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user banned 2 kids; Bat Cave, North Carolina 64587 posts
Jan 29th '13

<blockquote><b>Quoting 36-24-36OnlyIfshes5-3:</b>" <blockquote><b>Quoting Mayhem.:</b>" <blockquote><b>Quoting P3RvYmCp3rv:</b>" ... [snip!] ... wish this on anyone but its the crsppy hand you're dealt, no choice but to play em regardless. Unfortunately such is life."</blockquote>



Ding ding ding.

user banned 4 kids; Mueang Phuket, Thailand 30487 posts
Jan 29th '13
Quoting P3RvYmCp3rv:" And I'm sure if weaned off of the meds and they were making a difference she would have her put back on them. I'm sure she isn't that mother that just doesn't give a f**k. "



The thing about my daughter is the meds will help, at first, hen after a few months her seizures start getting more and more often.

she used to have hundreds a day on this one medicine, and they finally switched it and it dropped to about 75 seizures a day, and then they added another one.. and she is around 30 a day, id say 1 or more an hour. SOmetimes she gets clusters with like 4 in a row and then none for a few hours.
every EEG she has ever had has shown seizure activity along with other things like brain slowing and stuff. I feel like it sometiems help, and then stops helping and her seizures increase. obviously if it helped her I would keep her on them. I just want her to be normal. and be able to play with other kids without tehm staring at her and calling her weird becuase she wont talk. im just over it.

people take their normal kids for granted and I would literally give her my life if i knew she could be normal, and have kids and a family. just sucks... thats all, im just down on it today. nomrally it doesnt bother me, but with the fear of cancer lingering, im just so stressed out.

user banned 2 kids; Bat Cave, North Carolina 64587 posts
Jan 29th '13

<blockquote><b>Quoting Legendary Yermom:</b>" <blockquote><b>Quoting ☮ Phuket:</b>" conspiracy theroy? seriously??? this ... [snip!] ... it, i cant imagine what im doing to my poor baby. "</blockquote> Lol. Did you read past the first sentence?"</blockquote>



THANK YOU :lol:

user banned 3 kids; Portland, Michigan 15675 posts
Jan 29th '13
Quoting ☮ Phuket:" The thing about my daughter is the meds will help, at first, hen after a few months her seizures ... [snip!] ... all, im just down on it today. nomrally it doesnt bother me, but with the fear of cancer lingering, im just so stressed out."


30 seizures a day?! :shock:



I'd have a heart attack if I had to watch my kids go through that.

user banned 4 kids; Mueang Phuket, Thailand 30487 posts
Jan 29th '13
Quoting 36-24-36OnlyIfshes5-3:" <blockquote><b>Quoting Mayhem.:</b>" <blockquote><b>Quoting P3RvYmCp3rv:</b>" ... [snip!] ... wish this on anyone but its the crsppy hand you're dealt, no choice but to play em regardless. Unfortunately such is life."


sometimes they do help.. but you know what? my daughter had a nuero in ohio that had her on the WRONG types of drugs, depakote which made her so f**king sick it wasnt funny.
i move and change nueros.. and she is suprised at how SUTPID the other doctor was, she was on medicien for different types of seizures than she was having. Not all doctors do it for the right reason, i had to fight hadn and foot for other tests.. and also for an EEG to prove how many seizures she wreally was having because they said i was exagherating.. funny when they got the results they shut the f**k up becuase she was haivng more than twice as many seizures as i told them originally.. just cuz a "doctor" says something, doesnt mean its right.


i know they help some people and thats great.. i just wish i didnt have to give her 3 different tpyes and nothing changes.. we added a new medicine a few montsh ago.. still having seizures.. still having the same amount as before. so why is she still on it? if nothing is changing..



user banned 4 kids; Mueang Phuket, Thailand 30487 posts
Jan 29th '13
Quoting I♥MyTots:" 30 seizures a day?! :shock: I'd have a heart attack if I had to watch my kids go through that."


thats nothing, she used have 10 or more an hour.

Ronnie RadKat 4 kids; Arizona 22962 posts
Jan 29th '13

<blockquote><b>Quoting ☮ Phuket:</b>" The thing about my daughter is the meds will help, at first, hen after a few months her seizures ... [snip!] ... all, im just down on it today. nomrally it doesnt bother me, but with the fear of cancer lingering, im just so stressed out."</blockquote>



This something you're going to have to learn to accept, she's is NEVER going to be like other kids. I know that sounds harsh but it's the truth. It's a grieving process when you begin to accept the reality of her condition because you have to really let go if a lot of the ideas and hopes you've held onto for a long time, it's almost like losing a child because in a sense you are but you've got to accept it. Have you looked into counseling at all? I think you could really benefit from it. I'm sorry you're having a hard time, I know it's hard.

user banned 2 kids; Bat Cave, North Carolina 64587 posts
Jan 29th '13

<blockquote><b>Quoting ☮ Phuket:</b>" sometimes they do help.. but you know what? my daughter had a nuero in ohio that had her on the WRONG ... [snip!] ... still having seizures.. still having the same amount as before. so why is she still on it? if nothing is changing.. "</blockquote>




Pretty sure I'm on ignore but whatev :lol:



I never said all doctors have the best intentions. I never said every doctor is right. I straight up said to talk to more than one. I never even said to keep her on the meds. God forbid someone who occasionally points out how stupid you are offers you actual advice

user banned 4 kids; Mueang Phuket, Thailand 30487 posts
Jan 29th '13
Quoting 36-24-36OnlyIfshes5-3:" <blockquote><b>Quoting ☮ Phuket:</b>" The thing about my daughter is the meds ... [snip!] ... looked into counseling at all? I think you could really benefit from it. I'm sorry you're having a hard time, I know it's hard."


i know, i just cant accept it. I just want my baby to be like my other babies.. and talk and play and do things and she wont. she misses out on so much because of how she is... im sure one day I will excpet it, but i keep hoping that tomorrow she will wake up and be normal...



user banned 4 kids; Mueang Phuket, Thailand 30487 posts
Jan 29th '13
Quoting Mayhem.:" <blockquote><b>Quoting ☮ Phuket:</b>" sometimes they do help.. but you know ... [snip!] ... even said to keep her on the meds. God forbid someone who occasionally points out how stupid you are offers you actual advice"


im stupid for what? your advice was not much of advice... telling me to do if for the "right" reasons.. like who the f**k are you to tell me whats RIGHT when it comes to MY kid.
ive seen plenty of doctors thanks for your non-advice and your bad attitude and name calling. im far from stupid when it comces to my daughter and her problems.

user banned 2 kids; Bat Cave, North Carolina 64587 posts
Jan 29th '13

<blockquote><b>Quoting ☮ Phuket:</b>" im stupid for what? your advice was not much of advice... telling me to do if for the "right" reasons.. ... [snip!] ... for your non-advice and your bad attitude and name calling. im far from stupid when it comces to my daughter and her problems."</blockquote>




Again, I never said you didn't. I actually said the opposite. :idea:



I think you're a fool. And you know it. So you chose to take legitimate advice as bitchiness. That's not my problem.

user banned 4 kids; Mueang Phuket, Thailand 30487 posts
Jan 29th '13
Quoting Mayhem.:" <blockquote><b>Quoting ☮ Phuket:</b>" im stupid for what? your advice was not ... [snip!] ... :idea: I think you're a fool. And you know it. So you chose to take legitimate advice as bitchiness. That's not my problem."


im not a "fool" but thanks again.. .for nothing.

user banned 4 kids; Mueang Phuket, Thailand 30487 posts
Jan 29th '13

and not that anyone cares, but my daughters tests were abnormal and now we have to see a sepcialist and do more testing to see why her CBC is so off.. aweswome, now my kid with epilepsy and a gene deletion is gonna have cancer. i knew her symtoms were off.

user banned 4 kids; Mueang Phuket, Thailand 30487 posts
Jan 29th '13
Quoting LEGENDARY JAS ♥:" OP, I know you're frustrated (and defensive) because you usually don't go off on people like that. I've ... [snip!] ... you with that. You don't want to stop her medication then have something go wrong, heaven forbid. It will be on your shoulders."


i would never just stop cold turkey. she has been weaned on and off differnet meds for years, i know the risk of just taking her off. yes im deffensive of my duaghter who is probably dying now..

thanks everyone for your advice, im sorry im being a f**king b***h but now i just have to go cuddle her after getting off the phone with her doctor. im so over this, all i want is a healthy kid and i have a*****es calling me stupid and a fool for wanting to do whats best for my sick kid.



Piecey. 4 kids; Worms, RP, Germany 68573 posts
Jan 29th '13
Quoting ☮ Phuket:" and not that anyone cares, but my daughters tests were abnormal and now we have to see a sepcialist and ... [snip!] ... her CBC is so off.. aweswome, now my kid with epilepsy and a gene deletion is gonna have cancer. i knew her symtoms were off."


that seems like quite the leap...to cancer. why do you think that's what it'll be? i hope it's not.