TO to the ER. Sometimes it helps me just being able to walk out the door and let them examine her so I can catch my breath. (so i know that she is okay). I don't know what your insurance is but they can't get blood from a turnip. That is my theory. I can tell your a good mommy and you care about her and you just want the best for her. We all do. I hope this doesn't seem like a novel...NEXT TIME I WILL TRY TO KEEP IT SHORT. I will continue to pray for you and your family.

Melissa - posted on 05/28/2009

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well she had another grand mal today, she just got her 4 month shots today too. She actually cut her head open with this one... its not bad just a small cut but im sad to see her having another big one. i have to call the Neuro on Monday. The on-call line said she shouldnt be brought to the ER b/c epileptics have seizure... (har har har) i hate people like that. i do like the Keppra so far i just hope that they can get the right dosage soon, i hate seeing her like this

im glad your daughter hasnt had a seizure in so long thats awesome! i hope it keeps up!!!

Alice - posted on 05/28/2009

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Abi doesn't have brain damage from the seizures. I just got her evaluation today through speech and she understands alot more than she talks. She is like 1 standard point away from being "normal" her speech is way below 70..which isn't good. However, she accomplished so much I believe she will over come this aswell. Abi has been seizure free for 131 days..16 hours 19 minutes and 40 seconds...lol..that is awful but every minute counts. She would have jerking in her left hand and they said it was tremors but it to me looked like it was a seizure. So they increased her medicine to 3 ml 2 x's day. It has been doing great. She is only two and on such a small dosage they think eventually she will outgrow them. I cross my fingers and hope and pray. She has the complexed seizures. It starts on her rights side (that is why she is delayed on her left side) than she went from that to both hemisphere, to staring, shaking only in her left hand back to complexed partials..now to nothing. It seems like forever before they find out the correct dosage but when they do you will see almost instant improvement. Keppra has been great for Abigail. I think when they get it under control with Keppra you will like it for her. They say the younger they are when they start them the higher chance they have to out grow them. Also if the smaller amount of seizure medication it takes to control them the higher the chance they will out grow them. NO I am not a spokesperson for the pharmictical places. It just has worked the best out of the two medicines she was put on.

Melissa - posted on 05/28/2009

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no, i dont think it was wrong, my son is 2 years old and he knows to come to me and say "mamma sissy jerking" if she's having one. he saw one of her big Grand Mal seizures. they just increased her Keppra to 150mg, or 1.5ml 2x per day today so we will see if it helps i hope so. How long has Abi been seizure free if she is? i cant wait for Morgan to be seizure free i feel so bad for her. My huband is the same way... he doesnt like taking care of the kids thats my job. I am blessed that Morgan is meeting her milestones and doesnt seem to have any brain damage from the seizures yet. if you wanna add me my email is gundam_stardust@yahoo.com. you can feel free to email me, add me to your facebook w/e. i am also on myspace but not often. its nice to have someone to talk to who has been there too

Alice - posted on 05/27/2009

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OMG I know. I have no one but those who help me through the rehab place here locally. I mean I do have my husband. but he isn't the take care of them type. That is momma's job. Abi use to have the staring spell and I really don't know what ever happened to them. She was diagnosed with complexed partial seizures. than grand ma seizures than the staring.She had alot of seizures but they are now controlled by keppra. The trileptal was causing her to have the grandma. So maybe it's just the dosage of the medicine that is controlling the jerking but not enough meds there to control the them fully. Keppra has been great for my lil miss Abi. I feel like I am alone but in my heart I am not so. Thanks for posting back. It helps me aswell to talk to someone and share my experience. I have a 7 and a 5 year old that knows what to do and what they look like. I made them experience the reaction she goes through to help them undertand it looks scary but it's okay she will be okay..is that wrong of me to do that?

Melissa - posted on 05/27/2009

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she has both grand mal and silent seizures or staring episodes. the grand mals have stopped for the time being with the use of Keppra. its the new silent ones that are freaking me out. they are totally new since the start of meds. I have my husband but he's at work or sleeping almost all the time. so i take care of her and my 2 year old son mostly alone. its hard but i just keep trying to get through it all for them they are my world.

Alice - posted on 05/27/2009

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Quoting Melissa:

she has had 6 more since yesterday, the Neuro called back this morning and told me to monitor her and video tape them if i could (which i cant no video camera or camera phone) so i have to keep a diary of the new seizures... i wish they would do more than wait and watch... she doesnt go back to see him till June 9th... it just seems so far away for them to do nothing for her... i've called the Neuro on call and he said that silent seizures arent worth hospitalization. only the grand mals she was having im so darn frustrated



I feel for you.  I think they are all worth hospitalization. It is very fustrated.  I felt guilty for the longest time about my Abigail's seizure. June 9th does seem like an eternity when she is having them now.  It looks horrible. Babies shouldn't be doing this.  that is what I tell strangers that I talked to that never seen a baby have one.  I just tell them take an adult seizure and put all that energy into a baby.  YOU WOULDN'T WANT TO SEE IT.  It is so much worse to see a child than to see an adult.  THEY ARE SO TINY. I have to keep a diary also.  do you have camera on your digital camera or something like that? That is what I used to video ours.  I have a Kodak easyshare and it video's also.  I hope she is alright and I will keep you in our thoughts andj prayers.  You have to remember they see these everyday worse than what we have seen.  I know if you are anything like me you think that is the worse because it's your baby. Keep your head held high.  Please let me know what goes on with her.



P.S what kind of seizures is she having ?? a different kind?? Are you doing this all by yourself or do you have family helping??

Melissa - posted on 05/27/2009

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she has had 6 more since yesterday, the Neuro called back this morning and told me to monitor her and video tape them if i could (which i cant no video camera or camera phone) so i have to keep a diary of the new seizures... i wish they would do more than wait and watch... she doesnt go back to see him till June 9th... it just seems so far away for them to do nothing for her... i've called the Neuro on call and he said that silent seizures arent worth hospitalization. only the grand mals she was having im so darn frustrated

Alice - posted on 05/27/2009

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I am an over reacting mother. If it is to that point of making you uncomfortable I would take her to your chidlren's hospital. I do that constantily. Sometimes you have to make them feel your urgency but don't give up. For example my daughter had 8 seizures in less than 12 hours. It might not seem like many but for us that was to many. I go take her to our local ER (our closest Children's hospital is 2 hours away). I showed them the video and they looked at me an said she isn't having a seizure (that is why I suggest a speciality hospital) and I looked at that docter and said well I still want her admitted I don't know if I can do what I need to do to take care of her if she keeps having them back to back. I had already adminstered Diastat rectally and it didn't help. He told me no he would not admitt her because she didn't have a seizrue. I was furious. I looked at him and said you know I am glad you want to school and became a docter but I got the best education there is. he huffed and puffed and said what is that. I told him I am her mother. he left out of the room within 3 minutes after I said that and shortly after that she was admitted. Don't give up to monitor her the best you can and keep bothering them. Eventually someone will get sick of you and take your call. Call the hospital if you have to eventually they will send a squad out to get you becasue they will think you went over the "crazy" edge and when they get there tell them to look at your daughter..lo... sorry you have to have a sense of humor about it or it will drive you crazy. How is she doing today?

Heather - posted on 05/26/2009

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you c an always call the neuro on call, that's what they're there for. i frequently found that when I was waiting for a call back, they didn't feel my urgency. My question is are the silent sz increasing in frequency? was it only 1-2x and none since? If they're over and it's been a few hours, if you're comfortable you can wait till morning. If she's still having them, then call the neuro.

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