hello. i am a mother of a jme daughter , 17 and came here today to hopefully get a little support from yall when i have days like today. we are almost one year into our epilepsy journey and the road has been seriously bumpy. having a teen with this disorder is the worst. what a time for an irresponsible developing human to deal with the reality of her disorder. we began with topomax. gradually increasing the dose and gradually distroying our happy, quiet home. well that was a real nightmare.....she dropped 30 lbs in the first four months and raged daily. after sleeping with my door locked for a few nights i decided the topomax had to go. now, lamictal, the polar opposite of topomax (lol) is working out great emotionally, but after 11 months of no seizures she had another one on july 3rd. she is also jerking almost daily. drs say to increase dose but she has her mind set on going back on topomax and today the tell her they wont put her back on it. soooo, needless to say she is fit to be tied. just came in here to hear from anyone who can relate. sometimes i feel like noone can, at least no one around here! anyway....enough of the serious stuff. i am looking forward to exploring this site and hope to meet some friends along the way:rock:
new here and frustrated
- Thread starter jazmom123
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Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
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Welcome jazmom!
I think everyone on this site can relate to frustrations with medications. (Don't get me started!). It always seems to be an uneasy balance between the seizure control and the side effects. And a number of folks on this site have teenagers they are caring for, so you have plenty of company in that arena!
A few questions -- why does your daughter want to go back on Topomax? Is it because the control was better, or is it because she doesn't like the side effects of Lamictal? Is there any particular trigger you can identify for the July 3rd seizure? If you can figure out the stressors to avoid, it can potentially help with minimizing seizures, and avoiding higher doses of the AEDs.
If possible, it would be great for your and/or your daughter to keep a journal of things like diet, sleep, activities, moods, hormones -- sometimes one or more of those can act as seizure triggers. It's not always easy, but a number of folks on this site have found that it's definitely worthwhile.
There are lot of great things on this site -- information about helpful alternative approaches, places to vent and chat ask questions...
Best,
Nakamova
I think everyone on this site can relate to frustrations with medications. (Don't get me started!). It always seems to be an uneasy balance between the seizure control and the side effects. And a number of folks on this site have teenagers they are caring for, so you have plenty of company in that arena!
A few questions -- why does your daughter want to go back on Topomax? Is it because the control was better, or is it because she doesn't like the side effects of Lamictal? Is there any particular trigger you can identify for the July 3rd seizure? If you can figure out the stressors to avoid, it can potentially help with minimizing seizures, and avoiding higher doses of the AEDs.
If possible, it would be great for your and/or your daughter to keep a journal of things like diet, sleep, activities, moods, hormones -- sometimes one or more of those can act as seizure triggers. It's not always easy, but a number of folks on this site have found that it's definitely worthwhile.
There are lot of great things on this site -- information about helpful alternative approaches, places to vent and chat ask questions...
Best,
Nakamova
Hi there, hello
and how do you do! It's very nice to meet you, Jazmom! Welcome to CWE! Mr B, our host, has built us an AWESOME home here!
I, too, know the trials and tribulations of many different medications.......OY. At least 14 different names come tripping off my tongue, and I know there's at least 5 more. Sorry, the memory's not all it used to be.
Sorry to hear about all the grief that your teenager is giving you...I'm sure it's not fun. I didn't have the experience of having a teenager with E, I'm an E patient myself. There are quite a number of parents here in the forum though--and one that I can think of right off the bat that has kids that are about your daughter's age with JME is Joan. You might want to PM her, just to chat, or whatever.
Nakamova's right about the journal. There are quite a few things that should go into it. I've posted quite a list on several other welcome posts--or if you'd like, I'll post it here for you, too.
Anyway, welcome to CWE, check out the different nooks and crannies like the Library and Kitchen, they're full of information and the Padded Room is great for venting when you absolutely need to, and trust me we've all been there.
So feel free to kick back, and enjoy yourself. Hopefully somebody will be around with some decent drinks. I keep falling asleep and screwing mine up.
Take care, and good luck!
Meetz
:rock:
and how do you do! It's very nice to meet you, Jazmom! Welcome to CWE! Mr B, our host, has built us an AWESOME home here!
I, too, know the trials and tribulations of many different medications.......OY. At least 14 different names come tripping off my tongue, and I know there's at least 5 more. Sorry, the memory's not all it used to be.
Sorry to hear about all the grief that your teenager is giving you...I'm sure it's not fun. I didn't have the experience of having a teenager with E, I'm an E patient myself. There are quite a number of parents here in the forum though--and one that I can think of right off the bat that has kids that are about your daughter's age with JME is Joan. You might want to PM her, just to chat, or whatever.
Nakamova's right about the journal. There are quite a few things that should go into it. I've posted quite a list on several other welcome posts--or if you'd like, I'll post it here for you, too.
Anyway, welcome to CWE, check out the different nooks and crannies like the Library and Kitchen, they're full of information and the Padded Room is great for venting when you absolutely need to, and trust me we've all been there.
So feel free to kick back, and enjoy yourself. Hopefully somebody will be around with some decent drinks. I keep falling asleep and screwing mine up.
Take care, and good luck!
Meetz
:rock:
Blondie47
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Hello jazmom123
I have a 13 year old who has been diagnosed and on aed's for 9 months now.
I can relate to your frustrations- we went 5 months with one neuro with little control and tons of side effects. Epilepsy was taking everything away from our DD and our family too. At that time I made an appointment at a level four epi center. It made all the difference for our DD - new aed controled well for 8 weeks, until recently, so back on the rollercoaster for now. I am waiting to speak to the np about our recent seizure. It is tough- but I feel that my DD is getting excellent care & support from our epi.
Keep in touch with your doctor and tell them about your daughter's concerns.
They will give you the right words to say to her, or maybe they can talk with her!
I have a 13 year old who has been diagnosed and on aed's for 9 months now.
I can relate to your frustrations- we went 5 months with one neuro with little control and tons of side effects. Epilepsy was taking everything away from our DD and our family too. At that time I made an appointment at a level four epi center. It made all the difference for our DD - new aed controled well for 8 weeks, until recently, so back on the rollercoaster for now. I am waiting to speak to the np about our recent seizure. It is tough- but I feel that my DD is getting excellent care & support from our epi.
Keep in touch with your doctor and tell them about your daughter's concerns.
They will give you the right words to say to her, or maybe they can talk with her!
RobinN
Super Mom
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Hi jazmom - Welcome to CWE
I can relate. Three years ago my life was where yours is now. Though my daughter has had tonic clonic seizures. Only on meds did she have odd and totally different types of seizures and side effects. Loss of sight, complete muscle pain, suicidal tendancies, sore throut, etc.
I bucked the system and took her off. Put her on 1000 mg of magnesium, did neurofeedback, and started making nutritional changes....serious ones. She has now been seizure free for 3 months. It has made all the difference in the world. She too, was awful to live with, and life for her was deteriorating around her. My 14 yr old at the time, was a mess. I can say for certain it was the meds, and not the disorder. The best thing for us has been weekly therapy. Her doctor has supported me/us in all the alternatives that I have wanted to try. We discuss the pros and cons. She is also aware that I am doing ALL that I can for my daughter and that conventional medicine failed us terribly.
I suggest that you do private message Joan. Her daughter has been having great results on teh Modified Atkins Diet.
HTH
*BTW my daughter is now 17
I can relate. Three years ago my life was where yours is now. Though my daughter has had tonic clonic seizures. Only on meds did she have odd and totally different types of seizures and side effects. Loss of sight, complete muscle pain, suicidal tendancies, sore throut, etc.
I bucked the system and took her off. Put her on 1000 mg of magnesium, did neurofeedback, and started making nutritional changes....serious ones. She has now been seizure free for 3 months. It has made all the difference in the world. She too, was awful to live with, and life for her was deteriorating around her. My 14 yr old at the time, was a mess. I can say for certain it was the meds, and not the disorder. The best thing for us has been weekly therapy. Her doctor has supported me/us in all the alternatives that I have wanted to try. We discuss the pros and cons. She is also aware that I am doing ALL that I can for my daughter and that conventional medicine failed us terribly.
I suggest that you do private message Joan. Her daughter has been having great results on teh Modified Atkins Diet.
HTH
*BTW my daughter is now 17
Hi! Jazmom!
I have had E. for 35yrs. now and my parent's and family have always been there for me. I can relate to how your daughter is being stubborn about wanting to take topamax I have been down that road before. First I want you to know that I use to take topamax too. The one side effects of her having about rage because I use to have those side effects with that med too. My mom had to pull me off of that med I was angry about that but she stuck it through and was determind to pull me off as well. Well eventually she won the fight. The way she did it was pulling me off of them slowly I was taking some meds. that were causing me to go crazy I was going out of my mind where I was trying to not only hurt myself but my family as well. My sister had to come down from where she's living now and stay with us to help my parents out. I think God for giving them to me each day because if not for the help of my sister brother-in-law, and neices there's no telling who I would have hurt. I didn't even know what I was doing it was like I was in a fog like state. My family said I wanted to take the meds that were actually causing me to have these side effects. It was my pharmasist that caught what the meds were doing to me so he helped my mom slowly get me off them. I don't know if you have anyone in your family that I am fortunate to have so that you can get help there. All I can say is when your daughter gets stubborn about wanting to take meds that you feel is hurting her more than they're helping her. You need to be more stubborn then her I know it's going to be hard. But you have to stay strong and stick to your guns for your daughters sake. I hope you can get something out of this that will be able to help you. After all coming from someone that actually went through this and know what she's feeling she will thank you in the end. Like I said I think God for the family he gave me to put of with me and help me through what I was going through. Especially the parent's he gave me. Most of all I thank God because he's the one that gave them the strength they needed, and he never once left our side. God! Bless you!
I have had E. for 35yrs. now and my parent's and family have always been there for me. I can relate to how your daughter is being stubborn about wanting to take topamax I have been down that road before. First I want you to know that I use to take topamax too. The one side effects of her having about rage because I use to have those side effects with that med too. My mom had to pull me off of that med I was angry about that but she stuck it through and was determind to pull me off as well. Well eventually she won the fight. The way she did it was pulling me off of them slowly I was taking some meds. that were causing me to go crazy I was going out of my mind where I was trying to not only hurt myself but my family as well. My sister had to come down from where she's living now and stay with us to help my parents out. I think God for giving them to me each day because if not for the help of my sister brother-in-law, and neices there's no telling who I would have hurt. I didn't even know what I was doing it was like I was in a fog like state. My family said I wanted to take the meds that were actually causing me to have these side effects. It was my pharmasist that caught what the meds were doing to me so he helped my mom slowly get me off them. I don't know if you have anyone in your family that I am fortunate to have so that you can get help there. All I can say is when your daughter gets stubborn about wanting to take meds that you feel is hurting her more than they're helping her. You need to be more stubborn then her I know it's going to be hard. But you have to stay strong and stick to your guns for your daughters sake. I hope you can get something out of this that will be able to help you. After all coming from someone that actually went through this and know what she's feeling she will thank you in the end. Like I said I think God for the family he gave me to put of with me and help me through what I was going through. Especially the parent's he gave me. Most of all I thank God because he's the one that gave them the strength they needed, and he never once left our side. God! Bless you!