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Absence Seizures

Fri, 01/23/2015 - 15:28

Hi, my 6 year old daughter was diagnosed 13 months ago with absence seizues.  We've tried Keppra, Lamictal, Zonegran, Onfi, and are now on Depakote.  So far nothing seems to be working for her.  When she was first diagnosed we were told this is a very easy form of epilepsy to treat.  Has anyone else struggled with treatment for absence seizures?

Comments

I would like to explain that

Submitted by just_joe on Fri, 2015-01-23 - 19:16
I would like to explain that medications do work.However getting the dosages set takes time.Which means dosages need to be raised or lowered before taking a person off of it. It takes about 2 months to get the levels set in the body because the body needs to get used to it. If she was on one then switched to another then she has 2 medications which the body will fight against and the first medication levels will take about a month to leave her body completely. Basically I am saying it takes time for medication levels to get set in her body. Once set if she is still having seizures then adjustments can be made by raising and lowering the dosageAll of that could take 3-4 months.which would show me she was taken off some medications without raising or lowering the dosages to see if it will work. Medications for epilepsy are not one size fits all medications. One person can be treated with low dosages. When I was diagnosed I was on the highest levels the companies would put a person on. My body took it and the number of seizures I was having were reduced. I know it is hard when it is a young child and her harents want her to be normal. I also know that a medication that works for one person may not work for the next. Dosages are just like the medications. It takes time and trial and error to get them set. My mother wanted my seizures stopped. She wanted me to be like my brothers and sister. Normal.

I forgot to tell you to start

Submitted by Anonymous on Sat, 2015-01-24 - 10:18
I forgot to tell you to start a My Epilepsy Diary, You can wiath the video which tells you about it. The note pad in it can be where to put what is happening in her seizures and what she had been doing. I list the length of time in mine and the time to get back to normal. You have the ability to give her doctor a way to bring it up and if he does he can look at the infornation. He can bring up the graphs and other things which can help him with medications, dosages and other procedures. The idary can be found on this site under the GET HELP section.  They are making changes on it but I think you can still get into it. With every visit I had for the last 20 years I had questions for Doc to answer. Which means for every question he asked me I had an answer and a question for him. I wrote the questions down at different times.  IF she is to take medications 2 times a day when should those times be?? If she gets ill for any reason can the illness effect the medication she takes and possiably have a seizure?  Simple questions like those can help you understand how things work. I know the answer to both. Dosages should be taken 12 hours apart unless otherwise told by the neurologist. if taken at 8 am and 10 pm the 2 hour delay can cause breakthru seizures.  Illness can effect emdications because the body is battling the illness which drains energy and I know also because I have been ill and had more seizures during those times. Ask her neurologist any question you have. You would be surprised to know some of hte questions I have asked any of my neurologists. Some sounded dippy but I got an answer. They understood my questions and I got information . I have been with the same group of neurologists since 1970. One retired the next took his place. I think I am now on the 6-8th. And he would answer some of my questions in calls I made in the 1980's. In my case If I had a question at times I would call because phone calls do get answered and there is no charge for them. If I had a questions and I had an appointment in a month or so I would ask it during the visit unless I was having more seizures. I hope this helps. Joe 

I don't want to be rude on

Submitted by Anonymous on Mon, 2015-01-26 - 15:08
I don't want to be rude on someone else's post but I don't know how else to try and ask to talk to you in private. I am new to the site. I'm so sorry. 

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