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dragonfly920
New Member


Date Joined May 2005
Total Posts : 3
   Posted 5/12/2005 10:49 AM (GMT -7)   
I came across this site while searching for something else, but am very glad I found this.
 
My daughter is 5 and was Dx in November of last year. She is doing okay, with some days being worse than others. Currently she takes 750 mg of Depakote and 250 mg of Zerontin daily. She only has a couple seizures a week now, which is much better than the 10 a day at first.
 
At this moment I am feeling sad for her. sad The neds that she takes to make her life easier, make her soo tired. She can sleep for 12 1/2 hours at night and have trouble getting through 3 hours of school. I am just unsure of whta to do. According to her Dr. (she is seeing an adult neurologist, because the closet pediatric dr. is 60 miles away) what they are doing is taking medication meant for adults and lowering then to her weight. So to me that is his way of saying "we are experimenting with your child" Great, but i really have no other option.
 
Thanks for reading!!

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 5/12/2005 1:17 PM (GMT -7)   
HI Dragon fly, I am so sorry your little girl is having so much affect from the meds that are hard to deal with for her.


it might be worth taking that long trip to a pede neuro. It can be better sometimes in managing a child's epilepsy than an adult doctor can......

Kids do take Depakote and Zarontin for sure. Most meds are tested on adults and not on kids prior to be allowed for kids.

dragonfly920
New Member


Date Joined May 2005
Total Posts : 3
   Posted 5/12/2005 2:57 PM (GMT -7)   

Thanks for the replies. I really would love to do anything possible to help her, as any parent would. The only problem with traveling the 60 miles, is I can't drive. So my options are whatever is close enough by bus or taxi. Her Dr. suggested a study in Madison (WI), which is great. I guess they provide transportaion down there, but I don't know if that is for the patient and a parent only or what the details are yet.

What took me by surprise is all the changing of meds that has to happen in order to get the right ones and the right dosage. I am not complaining, but to pay 40 bucks for a drug, have her take it for a week and then spend another 40 because that didn't work so well gets old. I just thought that this would be easier for some reason.  


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 5/12/2005 7:04 PM (GMT -7)   
Yes, it is really hard when meds change and you have just paid out for them. YOu can look into some drig programs that help you pay for them if this is a problem or ask the neuro for samples when starting a new one....


Transportation is hard. I would call around and see what the details are about the other place. Hoping you can work things out. Not driving does make it really hard, I am sure and the cost of taxi is high....
Do you have any friends who could help you get there./ Maybe trade off babysitting for it or something...

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 5/12/2005 7:38 PM (GMT -7)   
:-)  Hello and welcome to the forum.  THe med change game is no fun.  I really hope you can find a good neuro so she get great treatment.  I hope they can find a drug/dosage that gives her control.  IT is hard and frustrating.  Keep us updated.  Take care, Tracy
 


goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 5/13/2005 8:07 AM (GMT -7)   

Hi dragonfly-  welcome to the forum.  so sorry you and your little girl have to go thru so much frustration and have to deal with so much.  The transportation thing is a big issue.  Have you approached her neuro about maybe getting a consultation from a pediatric neuro and then the neuro can keep in touch by phone for fine tuning the meds so you don't have to go back and forth the 60 miles? 

 It's a difficult situation. You definitely need all the support you can get.  Make sure you feel comfortable talking to her neuro- that's half the battle.  Good communication is a must.  Good Luck.  Come back anytime.    Glenda :-)


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


dragonfly920
New Member


Date Joined May 2005
Total Posts : 3
   Posted 5/16/2005 4:58 AM (GMT -7)   
We live in the middle of Wisconsin. So Marshfield where the nearest ped dr, is is a 59 mile drive, and I think it takes about 3 hours to get to Madison where this study is supposed to be.

JayJ
Regular Member


Date Joined Sep 2004
Total Posts : 26
   Posted 5/16/2005 9:08 PM (GMT -7)   
Hi Dragonfly, I live in Wisconsin too. I live in SE WI. I know the Marshfield Clinic and know that they are very well respected. I never dealt with them but my grandparents had all thier specialists there. I've been to Madison. Not to the epilepsy clinic but to vasvular surgery. I had very good experiences with them. I know the med problem. I think I've taken all the AEDs avalible and still not controlled. I will pray that your daughter does well and I will pray for you too. Jeff
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