A place where parents can post information about their beautiful children who have Epilepsy.
Latest Activity: 10 hours ago
Started by Teresa Labovich 10 hours ago.
Started by Anne. Last reply by Angie Sussdorff 22 hours ago.
Started by marcia mendez. Last reply by Angie Sussdorff 22 hours ago.
I'm a parent of a now adult (20yo) son with epilepsy who wasn't diagnosed until he was 16 year old after he had his first grand mal seizure. Are there any other parents of children who developed epilepsy later in their teen years whose now adult children don't seem to be very good about taking care of themselves, i.e. good/consistent sleeping and eating habits?
Good morning, Juli, Here is my 2 cents - I can very well understand your concern regarding your son's lack of responsibility/accountability in this area of his life. I would feel the same if I were in your shoes. You were responsible for his welfare and able to regulate his life/actions for so long but now he is an adult and responsible for his own life/actions. It's hard to let go and I would struggle with it also. My son will never be able to do as your son. He is cognitively affected by epilepsy/meds. In this I envy you...
I would have closure with an uninterrupted 10 minutes where I expressed my concerns and fears and end it with 'I love you more than life'. That is easier said than done and every time you begin to worry remind yourself you have done all you can and, really, are no longer responsible for his actions.
Dose he have seizures when he doesn't take his meds? If he hasn't had a seizure in years, than I can understand his apathy towards his meds and maybe it is time to look at some alternatives? If he does have seizures when he stops his meds, maybe some action needs to be taken to make sure that he stays safe (such as having his licence revoked). Either way, it is a tough decision. I can understand him not wanting to take his meds if he feels fine and does not have any seizures without them. And I can understand your hesitance to change what has been working thus far. If does have seizures, than he needs to be the one who decides what the lesser of the two evils are. Taking meds and being able to continue to drive and live his life as he has been, or not taking meds, having seizures, not being able to drive and possibly having to change other aspects of his life, but maybe figuring out who he is when he is not on them. I do not have a young adult yet, but I do know that this is something that my child is going to possibly have to live with for the rest of her life even long after I am gone. And the choices of treatment (or lack thereof) need to be hers. All you can do is to make sure that they realize all of the options and all of the possible consequences and help them to make the decision that feels best to them and realize that may keep changing until they figure out what that best for them is. You can do your best to try to keep them safe in the meantime, but all you can do is hope that the consequences of their choices are big enough to help them make their decisions, but small enough not to have long term effects. It's really the same with anything in their lives, drinking, drugs, partying, cliff diving... Just keep the lines of communication open without making them defensive and having them shut you out. You have done your job now and you have to hope that they will make the right decisions. Maybe working together to figure out why he isn't taking them as he should be and figuring out what options he has going forward and what the pros and cons of each option are would help him to make the best decision. Good luck to both of you in finding something that works.
Terrance, I understand that concept but realize that when he doesn't take his medication he puts more than just himself at risk. There is the fact that he drives - what if he quits taking his medication and has an accident where either himself or someone else is injured - and I knew that he wasn't taking his medication. I guess I'm looking to see if there are other parents with children that are young adults - do they also struggle with this point of pain, has anyone gotten through to the young adults, what has worked for them, I think as a parent, I just can't sit back and say - oh well it's his life - I need to protect not only himself but others. What do others think?
You did your part in raising your son showing and teaching him right from wrong, But if your son don't want to take his med that's his choice even though he should but if he has a sz that's his fault not yours. Parents can only do so much and you did your part & now its his life and choice. Its not worth getting up son on your son you are just making it harder and more stress for you so I would leave him alone on that cause it his problem his life and he will learn, good luck
I'm a single mother who has been dealing with a child with absence seizures - diagnosed when he was in the 2nd grade. He is now 21. We struggle with him taking his medication. He is an adult and I'm not sure how to trust that he's taking his medication or get through to him how important it is. Has anyone ever had these struggles, what have you done?
Hey, there! My daughter, age 17, was diagnosed with JME at 14. I'm just struggling right now as she's a senior in high school and she had another grand mal last week, which always sets her back emotionally and physically. I really don't know how to deal anymore. Any help, insight would be appreciated! Also, I'd like to hear of some drug combinations that got other kids with JME under control. We are going to see another neurologist next month because I feel maybe there is something out there we are not pursuing. She is on 1750 keppra 2xday and 300 lamictal 2xday along with Zoloft for depression.
It's been awhile since I've posted but I need some help. Jacob's seizures either keep changing or adding new seizures to the old ones. He started with tonic clonic around the age of 4 along with drop attack seizures. Both scary and life altering. Then came the absence seizures. The doctors believe in addition to the others and his medication, lamictol, is controlling the others. So they have gradually increased his dose. Now Jacob is 6. His absence seizures may be complex partial seizures instead of absence or he is having those in addition to all the others. So, another increase. He is up to 100mgs in the am and 75 in the pm. The doctor says we can go up to 125 mgs twice daily if need be. Here is my concern. Can a 25 mg increase in lamictol cause a complete behavior change. Up until this added amount we had no side effects from this med. However over the last few weeks his silliness, lack of concentration and lack of impulse control have gotten worse. Jacob actually was pulled out of a group lesson to work one on one with his teacher yesterday because he was too distracting for the other kids. One on one proved to not be the right answer so he and the classroom aid went into the hall to take a break. He cried so loud that the principle came down and had him go to the nurses office for some quiet time to calm down. Eventually he was able to calm down and return to class. They then had a fire drill and he got up and started running around the classroom mimicking the fire alarm. Which he knows is both not safe and not what you are suppose to do when that happens. He teacher called me very concerned with his behavior. When I talked to Jacob he said that he didn't understand the work and that his teacher wouldn't help him. I know this is not true. She is an amazing teacher and goes out of her way when needed. So could he be having partial seizures and not know what is going on? Could the slight med increase be interfering with his impulse control? It's all so frustrating! I have called his neurologist twice now and have yet to receive a call back. Today we are going to see his pediatrician and have her help us figure this out with the nuero, she's another awesome resource in his life.
Rosemarie- Check your inbox on your epilepsy ecommunities page, I sent you a friend request along with a note which has my direct email address, so that you can contact me directly if you have any questions or need guidance in the process. My opinion, dealing with all the meds, insurance, daily battles of epilepsy we need more people to reach out and help each other! Best, Ann
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