My 8 year old had a gran mal seizure in June....horrifying for me **new to all this

Amanda - posted on 08/01/2009

oh yeah i forgot to mention i noticed a lot of u moms saying u never let your child out of your sight, Well i understand that but as u can guess with newborns it was hard to watch him 24/7 i learned about a dog who can be trained kinda like a seeing eye dog, but this dog is trained to alert u when it detects something is wrong witht he child, and i will tell u i didnt believe it, but it works, I went to my local humane sociaet adopted a black lab which they say is the best because of the mother instink. and they trainedher to respond to my son. she has come into my room and even stood my my sons side and barked to alert me several time. If u r interseted call ur humain society. It helps to give me a little peace of mind, they are together 24/7 best friends. and i alwasy know she will let me know. just a little info that might help.

Amanda - posted on 08/01/2009

omg u poor woman i totally feel u and let me just say first that there is a lot of drs out there who dont know aor care to know about these situations ,but u as the mother is your childs best advacate, dont ever give up or excet we dont know for an answer if u know different. I have a little boy 2 1/2 now, he started seizing on his 1st b-day they said he was having a febrial seizure from and ear infection, i didnt know any diff so i went along with it, the biggest misstake of my life. Since then my son has has a total of 76 seixures and 18 months. that is a whole hell of a lot if u ask me. I had to quite my job to stay home with him,because there is nobody that will provide daycare for him with the cronic seizures, they have done every test under the moon a hundred times and no answers on why he has these seizures, it has gotten to the point when he has one i have the video camera going so i can later show the nuero. they never come on the same and not one is ever like the other pretty scarry huh. i know exactley how u feel. The one time he had a grandmal i was 8 months prego and suppossed to be on bed rest, with pre term labor. i heard him in his crib, i went in to check and he was unresponsive. I was so scared to leave him i picked him up and carried him to go get the phone,( ok imagine being as big as a woman can get from pregnancy that was me with twins, snd now i'm balanceing my son on my belly and walking to the phone. )well by time the emts got to our house they knew the routine. (they actually know where the spare key is they have been to my home so many times. we live in a very small town)they enter my home and find my son in my arms and seizing they took him and ran they didnt even stabilize him as soon as i told them i found him like this 25 minutes ago they were gone and there i was in the back of the sherriff car following the ambulance and thinking my son was going to die. that i would never see him smile agian. well i was so wrong. they finally got him to stop when they got to the hp and gave him injections then he was in the hp for 2 weeks and very out of it. I am very pleased to say the only damge it caused was a little speech so far. But otherwise by looking at him he looks like a very normal terrible 2 yr old.lol By the way i gave birtht o my twins two days later from the stress the dr decided it was better for them to be born. I am so sorry that u had to go through that, like i said i know exactley how u feelo, but again u are your dd best advocate and if u dont think its right its prob not, i have run into some drs who thougth i was crazy until i showed up st the er with the video they begane to realize that just because the tests say there is nothing there doesnt mean there isnt, and believe me that was hard to do the video taping i mean. well i wish u all the luck and god bless and i will pray for your family,

Lesty - posted on 08/01/2009

Hi Farrah. Sounds like you had a case of really bad bed side manners. Thats absolutely horrible, Im so sorry you went thro that. Sometimes they forget that us, the general public, dont know everything that they do. What he neglected to tell you, was that other than the physical injury from the fall, Gran Mals are otherwise harmless. They dont feel anything, nor do they even know what is going on, or that you are even there at all. Dont EVER try to force the mouth open unless they actually have something in their mouth they could choke on (gum, food, vomit, etc.) If by chance they do have something in the mouth, first try just quickly flipping them over, to allow gravity to pull the object out, placing just your hand between the forehead and floor. Try to remember (which is at times next to impossible when you are in a panic) that gran mals typically last only 30 sec to 3 minutes at most. A person can hold their breath and still survive for that long if forced to. The body when going thro a gran mal siezure, uses every single muscle within the body, and tightens and releases at an extremely high rate, so moving them or trying to pry them into positions can actually sprain or tear the muscles. I also add, they can actually bite your finger nearly off depending on how much strength they have in their jaw. Keep some tylenol or childrens motrin handy, (check which are safe with any meds she is taking) even the muscles within the brain seizure as well, and so it tends to leave a really bad migraine. Allow her to come around and wake up as long as she needs, keeping the surroundings as quiet as possible, when possible too. The only time it is truly necessary to call 911 is if they have 2 of them back to back, within about 30 minutes or less, or if they have more than 2 in one day. (because they know that gran mals are harmless unless other injuries occurred during it, they will always treat it as no big deal, every time) Try imagining yourself as a child, standing in place, and next waking up in the back of a strange truck, with strange people you don't know, every part of your body hurting from this tremendous workout you never even did, and a serious headache from nowhere. That would be what they experience, so try to hold back from it if you can. Otherwise, call her doctor for any other changes, or reports of seizures. Good luck to you, and I hope this helps relieve some of that "not knowing" experience.

Heather - posted on 07/28/2009

Counting meds, that's good! Wish I had more advice- sounds like you've covered all the bases. I remember living my life in days, then weeks and then months between seizures. We did once actually go a year. Hope all goes well, I'll be thinking about you!

Tracy - posted on 07/28/2009

Heather....Nope, no Diastat, though I have read about it. You are right, there is ABSOLUTELY no way he would ever deal with that. Ativan is what the ER doc gave him a few weeks ago when he had back to back sz...thanks for reminding me of the name. That was the first time he had that. As far as Keppra goes, so far it seems to be working for the most part, but I can't really tell due to the inconsistency that he has taken it. For the last three weeks, I believe he has been more consistent,but really can't tell unless I count his meds...which is not beyond something I would do at this point :) If we could get past the 6 month mark with some consistency, I think we could figure out if the Keppra is working or not. And since he has only had 6 in 9 months (3 post medication) I wouldn't say that we know.



Thus far, I haven't really experienced any mood swings (other than normal teenaged ones) but I am aware of this side effect, and do watch this.



I have had almost everyone I know talk to him about his meds like you suggested. The only one that may have had some impact is his 17 year old brother. Roommate didn't work out so well, so that isn't an option. This is the one and only time I wish he had a steady girlfriend :) thinking it might take a girl to get through to him. Thanks for all your thoughts and encouragement!

Heather - posted on 07/28/2009

Farrah- Good Luck! Praying that this one is the Dr you need!

Tracy-We've had 4 yrs of sz, and at this point we're down to 5 a yr and I still get anxious when my cell rings. I can't not have it, and I have to ck the caller ID. My job just moved 40min away and I had to go with it- couldn't find another job closer- and I really get anxious when it rings. Thankfully I am able to work my schedule so I work on my husband's days off so there's always someone close by if something happens. I know that driving need to leave and rescue your child, and the guilt you carry for not being there when it happens.

To be honest, to deal with the guilt and fear and anxiousness I had to start taking an anti anxiety drug and go to therapy to learn some very effective coping skills. That was about 1 yr after the sz started. I did that for about 6 mths and it helped considerably. Was able to come off the meds. Unfortunately we have a really full plate now and with being so far away at work I've just had to start the meds again, and am going back into therapy to refresh on coping skills! I highly recommend it.

As for the ambulance, has his dr given him Diastat? Being 18, I highly doubt he'll want it- it's given rectally and extremely effective- we give it 5 mins into a sz and it usually stops the sz w/in another 3-5 mins. If it doesn't then we call the ambulance. We've waited 15 mins before calling the ambulance, but only once. I would say 5-10mins, 10 mins max before calling. If Jacob has what I call mini sz- a cluster of 7-10 under 1 min a pc in an hr or 2 we give him Ativan- seems to relax him just enough to knock them out of him. More often than not, once they're well controlled the breakthrough sz are usually due to a weight change.missing doses issue- although our dr said missing 1 dose shouldn't be enough to breakthrough a sz.

Now, Keppra- My son is on this and Topamax (it may take a while to find the right med for him- it's really hard to be patient when t his happens. We had to try 3 b4 we found this combo). Keppra is an intresting drug. It's newer and very effective, however can cause some MASSIVE mood swings (which could also by why he's having some acceptance issues, when you're trying to cope with the swings, a new condition and college). While adjusting to it, something not a lot of Dr's tell you is a side effect. Something they also don't mention is Vitamin B6 is an extremely effective way of managing those mood swings- talk to the neuro about it and the dosage. Keppra, also recently went generic. We tried it and had massive mood swings and breakthrough sz. I called the neuro, and was told that a lot of other families had issues with the generic as well- something about that particular generic compound is not as effective, so beware of that as well. But, some ppl are perfectly fine with it, so who knows?

Your son is also at that very independent age where he thinks he's an adult b/c he's 18, but you know better! (I remember thinking that very very well) And isn't listening to anything you have to say, no matter how much you know he needs it hear it. I have this issue with my parents (still, I'm a tad stubborn, as my mother would tell you! but I'm working on it), but if I hear the same msg from someone else, where it doesn't feel like it's my parents telling me what to do and I'm much more receptive to it. Have you tried to express your concerns to a close friend of his you can trust- how about the roommate who has sz as well- to see if he can hear and process it from someone else? Anyway, I've rambled quite a bit here- sorry- hope it helps. If you're interested, you can friend me and we can chat further.

Tracy - posted on 07/28/2009

Farrah, I agree....it is wonderful to know we aren't alone in what we are going through, even though I always feel like I am. It's amazing to me when I tell my story, even to people I know, their response is "Oh, I know someone who has that". I was oblivious to this disease before and now it seems as though a large percentage of people know someone dealing with this.



Heather, thanks for your words of encouragement, and advice. I agree that you always feel like you are waiting for the other shoe to drop. In fact I hate it when my cell phone rings, becuase the first thing I assume is that he has had another sz. I travel for my job, so I can't always be with him and I can't stand the phone to ring. Probably because when he had his second and third, I was away and couldn't get home. Does this feeling ever go away? I don't know if I can live every day with this overwhelming feeling of dread.



One last question....when do you know when you should call the ambulance, and when do you not have to? Is it okay to let him work through a seizure without calling as long as he recovers? He has been taken to the ER every time, and I'm just not sure its necessary since they really don't do anything but get him through the recovery time. I know once he goes back to school again in 4 weeks this decision will be out of my hands.



Thanks for all the stories. I see that some of you have it much worse than we do, and I feel bad for feeling sorry for myself and my son. I know it could be much much worse, and I pray every day his case doesn't progress, and they don't have to mess with his medication. I pray for everyone who has to go through this....it stinks.

Farrah - posted on 07/28/2009

Thank you EVERYONE for your responses.It is wonderful to have so many stories shared and to know I am not alone.

Heather,

Our house is lead free...our water in town IS not healthy, it has high levels of arsenic..they are trying to fix that problem...I do not use it. Icky...

Have a great day! We see the neuro for the first time in a few hours today. I will give an update later. :)

Heather - posted on 07/27/2009

Farrah- I couldn't sleep the other night, and your story popped in my head (not sure why, i seem to have random things that i think about then I can't sleep, go figure) and I was wondering how old your house is- could there be lead paint? have you had the water tested? I was just thinking what if they've been exposed to something you're unaware of in the environment.....

Heather - posted on 07/27/2009

Hi Tracy- I have a 5 yr old, Jacob who has sz. You've got your hands full. I can say although you will never get used to the sz, you will learn how to cope with them and how to care for him. The hyperawareness and anxiety you're feeling will never go away- I call it the waiting for the other shoe to drop feeling- but eventually just become a part of you, like always being aware of your children no matter where they might be. My dad is Diabetic- I say this b/c he had a really hard time coping w it when he was diagnosed. He fought it too, not cking his sugars or watching his meals, etc- i think b/c it was a constant reminder that there is something different about him than before and it's going to be a lifelong process he's going to have to deal with. That's a hard bitter pill to swallow, and at 18, your son probably can't see the long term ramifications of his current actions. He will come to terms with it eventually; he'll have no choice in the matter. I know the waiting for that is agonizing- the pain a mother feels for her child in crisis is indescribable. I'm sorry- I wish I h ad better advice for you, but all I have is sympathy and understanding.

As for the Neuro, I would go to a larger hospital/metro area. The best physicians are going to be there- they're always worth the drive. The most important thing for us was a neuro that actually listens to what we have to say, makes eye contact and treats us AND our son as real people with real opinions and valuable information and insight into our son's life. One that doesn't rush us through an appointment (although sometimes we have to be willing to wait as the dr is not rushing others through their appts) is a gem. Larger hospitals have the staff on p lace to keep the office running smoothly and have calls returned promptly by nurses to gather info. I hope this helps- hang in there.

Tracy - posted on 07/27/2009

Like Caroline above, I am new to this circle. My experience has been somewhat different than all of yours in that my son didn't experience his first seizure until age 18 while in his first year of college. His first one (tonic-clonic from what I have researched) happened at night in his dorm room. Coincidentally, and thankfully, his roommate has seizure disorder too, and knew what to do. After all tests, in the ER, (blood work, CT scan), everything came back normal. Thankfully, the ER nurse called me and told me everything....with HIPPA rules and my child no longer being a minor, they don't have to speak to the parents at all. However, this particular nurse understood what it was like to have your child be 2 hours away and go through this. He told me that one time seizures can happen to anyone, and could be caused by stress (my son is a pre-med major...very stressful), lack of sleep (typical college student), alcohol or drugs (not our case thankfully) or even meningitis. They actually suggested that he be checked by our family doctor right away and make an appointment with a neurologist. Unfortunately with his schedule, and being 2 hours away from home, we decided to wait till Christmas break. He had his second and third on December 12 and 13th, 2008 during finals week and luckily only days before coming home. Our family doctor (and the ER doctors) has been wonderful, its the Neurologists I'm having issues with. My son has been through every test known to man (blood work, CT scan, EEG, MRI) at least twice (both ER visits and our family doctor), all of which are negative, and the Neurologist we were assigned to has also done his own series of sleep deprived EEG, again negative or normal. We were told almost "non-chalantly" by the Neurologist that he has epilpesy and given the list of things he cannot do, including driving (ugh). I know nuerologists diagnose these things every day, but to us this was a complete and devastating shock. He was put on KeppraXR (1000 mg day) and told to come back in 6 months. My son, being a very independent, proud and stubborn young adult, did not handle this diagonisis very well at all. Went through (and still going through) the 5 stages...anger, denial....I wish he would hurry up and get to acceptance :) I don't understand it, but he seems to be the most angry about taking meds every day. Which was the next step we have gone through. I painfully took him back to school after winter break knowing he was struggling with the whole thing. I also knew that chances are he wasn't going to regulate his meds very well. Being the parent of an "almost adult" is difficult. He had another seizure in March (mid-terms) again, but admitted to me he had missed his meds the night before. His latest was July 5th, which was the first one I witnessed. A terrifying experience which I hope to never have again. Again, not taking his meds regularly. This one was different in that he was not in bed, but actually walking through the kitchen and talking to me. When he didn't respond to a question I asked, and instead "moaned loudly" I thought he was just "messing" with me so as to not have to answer my question. Nope...full-on seizure similar to those described above. Eye roll, complete upper body tension, then convulsions, biting tongue. I did my best to wrestle him to the ground before he fell (he is a football player..muscular and 200+ pounds). His younger brother and step-dad thankfully heard me scream and got there in time to minimize the potential injury. Emergency room trip (ER techs and docs were wonderful), tests (negative) seen by our family doctor who thankfully was on call, and released, only to have another while walking across the hospital parking lot. Family doctor admistered drug to stop seizure (don't remember what) and admitted him. Nuerologist never bothered to return any of my family doctors calls. Finally our family doctor (after 36+ hours in the hospital and numerous phone calls to our neurologist) upped his meds and had to release him. Another week passed and finally our family doctor called to say the Nuerologist agreed with his approach and would see my son over Christmas break....I am beyond upset.



Sorry this is lengthy. I am searching for any advice on finding the best Nuerologist for my son (we live in a town of 10,000 and an hour away from any major metro area), or any other helpful advice on meds or diagnosis research sites. Anyone with teen/adult children with late onset epilepsy? How do you cope as a parent? How do I get him to take this seriously (even losing his car doesn't seem to work) and take his meds? What do I look for in a Nuerologist? I need answers and all I have are questions.

Diane - posted on 07/24/2009

Your story is so much like mine. My 4th child, at 3yrs. old, on April 20, 2009 had his first Grand Mal (Tonic-clonic) Seizure. All of us watching TV and then James convulsing in the chair, unconcious, slow breathing, eyes rolled back, all of us freaking out, calling 911 in a panic!!! Since then he has had 11 more seizures and has been in and out of the hospital to date. One night it was 5 in a row! This is all out of no where and not caused from any other medical condition? My son is on Keppra & Depakene and still having "Simple Partial Seizures" from time to time. The doctors says he may grow out of it...but I am so concerned he won't? His meds don't seem to be working and it's so hard to deal with this "trial and error" type of medicating/treating him?

I wish you solace with your situation...having 2 children with Epilesy. Bless your heart.

Kelli - posted on 07/22/2009

Farrah,

I am so sorry for you and your family. It is alot to take in and I can't imagine dealing with two children with seizure disorder. My daughter was 9 1/2 when she had her first gran mal seizure. I was scared to death and did not know what was happening. We did not have the same experience as you, the paramedics and the doctor at the hospital were all very nice. She too had a CT scan that night and blood work. All was fine, but two weeks later she has an EEG. She was diagnosed with Seizure Disorder and has been taking 750mg of Depakote a day. She had only one more gran mal seizure before they got the meds adjusted. Now three years later she has been seizure free and is being weened off the meds. My daughter had an extreme growth spurt between 8 1/2 and 12. They think this may have caused the disorder. Has your daughter grown quite a bit in the last few months?

Kel

Caroline - posted on 07/22/2009

Hi Farrah I am new to this community, I am so sorry to hear about your daughter, I know how terrifing that can be. My son who is now 9yrs old had his 1st and only seizure in july 06.





My nieces were staying over and at about 11pm my daughter and 1 of my nieces came downstairs crying that Fionn was trying to scare them, that he was pretending he was dead. When I went upstairs Fionn was lying with his head on my other nieces lap, he was staring into space and making groaning noises.


I thought he was messing so I told him to give it over, my sister then half walked half carried him down stairs, he was sitting on her lap but i still couldnt get him to look at or respond to me. At that moment my dh came home and we realised that Fionn wasnt playing.


In our panic I didnt even think to call an ambulance dh carried him to the car and I sat in the back with him in my arms. On the way to the hospital he went into a full blown seizure. He was jerking in my arms and gurgling like he was drowning.





In the hospital he was seizing for 4 hrs they kept medicating him to stop the seizure but as soon as it wore off he would start seizing again. He stopped breathing from all of the medication and had to be ventilated. He was in intensive care for 48 hrs.





When he was sent down to the childrens ward they did every test imaginable on him but they all came back normal. He was put on 15mls of tegretol per day and he has just been wean off it because he has been seizure free since that one episode.





He has been doing well since but I am terrifed that it could happen again. I wish you and your little girl all the best "hugs"

Jill - posted on 07/22/2009

Hello,

My son, aged 10, was diagnosed just this past Feb with Grand Mal and petit mal seizure disorder. He also has migraines, insomnia and problems with asthma. Our adventure began in the middle of the night on Feb 5, 2009 when he woke me up accidentally while in the middle of a grand mal seizure! Due to his insomnia we were sleeping in our living room he on a mattress on the floor and me next to him up on the couch. I felt shaking like he was trying to get my attention only to wake up scared out of my mind when I saw that he was in a full blown seizure! He had a prenatal stroke and we were told that he would be prone to seizures but that if none happened before age 5 that we should be safe and never have to worry about them. How wrong they were!!! We called paramedics and rushed him to children's hospital in Birmingham. We were told that "anyone can have a seizure at some point in their life. He's okay, just take him home". I was appalled by that especially since I had given them my sons history.

The next day I started calling the local neurologists and was told it would be at least 3 months before a new patient appt was available. I called the neuro that I see for my migraines and she had an appt for him within 2 days!! She diagnosed him w/in the first 5 mins of his EEG and he was put on medication right away. The first two meds didn't work...changed his behavior and made him feel totally rotten. We were lucky enough to hear about an "epileptologist" that was 2 hours north of here. I made the appt, made the trip and have found the best doctor I could hope to find for my son. She has his seizures under control (haven't seen one yet!) and also told us about Epilepsy camp and gave me all the information that I would need to sign my son up for his first sleep away camp.

It has been one H#&& of a ride but we are in it for the long haul.

My advice to you, see if there is an "epileptologist" in your area and schedule an appt for both of your children. Also , look for a support group or talk to your doctors office about how to start one up. These two things have been my saving grace.

I wish you the best in this terrifying journey. May God grant you peace!

Jill

Laura - posted on 07/22/2009

My daughter, Samantha was having small seizures when I first tried to get her tested, no doctors would telt her it took me almost two years, and many changes in doctors to finally get one to test her. Within the next couple of years her seizure became not only was she having the small ones but she started having gran mal also. While at the doctor, during testing my other daughter, Danielle started having seizures. It is very stressful and know my youngest daughter, Makenzie is having seizures. It is difficult to stay positve, but you can do it. You can learn to deal with it, Sam was 18 months when I first tried to get her tested, she is now 20, Danielle is now 19 and having a baby of her own, Makenzie is 10. They all still have problems but are living a good life. Hang in there. Alot of the doctors stink, but there are good ones just don't settle.

User - posted on 07/21/2009

Hi , June of 2008, my daughter(then 5),Was laying on the floor one morning completely unresponsive with only shallow breaths. Caitlin was never ill a day in her life.

I had no idea what was happening . the emts took her to the Er. She had to be intibated as she had gone into respiratory failure. She was flown by helicopter to Pennstate Hershey medical center. Still having no idea what was going on I was informed she'd had a siezure. She stayed at Penn st. for a week every possible test was done. They have not found a reason for this episode. She was put on Valproic acid and sees a nuerologist bi- monthly. she has gone 13 months with no siezure activity. My husband and I alternate night ,so one of us sleeps in her bed with her everynight. It was a fluke thing that happend and you just don't know when it may happen again!

Cynthia - posted on 07/16/2009

Hello. My name is Cindie, and I am new to circle of moms. I have gone through somewhat the same thing as you Farrah. My son was 4 when he had his first seizure. I was preg with my 3rd child, and my son and daughter were sitting at the kitchen table scrapbooking. My son asked me for a new piece of paper, I handed it to him, and turned to walk in the livingroom. Just then I heard him yell (almost like a loud screech), and then he fell off the chair onto the floor, I thought because he is a little boy and he goofs off alot that he accidentally fell off the chair. I went over to him and asked him if he was ok. When I looked at him, his eyes were in the back of his head, his face was white as a ghost and he wasnt coherent. I screamed for my husband to call 911. When he came too he threw up. We went to the hospital, they did a AKG and a EEG they found nothing, he drew blood found nothing. They said sometimes it happens and if it happens again they would do further testing. I was in shock and not in a complete state of paranoia. I wouldnt let him out of my sight. I told him the next time he feels like he might "pass out" thats what he calls it, I said lay down on the floor so you dont get hurt. A week later he was in the livingroom coloring and he said im going to pass out, he layed down on the floor and had another seizure. this time he was moving back n forth, his eyes rolled in his head again, and I called 911, when he came too he threw up. When the paramedics came they said they could tell he had seizure and that his blood pressure was low. This time he went to hospital and they wanted to test his blood to check for vitamin definciency. Well I know my son, and I knew that wasnt the case he eats EVERYTHING. the results came back fine and they referred him to a neurologist. I took him to a neurologist who did some testing, and said that I needed to watch him and if there was another they would do a brain scan. (watch him are you serious, like I will leave him alone for 2 mins) Then a few days later he was swimming with me and my sister and he started to go limp, I screamed to my sister that I thought he was going to have a seizure because his face was turning white, we got him out of the water and dried him off and after a few mins later he said he felt better. I think we dodged the bullet that time. Well about a week later, we were at an appt. He was standing next to me, I was sitting in a chair. He bumped me, I thought he did it on accident, when I turned to look at him, he fell into my lap. His was completely frozen. His legs, his arms, his hands were clenched. I started screaming for someone to call 911. He didnt come out of it quickly this time as he did other times. He was not responsive but he was breathing. An ambulance came and took him to the hospital. He didnt speak til he was at the hospital. They said he had a gran mal seizure, and now I needed to start taking seizure precautions. They said they now beleived he may have epilepsy. They said the next one would be worse then this one. They did a brain scan and found nothing. Heres the catch: That was 20 months ago. He has not had another one since. I beleive there were a few times that he came close, a couple times he would tell me he didnt feel good and he thought he might "pass out". I still am worried about him, I still watch him, he is 6 now. Has anyone ever had this happen ? A lapse ?

Lisa - posted on 07/16/2009

hi im new to this too . my child has only been having seizers since the start of this year . she seem to have learning difficultys too . i dont know if its the medicine . need advice !!!

Amanda - posted on 07/15/2009

Our 7 year old, now 8, had her first seizure a year ago. It started when she was home from school sick with 5th disease and I had her in her room for some rest when I heard screaming. I went up and she was curled up on her bed, eyes open and screaming. I had no idea what was going on. I tried to snap her out of it and she seemed totally out of it. She finally came around to where she knew something was happening, but she didn't have full function of herself. It happened again 2 nights later and again the night after that. We thought it might be night terrors, but on the last night, my husband went in and said that she had a full on seizure. He took her to the ER and they did some tests and said she was okay. We went to see her Dr. and he said he didn't see anything wrong with her but gave us the number to a neurologist if we wanted to look into it further. We made an appointment, but it was a month out, but then one morning she came up to me with her mouth twitching without her control. She had been playing video games, so I thought it may have been a side effect of the games, so I had her stop playing. But it happened again 2 days later when she hadn't been playing. So I called the neurologist and begged to come in sooner, got an appointment and went in. They did the MRI and EEG and found she had epileptic tendencies about 10 times a minute. So she is now on Keppra. It makes her mean so she is on vitamin B6 as well. It helps, but not all the way. She has had one full seizure since then, this past Jan., so they upped her meds. The Dr. said that it is a type of epilepsy that she will probably outgrow by the time she is past puberty. I hope she is right. But like you, it was out of the blue and there is no history of seizures in our families. I am still a little freaked out about it. I always forget that it is something I should probably tell people when she goes to their houses and I had to let the school know. We also got a video monitor for her room so that we can keep an eye on her at night since both of her full seizures happened at either late night or early morning. But, we are getting used to it. Good luck!

Patti - posted on 07/14/2009

Hi! my name is Patti. I have now a 10 year old boy that at the age of 7 close to 8 went through the same thing your daughter did minus the injuries. We went through weeks of taken him to dr and no one could tells us what was going on. I finally got help from all things his ADHD Dr. and she set up for a nerolgist. He has gran mau seizures. Most of his activity is at night. I went through weeks of no sleep after he had his. They put him on 500mg of keppra twice a day for his. They tried to change his meds once and he had such a bad recation he looked like he had the measles. I don't think I have heard of the med Lamictal. But I do hope the best for you with this. It's rough. It is amazing how drs can be about seizures and just act like there is nothing. My sons first seizure last 45 mins long. he would start coming out and then go into it again. and the dr still sent him home with no testing at all only blood work. The EMT in out town was very upset cuz they even knew what it was. The neruolist said we were lucky. that this is the worse seizure they can have. and usually if it last that long well let just say most times the out come isn't very good. I completely understand were you are coming from.

Laura - posted on 07/14/2009

Farrah,
Yes, one aunt. I watch my boys sleeping a lot, too. ;-(
Laura

Farrah - posted on 07/13/2009

Thanks for your support and stories Juli and Loretta. It IS nice having other moms who can share stories with me. Loretta, I watch her sleep a lot. She is probably getting tired of me following her around...lol.
I will be keeping you all in my thoughts.
BIG HUGS!!!!

Farrah

Loretta - posted on 07/13/2009

Hi Farrah, I also have two children who have seizures. My oldest son, who is now 20, and my baby, who is 8. Terrell , my oldest, had his first seizure at age 12, in a big chain grocery store, while I was due any day with my youngest son. He was fine all day and never had any symptoms, just an ordinary child shopping with his mom. I heard a bang, that was when he fell and knocked cans of food over, I turned around and seen my son on the floor, kind of like jerking. I ran to him and bent down to see what was happening. I had no idea!! I yelled out for help and was so fortunate to have an ambulance attendant and a nurse who were doing their shopping that day. They came to help me and told me he was having a seizure. Somebody called the ambulance and they came within minutes. They took us to the hospital, where they checked him out, and then sent us home. I was so terrified!! I practically stayed up all night watching him, praying so hard. I went into labour that night. But I stayed by his side right till my pains were minutes apart. I am blessed to have a super supportive family, so they took my son the next day to his Cat scan, MRI and an EEG. They diagnosed him with Epilepsy and put him on Dilantin. I had my baby son the very next day. Ironically, my baby son, also has seizures. Only he has them in his sleep, let me tell you, i cannot count the nights where I sit by his bed watching him sleep and praying he has a good sleep. I will tell that story another time as this one has kinda drained me lol. Thanks to all for listening.

Julie - posted on 07/13/2009

Farrah, my daughter Leah had 2 grand mals back to back in October of this year. She had a seizure back when she was 5 but they said it was febrile and there was a 99.5% chance she would never have one again and then 3 years later this happened. She had a high fever and I took her to the pediatrician because I couldn't break it, 103 for almost 24 hours, anyhow she had the 1st one waiting in the room for the doctor. I flung open the door and yelled for the dr. she came running but paniced and started yelling her name. Something took over me when I saw she wasn't handling it and I yelled for someone to call 911. It felt like forever before ems got there and I also started cpr because I couldn't feel a pulse and she was dark blue. She seemed better, disorientated but was somewhat responding, the EMS guys were acting very laid back about it which was ticking me off and then once we were in the ambulance she started to seize again and I had to bag her while he gave her an injection of valium. They hooked her up to a heart monitor and her pulse was 240. I thought she was going to go into cardiac arrest but apparently that's how the body responds sometimes to a seizure. I can honestly say I have never been so scared in my life!!! I felt like I was watching my daughter die before my eyes. The doctor at the emergency room came to me and wanted every detail and I felt like my brain was mush. They ended up doing a spinal tap, cat scans, EEG's, the whole nine yards. They kept her for 4 days because she had such a bad virus and kept spiking a fever. They never did figure out the virus but started her on seizure meds right away. We have been with a great pediatric neurologist since then. She has been diagnosed as having epilepsy which is enduced by body temperature. I guess there is a percentage of kids who get this, some grow out of it and some don't. The frustrating part for us has been the medications. We are on our 5th one because of reactions to them, rashes, mood swings etc. We pray every day that this new one will be the one that works for her. It is sooo hard to watch them go through all this, I wish everyday that it was me and not her. It is so hard to get that day out of my head and I still don't sleep well at night but I do try and stay positive for her and I tell her that we need to be thankful it is not cancer and that one day, as an adult she could reach out to others with this and that it will make her a stronger women but believe me there are days I feel like I don't really believe that myself. I will keep you in my thoughts and prayers and know that you have a friends out there who understands even if we don't know each other we are joined by a difficult situation.
Take care & best wishes at your appointment, remember that we are our child's best advocate and if you don't agree with a medication or a suggestion by the doctor than let them know! Oh, and ask them about diastat in valium form. It is an injectable valium suppository which after 3 minutes of a seizure can be given to stop the seizure. It goes everywhere with us, even kept at school where we have educated people there to use it, it makes us all feel safer. It has actually saved peoples lives with epilepsy. If I can help anymore just let me know.
Julie

Farrah - posted on 07/13/2009

Thanks for your reply and prayers Laura. Just curious, but is there any history of seizure disorders in your family (beside your children)....because there aren't any in our sides of the family that we can think of. Just my two kids...

Laura - posted on 07/13/2009

I'm so sorry, Farrah! I have two children with seizure disorders, too. My boys were littler, but I do understand how if feels to be watching one child constantly only to be shocked when the "healthy" child goes into a grand-mal.
You are in my prayers that your children will be taken care of by GOOD doctors.
Much love,
Laura

Farrah - posted on 07/12/2009

Thanks for your reply Heather :)

Living in a rural area sux at times. I just found out that the neurologist called the same day she had her EEG wanting our family doc to put her on some meds and make an appointment to see him right away...I never knew the results until three weeks later and we can't get in to see the neuro for two more weeks...SHEEEESH.

Good luck with your little guy!!

Heather - posted on 07/10/2009

Holy Crap! I'm honestly amazed at some of the dr's out there. They're clearly in it for the money and not to help ppl. We've run into a few of those. I'm so sorry you had such a traumatic event. I can sympathize, my son's 1st sz was 3 hrs long. Didn't recognize is as a sz b/x he would scream and do limp- it was very early am, thought he was screaming while sleeping b/c of gas. got u 45 min later when it didn't stop and realized he was unresponsive. Headed into the ER and it took them a long time to get him under control. They knew right away and sent us tp the regional pedi ICU where we had ct scans and EEG's to ck for damage/sz activity. He had bloody drool from biting his tongue i believe. Upon retrospect, we realized he'd been having sz since he was 6mths old, but they were so short we thought they were gas screams. He was 16mths when this happened. As for the Dr, call the hospital administrator/president and report the dr. That was unacceptable. I've found that small, local hospitals don't handle special needs/sz kids well.