drop siezure

Alexis - posted on 02/12/2009 ( 9 moms have responded )

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my son had his first real drop siezure on tuesday, it was so fast i didnt know what happened at first,he normally has grand mal siezures, or febrile convultions, he has had a couple of absent siezures but none of those since he has been properly medicated... anyway, he ran inside closed the sliding door and dropped to the ground... i looked over and saw him fall, i went over to him and saw the fists clench and the eyes roll back and that was it... he convolted, he did it again in the emergency dept in our local hospital about 3 hrs later.....i have had to adjust his medication and today he seems ok....

you know its amazing how you can go from having one type of siezure to having a couple of different types... makes me wonder if he has had any that i have just brushed off as him just falling over..... it worries me.... i mean i can handle the constant having to keep one ear and eye open 24/7 and the fact that this disorder is non predictable but i hate having to deal with the ex to arrange my other son to be looked after whilst i am in hospital....

one day you are typing away on your comp and the next min you are calling an ambulance and having to rely on your ex to help you out.....

i hate it, i dont have any family near me and i only have a handfull of friends, i dont really know my neighbours that well to ask for help.......

i feel like i am doing this totally on my own, and it is hard... bloody hard.....

atleast my son is ok... he is loved and he feels comfortable in our home.... i just need to try and work out a way of getting him to realise that hiis head may feel funny leading up to a siezure and to get him to try and relay that to me so i can help prepare him for it.......

i know he is only 3 1/2 yrs and i dont know everything their is to know about epilepsy but he should know that his head feels different at times.....

has anyone got any suggestiong on how to have that type of communication with a child so young.....

9 Comments

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Umar - posted on 08/06/2010

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nice to hear from u. i am tryiong to take one day at a time but sumtimes it is so difficult that i just wish this was all just a dream but it isnt its life. i luv her to bits but sumtimes wen i look at her and think of her problems it breaks my heart and at times i do fall into peices bcuz my emotions get the better of me. hubby is very supportive and sumtimes says that i am mad, but i think he just says to make me feel better and tries to hide his feelings but then thats men 4 u always hard to show any emotions or talk about their feelings. i think if it wasnt for my husband and the amount he helps with her i wud hav lost the plot ages ago. i find this site very helpful bcuz i can express exactly how i feel and knowing that there are others who r goin threw the same experiences as myself who understand me. await to hear from u

Lisa - posted on 08/05/2010

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I completely understand how you feel. I think most of the moms on this conversation site understand. I'm glad I found this site thru FB. It helps to talk to other moms going thru the same or worse situations. Just remember that "All things happen for a reason" (we're only human and we don't understand why exactly!) and that you must be a very strong woman/mother because "God only gives us as much as we can handle" so it says :) Hang in there ~ she needs you! You're doing a great job! One day at a time :)

Umar - posted on 08/05/2010

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hi my daughter who is 22mths old has had siezures sinc she was 8mths old. i know exactly how you feel bcuz it is 1 of those things which r so unpredictable. my daughter has tonic myclonic sort of siezures where she makes a gruntin noise and then she is unresponsive. eyes roll to the right but her eyes r wide open. she gets a rise in temp from nowhere. there hav been times where she has been moments away from goin into ICU and quite a few times in high dependency unit bcuz she was sedated and needed monitoring. at 1 point where could not bear it anymore that i wished that she gave up on life and i wud tell docs not resusitate bcuz it is so hard wen ur child is laying there so helpless with around 4 doctors who givin all the possible drugs to her. my aughter also suffers with GDD aswell. you might think wat sort of a mother am i to wish my own child to die but wen u hav had to watch over and over again and is unable to take the pain away it is hard to just watch your child suffer the way they do. she has had seizures lastin upto 2hrs. i wish no parent to go thru that. hope to get a reply from you.

Lisa - posted on 08/02/2010

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Wow I'm so sorry what you're going thru. You are handling it all basically all on your own. My daughter is 12 and just started having myoclonic seizures in June, so I'm still new and learning about all of this. I know how you feel being "on guard" watching 24/7. So far it only happens at night or early morning (thank goodness!) but you never know. I haven't started her on any meds yet because of all the side effects. We've been doing Upper Cervical Correction with a chiropractor and so far it's helping her seizures lessen. She hasn't been having them everyday and it's wonderful. I also spoke to a nutritionist that specializes in homeopathic and natural treatments. We've been watching her diet and added some natural supplements. As his mother you are his only advocate, do your research and take one day at a time. That's what I'm doing. Good luck :)

User - posted on 02/19/2009

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Well I guess I am going to be switching she had at least 3 drop seizures yesterday. I am going to wait to see if she is coming down with something but she didn't have a feaver or anything but who knows the dr always asks me was she sick and normally my answer is no but the next day she is, I get the impression they assume first an illness then the seizures but not my little one!



 

Alexis - posted on 02/17/2009

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hi angela,

it is a hard decission to make weather or not to change medication... i tried to change medications with jacob... he was reacting and going hypo on the epilim, so we tried to change to tegratol, but within 3 days he came out in a rash. so i had to stop the tegratol and lower the dose of epilim and introduce lamactal.... so far so good..

i suppose its trial and error... look at the side affects, look at whats happening now and weigh the two up...... and you have to have trust in your doctor... im fortunate that i can discuss anything with my doctor and he will listen....

i am also a single mum and yes it is hard when you do become involved again.. my new partner never really understood why i would watch and jump the way that i do with jacob until one day he saw jacob have a siezure.... it scared to poop out of him... he is now very interested in the condition and is more understanding... but not all men are like him....

i wish you well with your decission...

alexis

User - posted on 02/17/2009

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I totally can feel for both of you! My daugter has had seizures for most of her life, at first we were not quite sure what we were seeing and then I called 911 2x because she was unresponsive and turned blue trouble was she was normal by the time they got there. Kiana has an added bonous to her seizures, which are normally petit mal she has had about 10 Grand mal, but most are petit mal, anyway she will seize, sleep for about 10 minutes wake up and seize again she will do this about 3 times and then you can count on the fact that she will projectile vomit, on one of our visits to the hospital the nurse didn't believe me but 3 seizures and the bomb went off! When she was first diagnosed I told the Dr. I thought that after adding the meds I thought Kiana's seizures actually mutated. She had never had a Grand mal until after this, she had never had drop or absent seizures at least I hadn't really noticed but all of the sudden there they were. Kiana was on Phenobarbotal for a short time then she was quicly switched to tryleptol and clazopan together ( forgive the spelling) . We have her tryleptol levels tested ever so often because this has been found to be toxic to her system and we have had to lower her dose. Last  year she had to have stitches in her chin because the meds made her fall, it effects her balance. Right now the Dr. is waiting on me to decide weather or not to change her tryleptol to Depoco she has had several drop seizures since Christmas but she was exausted at each one of these but I am just not sure what to do, about switching I mean other then the few seizures she has had compaired to the 30 to 40 a day she had when this all started life is pretty good and I am scarred to change things and rock the boat.



I believe this is one of the hardest things I will ever have to go through as a parent !  I am a single mom so I don't have an ex to deal with her but I do know how hard it is for everyone you are involved with when you have a child with such issues.

Alexis - posted on 02/12/2009

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its nice to know that im not the only one having to deal with this.... my son was originally on epilum, my original doctor told me that at the age of 18 months he was also ADD.... i changed doctors, looked into the side affects and with the help of my new doctor we worked out that he was actually reacting to the medication.... we dropped his dose and introduced lamactal and he hasnt looked back.... but my doctor and i are discussing increasing the epilim a little... with him growing and not increasing the dose for a while the levels have actually dropped in his system... hopefully through increasint the lamactal he wont have any more siezures for a while... but if he does then we will have to fiddle with the epilim....(which we really dont want to do)

when you say make him a hat... how would you suggest its made... i tried to get him to keep his bike helmet on the other day when he was outside but he didnt leave it on for long.... i have ordered a teddies helmet for his teddy as he tried to put his helmet on his teddy... so cute lol.....

i also have no idea as to where the epilepsy came from... there is no record of anyone in either family.... oh well. nothing you can do about it just live with it....

the whole ex thing gets me down at times.... but unfortunatly with my sons condition i have to deal with him and have him in my life more than you would normally have an ex in your life lol if that makes sence....

anyway thankyou.....

Angelique - posted on 02/12/2009

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oH MY! i understand. My son developed Doose Disease out of Literally NO WHERE! My son says that his head surts.. he starts yelling No No No nono NO! And then cries for a while. He has three types of seizures PLUS the drop episodes. His eyes don't roll during.. right now he just drops his head.. falling forwards or over to the side. Some parents have told me that their older children have said that their head feels like it is filling up with pressure before a seizure... very interresting. I also have to deal with my ex and this whole thing. To give yourself some piece of mind.. I would suggest that you make him areally cool padded hat that  he WANTS to wear... like his favorite Disney character or something... this way if he falls while he is out of your reach.. he will be a bit more protected. Also my doctor told me that the seizures aren't what hurts them.. so if he is safe while seizing, he will be okay as long as it's not more than 5 minutes. My son has over 50 seizures a day right now.. myoclonic, general focal, and absence. He has been having a lot of side effects to the meds... he is on Topomax and depakote. My son is also 3 1/2.. what meds is your son taking?

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