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But this time it's worse.

We are into year 7 with this. Our daughter is now in college (a good thing) but after some years of good control, she has fallen off the wagon. Several recent episodes. Falling behind in school. Angry and depressed. Driving license ancient history.

She is also far away. We probably should not have let her go so far (we are in LA and she is at Univ of Michigan). But she was well enough to go for it and we didn't want to hold her back. That was a miracle and do we hold her in a cacoon or let her go live a normal life. Now I regret it.

Now she is isolated. Won't talk to us really. Slipping further behind. We got her a new doc at the university who told her she had "intractable" epilepsy and that completely freaked her out. Got her a shrink to deal with the emotional stuff but she won't go.

Maybe it's good she was told her fate. Now she knows how serious it is. She always wants to ignore it all and just be normal. She drinks and smokes weed from time to time I think... Not good but it's what kids her age do and she just wants to be like the others but she is the only one that ends up splattered on the floor.

She is also now complaining about side effects. Can't think. Can't sleep. Has anger issues. Facial hair.

I don't know what to do any more. Doctors mean well but don't have a real path. She's on poly drug therapy and it doesn't work and she's all drugged up like a zombie. I wonder why we both with the drugs If they don't work. Daughter is frustrated and sad. My wife is a wreck. So distroyed. Thinks she is a failure as a mom. That God is punishing her. We can't agree on what to do. Like there is even an answer to that. I'm sooooo lost. I'm failing. I can't protect her. Can't clear a path for her. Can't find a doctor that will make this work better. Can't comfort her. Can't protect my wife. I'm at my wits end.

Sorry for the rant. No where to turn. I bet someone out there can at least relate. Someone, please give me the strength to go on.....

Philthedad

Comments

"intractable" epilepsy I

Submitted by just_joe on Mon, 2015-11-09 - 15:55

"intractable" epilepsy I still have seizures. The seizures today are focal seizures which can be like I ws daydreaming. The same seizures lasted 5-8 minutes and at times they would generalize (go into a convulsion). I am blessed to not have had a convulsive seizure since 1970. It took working with my neurologists and trying many different medications which helped control the seizures I have. Those seizures I had lasting minutes now last seconds. I could have one while talking to you and you would know nothing about it. Like I said CONTROL can have different meaning for people. FOr some control means no seizures what so ever and that does happen to many people. Another control is no seizures but still taking medications. My cousin is one that lands in that catagory. Then there are some like me and others that control means a seizure every 8-14 days that lasts a few seconds.I have know for years that I can be considered controlled. The options I have are limited to medications alone. So Doc and I have worked at getting the medications that can treat my seizures (several different types) with fewer side effects. It took asking questions at every visit. At times I made calls to doc and dosage adjustments were made. I had visits every 1-2 months when medications were changed. But with every visit I asked questions.Your daughter needs to make sure she takes her medications as directed. If it says 2 times a day then those times need to be 12 hours apart. That way the theraputic levels remain where they need to and the neurologist wants them. She does need to read about the triggers. One of the questions she needs to ask is what are some of the other triggers. One that isn't listed but I found out with me it is getting to hot to fast. I was being trained to be a roving chef and had a seizure after going 3 years without one. Yes control is there but it does take working with a good neurologist (specializing in epilepsy) and finding out if there are any other procedures that can help her.You have done what many parents won't do which is let her be like all ofhte kids. She is no different then any other kid. If you look at a corner and see the people waiting to cross the street you can't see the one that has epilepsy. Nor the one with a heart ailment or diabeties or any other ailment that is unseen. She needs to know that she can come to this site and use it. They have a 24/7 help line which she can call to get information or her friends can call to get answers to their questions . Free calls do help. She also has this forum and she has different places to post her questions. Yes she will get answers. She is not the only person that may and yes that is MAY have seizures. But it is up to her to determine how she will approach her issue. With some work she could end up like me where a seizure every 8-14 days lasting a few seconds will not keep her from much of anything. I have done many different things in my live. worked in th construction field. Food industry, insude sales, outside sales, telemarketing. co owner of a small business, ofice manager, warehouse manager customer service and handled executive appeals for AT&T. So if I can do any and all of those things she sure can do something. The way I got started was to tell myself I can do naything my brothers and friends can do. The only thing I haven't done legalle is drive. I know how and have in an emergancy. I hope this helps and she gets her seizures under control. Control is how one will look at it. Joe Just so you will know Doc nad I do know I will never be completely seizure free.

 "intractable" epilepsy I still have seizures. The seizures today are focal seizures which can be like I ws daydreaming. The same seizures lasted 5-8 minutes  and at times they would generalize (go into a convulsion). I am blessed to not have had a convulsive seizure since 1970. It took working with my neurologists and trying many different medications which helped control the seizures I have. Those seizures I had lasting minutes now last seconds. I could have one while talking to you and you would know nothing about it. Like I said CONTROL can have different meaning for people. FOr some control means no seizures what so ever and that does happen to many people. Another control is no seizures but still taking medications. My cousin is one that lands in that catagory. Then there are some like me and others that control means a seizure every 8-14 days that lasts a few seconds.I have know for years that I can be considered controlled. The options I have are limited to medications alone. So Doc and I have worked at getting the medications that can treat my seizures (several different types) with fewer side effects. It took asking questions at every visit. At times I made calls to doc and dosage adjustments were made. I had visits every 1-2 months when medications were changed. But with every visit I asked questions.Your daughter needs to make sure she takes her medications as directed. If it says 2 times a day then those times need to be 12 hours apart. That way the theraputic levels remain where they need to and the neurologist wants them. She does need to read about the triggers. One of the questions she needs to ask is what are some of the other triggers. One that isn't listed but I found out with me it is getting to hot to fast. I was being trained to be a roving chef and had a seizure after going 3 years without one. Yes control is there but it does take working with a good neurologist (specializing in epilepsy) and finding out if there are any other procedures that can help her.You have done what many parents won't do which is let her be like all ofhte kids. She is no different then any other kid. If you look at a corner and see the people waiting to cross the street you can't see the one that has epilepsy. Nor the one with a heart ailment or diabeties or any other ailment that is unseen. She needs to know that she can come to this site and use it. They have a 24/7 help line which she can call to get information or her friends can call to get answers to their questions . Free calls do help. She also has this forum and she has different places to post her questions. Yes she will get answers. She is not the only person that may and yes that is MAY have seizures. But it is up to her to determine how she will approach her issue. With some work she could end up like me where a seizure every 8-14 days lasting a few seconds will not keep her from much of anything. I have done many different things in my live. worked in th construction field. Food industry, insude sales, outside sales, telemarketing. co owner of a small business, ofice manager, warehouse manager customer service and handled executive appeals for AT&T. So if I can do any and all of those things she sure can do something. The way I got started was to tell myself I can do naything my brothers and friends can do. The only thing I haven't done legalle is drive. I know how and have in an emergancy. I hope this helps and she gets her seizures under control. Control is how one will look at it. Joe Just so you will know Doc nad I do know I will never be completely seizure free.

"intractable" epilepsy I still have seizures. The seizures today are focal seizures which can be like I ws daydreaming. The same seizures lasted 5-8 minutes and at times they would generalize (go into a convulsion). I am blessed to not have had a convulsive seizure since 1970. It took working with my neurologists and trying many different medications which helped control the seizures I have. Those seizures I had lasting minutes now last seconds. I could have one while talking to you and you would know nothing about it. Like I said CONTROL can have different meaning for people. FOr some control means no seizures what so ever and that does happen to many people. Another control is no seizures but still taking medications. My cousin is one that lands in that catagory. Then there are some like me and others that control means a seizure every 8-14 days that lasts a few seconds.I have know for years that I can be considered controlled. The options I have are limited to medications alone. So Doc and I have worked at getting the medications that can treat my seizures (several different types) with fewer side effects. It took asking questions at every visit. At times I made calls to doc and dosage adjustments were made. I had visits every 1-2 months when medications were changed. But with every visit I asked questions.Your daughter needs to make sure she takes her medications as directed. If it says 2 times a day then those times need to be 12 hours apart. That way the theraputic levels remain where they need to and the neurologist wants them. She does need to read about the triggers. One of the questions she needs to ask is what are some of the other triggers. One that isn't listed but I found out with me it is getting to hot to fast. I was being trained to be a roving chef and had a seizure after going 3 years without one. Yes control is there but it does take working with a good neurologist (specializing in epilepsy) and finding out if there are any other procedures that can help her.You have done what many parents won't do which is let her be like all ofhte kids. She is no different then any other kid. If you look at a corner and see the people waiting to cross the street you can't see the one that has epilepsy. Nor the one with a heart ailment or diabeties or any other ailment that is unseen. She needs to know that she can come to this site and use it. They have a 24/7 help line which she can call to get information or her friends can call to get answers to their questions . Free calls do help. She also has this forum and she has different places to post her questions. Yes she will get answers. She is not the only person that may and yes that is MAY have seizures. But it is up to her to determine how she will approach her issue. With some work she could end up like me where a seizure every 8-14 days lasting a few seconds will not keep her from much of anything. I have done many different things in my live. worked in th construction field. Food industry, insude sales, outside sales, telemarketing. co owner of a small business, ofice manager, warehouse manager customer service and handled executive appeals for AT&T. So if I can do any and all of those things she sure can do something. The way I got started was to tell myself I can do naything my brothers and friends can do. The only thing I haven't done legalle is drive. I know how and have in an emergancy. I hope this helps and she gets her seizures under control. Control is how one will look at it. Joe Just so you will know Doc nad I do know I will never be completely seizure free.

You are going thru what my

Submitted by just_joe on Wed, 2015-11-11 - 12:05

You are going thru what my parents did. However back then there were no computers or forums like this. It took me some time and my parents timme to just treat me as my siblings were treated.Everybody has a problem of some kind. People wearing glasses, people in wheel chairs or wearing hearing aids. They are accepted more because their issue is seen.Epilepsy is unseen except for the time in the seizure.Your daughter is no different then anybody else.My parents wouldn't let me play on the football team. That didn't mean I couldn't be on the team. I ws the freshman manager. All the teams that year were to come in last in the district. well we fooled everybody. Once the season was over I checked in the equipment and went in and handed in the clipboard. I said good by to the coaches and when leaving they told me the JV team needed a manager. So I moved to that team for another week. I did the same thing and when turning in the clipboard I started leaving and the coaches told me they had already talked with Mom and that I would be a Varsity manager starting the next day. So I was teh only freshman to get a varsity letter when being a freshman. She can be a part of the teans without playing in many areas. Soccor does have a person that takes care of the balls and carries the tape and towels so look at it from a different angle Joe