reluctance to put 13 year old daughter on seizure medication!

Suzy - posted on 01/16/2011 ( 15 moms have responded )

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Hi, I'm new to this site and I'm just wondering if I can get any feedback from mums who have or haven't put their kids on medication to control their seizures. My daughter started having complex partial seizures at age 11, usually at night and about 4 to 6 times a year. When she started her periods they became regular and happened every 28 days, about 5 days after she finished her period. In fact so regular I could predict a seizure down to the day!
I read on the internet that progesterone had been known to control some hormonal caused seizures so put her on the progesterone only pill. Amazingly, her seizures stopped for 6 months. However, in the last 2 weeks she has had 2 quite bad seizures. I am so perplexed as to why the progesterone seemed to work and now she's having the seizures again.
Now I find myself in the dreaded position of considering carbamazapine for her. The thought of her being on medication, especially seizure medication, scares the hell out of me. I'm scared that once she's on meds, that'll be it for her life, scared of bad side effects, scared of her not taking it properly (being a teenager) and going into status epileptus.... Her seizures lately seem to be triggered by late nights and as a teenager she resents me making her go to bed early and not go to friends cos i'm petrified of her having a seizure. All she wants is to be a normal teenager but she is not keen on meds as well! Any advice? Has anyone had success with meds and the eventual weaning off the meds and their child grow out of seizures. I hope someone out there can help!

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My daughter has the same type of seizures as yours. Everyones case is different but I think moms of young children dont understand the problem with giving teenagers seizure drugs. My daughter is sixteen and she had started have seizures at 18 mths until age 11. She began her period then and her seizures stopped. At age 15 she began having seizures again but not often. We have tried three drugs over the past six mths and they cause teen girls to have suicidal thoughts. We have her on nothing right now but seritonin and birth control to take her period away for now. She has stopped having all seizures with this treatment and is finally back to herself again. I do home school to keep a good eye on her. She also has tourettes and panic attacks from years of having seizures and the heavy medications they put her on. At one point in her childhood they thought she had asbergers because the meds for seizures took away her personallity. Please just research all drugs they suggest and speak with your neuro about taking her cycle away for a while. God Bless you and your daughter through this difficult time and I wish you both the best outcome.

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KELLIKAYZ - posted on 02/02/2011

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I am an rn and i have not placed my 14 year old son on the prescribed keppra as of yet. My son had his first sz last feb. and then a second on dec.15. Both were in the morning and all of his tests came back normal so I did some digging and personally felt like his blood sugar was low which triggered his sz activity. He is 6'3 and 160 pounds, plays all sports and one thing I agree with the doctor is that he has to live his life as normal as possible and not try to keep him in a bubble. I have discussed with my son and his father the importance of him eating a good breakfast and getting plenty of rest. I pray he won't have anymore and I pray this helps you in some way. Sz are definitely scary.

Elaine - posted on 01/31/2011

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My son started last august at 16. Just like your daughter at puberty he began having partial complex seizures and now he has tonic clonic seizure proceeded by partial complex seizures when he is sleep deprived or does other teen activities that stress his too much. He is taking Keppra and is still trying to get an appointment with a neurologist, appointments are hard to get were we live. The keppra helps but he will have a seizure in the morning if he doesn't take care of himself. His friends know what is happening to him and his real friends are standing with him to help, he understands and though he wants it to end we find honesty works best to help him handle what he is going through. Each case is individual but you must know that it is always possible that they will only be a temporary series of events that that can end.

Michelle - posted on 01/26/2011

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Well, I can say, my daughter started having seizures out of no where at 9 or 10. More or less, they never really go it catagorized as a specific type of seizures. She had them for 2 yrs. and they were going to put her on meds but we decided to wait because they are a life long drug. The doctor advised me she would have to be on seizure meds the rest of her life. Luckily for me, she out grew them just before she got her period. It very well could be effects of horomes changing. Our horomes are not the same levels all through pre-teen and adulthood. I would maybe see what else her doctor could do..up the dose of progesterone or maybe a different combo. I would sit her down and explain to her that it is very important if she wants to have a more "normal" teenage life, then she needs to prove that she can follow the rules, like going to bed at a decent hour. All of those rules are what will HELP her to have a more "normal" life. I know for my daughter, they can't guarentee me she will never have another one. Her seizures were unique, she wouldget them at all different hours of the night and the first one was brought on by a high fever. She has had two EEG's and a MRI and none of those showed anything abnormal. She would get them in sets of two and they would progress to affect more body parts. The last one, she was crying out that she could'nt breath and her heart was racing. I thought she was having a panic attack on top of the seizure but her Nuerologist said that the seizure was making her heart race which was making it harder for her to breath. I had my youngest daughter sitting on the side of us with 911 dialed in so all she had to do was push the button to send the call as I kept my other daughter talking. I figured if she could talk, then she could still breath. It passed thankfully, that was the second one and just as they appeared out of no where, they stopped out of no where. There still is no rhyme or reason as to why she was getting them. I can say however, I am glad they did. I made sure all of her teachers, the school nurse, her before/after/summer care knew and exactly how they went so everyone knew what to do, when to call 911 and how to handle her as she could hear every word you spoke. I know how scary they can be. I always just talked her through them and massaged her foot..seemed to help relax her a small bit. If your child will be sleeping over at a friends house, I always made sure the parents knew and how I handle it and my cell phone which I still never turn off.

Leslie Taylor - posted on 01/22/2011

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I will tell you that you definately have soemthing when it comes to changing sleep patterns. It really affects some people. We have been on that medicine but honestly you can't take anyone elses experience because your child is totally different. I think you are right to be cautious. I know from experience that you have to really watch and look for anything that doesn't seem right. Also not letting a doctor start or change doses of one or more medications at a time. I empathize with you on all the changes with a teen. Hang in there and keep talking it does help.

Sandy - posted on 01/22/2011

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First of all ... every seizure is doing damage to her brain!! Don't worry about her being on medicine for the rest of her life. If she doesn't get the seizures under control .... she may not be alive as adult. Sorry to be blunt but it's the God's honest truth!! Hormones to make a difference. My son went through puberty 2 years ago at 10 years old and this past aug. 31, 2010, his seizure just stopped. No explanation. One thing I recommend highly is to give her 3mg. of Melatonin an hour before bedtime. This helps the brain slow down and I swear by it. My son now sleeps through the night without having any seizures or sleepless nights. I also give him Lechithin 4 nights a week. It's a vitamin/mineral and it's for brain function. I personally believe that the Lechithin may have been what stopped the seizures. It was the last thing I had changed.

Joey has been on Trileptal since he was 18 months old and it has been a good drug. It's an oxcarbazapine. Stay away from Keppra, Zonagran, they bring violence and Abilify made my sons seizures horrific!! You have to be very careful with how you put her on and off meds. Best of luck. Sandy

Kayla - posted on 01/21/2011

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my son is 17 months old and his nurologist put him on Keppra. It has very low side effects and so far he has done very good on it.

Tiffany - posted on 01/21/2011

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Hello. My son had a fall and that is what caused him to have seizures. At first I didn't want to put him on any meds and I say that we had to because he couldn't even sit up! He was having so many petits that it was scary. He had all the seizures and that was even more scary. We went thru hades just to get him on the right meds and carbamazapin was one of them. It is one that is addictive! I can say this, I weaned him off all of his meds and it took a long time! He hasn't had any seizures for 2 1/2 years. There are side effects from being on the meds for so long. Right now we are going thru intestinal issues. Just be careful and read up on the meds before u consider any of them. My sister is on Tegretal and it worked wonders for her. She didn't have a lot of seizures and hers was caused by a fall too. I will pray for you 2.

Linda - posted on 01/20/2011

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Hi Suzy, My son has been on medications for a while now - he started off with just keppra ... then the keppra stopped working and depakain was added. He then had behavior issues and was weened off keppra and tried on adderal - he started having seizures again was taken off that and was only taking depakain again.. then he was tried on resperidol and same thing he was taken back off it after one dose. He has not had any seizures now with the depakain by itself for a couple of years now. Medication is not as bad as you think it is... I didn't want to put my son on any either at first until I seen how it helped him. You just have to read up on the meds they give her and see the side effects and stuff so you know what to look for - most time the pharmacy will supply that for you or you can always look it up online. Most important thing is to watch for side effects - know what they are and be aware that sometimes medications wear off and might have to add something else with it or take something else away. Eventually tho - things usually or as they have with me - have worked out. Good luck! Keep me updated!

Natalie - posted on 01/20/2011

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Your description of your daughter sounds like me when I was her age. Its me who has the Epilepsy not my children. I used to take carbamazapine and when I was her age I was in denial and my mom never really spoke to me about it. I never took my meds regulary and my Epilepsy was terrible. It took me many years to realise the dis-service I was doing to myself by not taking my meds and having repeated seizures.I even lost friends as I was having regular seizures. I know the thought of meds for life isnt a pleasent 1 but the most important thing is keeping her seizure free. If she is seizure free on meds then she can be a normal teenager and no-one need know she takes them. If she keeps having seizures then theres a lot worse things that can happen to her. My many seizures resulted in accidents such as falling down stairs some accidents a lot worse than that all because I wouldnt take meds. I have now come to terms with my Epilepsy and its just a part of me so I have to take meds for the rest of my life Im still the same person and Im at least having a life which without the medication I know I couldnt have as I would be restricted. I hope this helps a little like I say it took me years to come to terms with the whole Epilepsy tag but I really do wish it hadnt taken me so long to realise that having Epilepsy isnt so bad and that it is managable with the right treatment. x

Christina - posted on 01/19/2011

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I also recommend Cranial Sacral therapy, just type it in the internet and you'll find someone that can do this for her.

Christina - posted on 01/19/2011

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Go and see a certified Natural Path doctor mine gave me Epsi and Para these are natural meds that can help to stop the seizures all together and wont harm her body at all. this comes from Germany. And is well recognized in the European countries. Best of all it works. I also have complex partial seizures since infancy and has enabled me todecrease the use of pharmaceutical meds by 75%, Good Luck: )

Kelly - posted on 01/19/2011

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Seizures themselves can be very dangerous or worse....Your daughter seems to have a history of seizures which means she has epilepsy. Medication may very well help her to achieve seizure control. Seizure control is ideally want you want for her safety.And your peace of mind. This med you have mentioned has a long standing track record. Do not fear what may help. There are many more worse things than taking medication for a medical condition. If your daughter remains seizure free for a period of time 1 to 2 years she may not need medication any longer...or she may. Cross that bridge when you come to it. For now try whatever you need to to control the seizures.

Kerry - posted on 01/19/2011

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I cannot compare exact scenarios but my daughter still has daily seizures even on 3 seizure meds, a vaguest nerve stimulator and ketogenic diet. BUT over the last 5 years we have been on these and when they didn't help within a few months, we changed. Side effects...change. It can be a frustrating process but it is worth not having them or as many. Good luck with the challenges ahead!

Michelle - posted on 01/19/2011

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My daughter is only 6 but there was no question she needed medication. I am actually a natural living kind of girl. We don't medicate for things and if we do its usually naturally. But my daughter was having a seizure a week. It was effecting her at school and home. It was hard to watch her go through it so often. She needed the medication.

Once she goes 2 years with out a seizure we are going to test her to see if she has out grown them. Which is always a possibility. But I need to know that she isn't going to seize when in gym class or if shes not with me. Even though she still can while on meds... its less of a chance.

BTW my daughter was on Keppra for a year and we didn't see ONE seizure. Then almost to the day she started having them she started having more and more. She is now on Keppra and Lamictol. I don't know why the keppra seems to be less effective.

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