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I need some serious opinions about my 5 yr. olds medication
Thu, 04/06/2006 - 18:36Topic: Parents & Caregivers
Hi all,
I have posted before, but I'll give a brief summary here because I am so frustrated right now and I really need opinions.
Bronwyn started having seizures on Feb. 2nd. That day she had 4 of them and it has only gotten worse since then. Every day, all day....seizures. They are either partial-focal or complex-partial, take your pick, I've heard both. She has left temporal lobe epilepsy, but I've heard maybe frontal lobe too.
She's had 2 hospital stays, EEG, video EEG, MRI and has tried Triliptal, Topamax, Phenobarb., and Keppra. Nothing works. Today we saw an Epileptologist and got all the options. I knew them all anyway, so this was just repeat info. The next step would be try another med (perhaps Zonegram) or get the VNS. We can't do Keto diet, we just can't.
I've run out of options as far as my job. After 2 months off work, I have to return or lose my job, house, etc. And Bronwyn has to return to her all-day Kindergarten. I've run out of patience. I've run out hope. She just had her 13th drop and jerk seizure today while I was on the phone with the pharmacy who was telling me my insurance company won't refill her Keppra until Saturday regardless of doctor's orders to increase the dosage.
So, what do I do? I am seriously considering stopping any and all medicine. Why bother anyway? They tell me her seizures don't cause her brain any damage. And the meds don't work. So why give her any medicine at all? I just wish I had more time to stay home and observe her off meds, but I have to return to work on Monday.
Has anyone taken their child off all meds? What could happen? Today the doctor said "Oh, we don't want to do that." But WHY NOT? The meds don't do anything and her brain is in no danger. Please....someone give me viable arguments pro or con about this.
Thank you so much for your help!
PJ
Comments
Re: I need some serious opinions about my 5 yr. olds medication
Submitted by niksmom on Fri, 2006-04-07 - 15:35
PJ, I am so sorry to hear all that you are going through and how incredibly frustrating it is. While I don't have any specific thoughts to offer on the issue of discontinuing your daughter's meds, I do have some suggestions that might help you get not only some more answers/info but also some additional support.
You didn't mention if the time off from work was done using sick and vacation time or not. If so, look into whether or not you are eligible to take advantage of the Family Medical Leave Act (see this sight for more info: www.dol.gov/elaws/fmla.htm or contact your state department of labor.) In some states,there are additional laws enacted that allow a parent to take additional time off as well.
Can you enlist the assistance of your employer's HR department? I know one company I worked for had a confidential third-party service that was free for all employees that could help in situations such as yours. It is definitely worth looking into!
Does your insurance company have a case management department? If so, I cannot urge you strongly enough to request that they assign someone to your daughter's case. I have a son with significant medical issues (including seizures) and the case manager has been a god-send to us! This person has been a tremendous resource person and advocate---getting things covered that aren't normally covered.
A few final thoughts---check with your school district and your department of public health to see if there are any additional resources in your community that you can take advantage of. Things like parent support groups, social workers, advocates, etc. It might be a long shot but if you don't ask you may miss out on some great resources.
Don't give up hope and don't let "the system" get you down.
Re: I need some serious opinions about my 5 yr. olds medication
Submitted by ekoorb on Mon, 2006-04-10 - 23:12
I am so sorry for the stress you are going through. Our family is very knew to epilepsy. Our daughter was diagnosed about a month and a half ago. We were forced into starting meds by a horrible doctor who frightened us into moving forward. We found a new doctor who actually hopes to be able to take her off the meds. However, one thing that sticks in my mind that I think he said was there is a danger in immediately stopping- increasing the possibility of seizures. Clearly I am not a doctor and have such limited info. on this subject but make sure if you decide to stop the meds that you find out if it is necessary to gradually take her off it.
I am sad for you that you feel you have run out of hope. I know we all hit these horrible points. When we first starting dealing with this, I felt like a zombie for a few weeks. I am sure you have an incredible beautiful child. If the doctors think there is some possibility with a new med, it sounds like it is worth trying and holding on to hope that it will work. None of us are superhuman and even as parents we are going to have our moments of hopelessness and sadness but if you keep trying and eventually find the correct meds, you will be able to get your feet back on the ground.
From your note, it sounds as if you started work today. I hope it went ok. Hopefully, your school can accomodate your needs and get an aid to work with your child in case she has a seizure at school. You obviously must go on living and supporting the family.
Dear PJ, I can sense all the
Submitted by rootbeergirl16 on Fri, 2006-04-07 - 11:18
Dear PJ, I can sense all the frustration you are going thru and I so wish I had a really good answere for you. I know that my daughters Nero told us that you have to slowly build the meds up in the body and I am just wondering if your doctor has givin time to do that being as your little angel is so newly Dx and the amount of different mes that have been tryed, I wonder if they have givin anything a fair chance to work. I would really hate to give you bad advice or wrong advice or to try to scare you in any way, But my daughters Nero told us that even if you can control things a little that was better then not at all because there is always a chance of a Sz being very hard to stop and that if that happens the choice would be to put the person in a drug induced coma and that can possibly cause some damage to the brain or if they quit breathing during a Sz that can cause damage also. Now that being said and the fact that I dont walk in your shoes I think as a parent you really have to go with your gut instinct and do what you think would be of the greatest benifit to your child. If you could take out the equation of everything else and think about what just your child (yes I know how hard that is to not figure in the job, money, meds not controling things ect) Perhaps you can find the answere. I think if it was me I would want to know that I did everything I could and tryed every avenue possible and not have the self doubt that I didnt try. What ever you decide to do I truly wish you all the best and hope that your precious little one can get some relief I know how had it is to keep fighting when things seem so hopeless but if there is one thing that is worth fighting for with every ounce of strength we have it is our childern. Always Pam