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Help!!! My son has just been diagnosed!
Thu, 07/05/2007 - 21:29Topic: Parents & Caregivers
My son had febrile seizures as a baby, is now 16, and has begun to have seizures again. He is now undergoing tests, and is taking Keppra, 500mg, twice a day. The neurologist claims that a lack of sleep is one of the triggers, and he won't increase the medication yet, even though my son has had a seizure while on the Keppra.
I am a single mother, and I must work. My son has had three seizures this summer, and two of them have resulted in head injuries.
My question is, what am I supposed to do? We can't sit here and watch him 24 hours a day. All three times he was at home, and we were here.
I am living in fear, especially since this could happen on the street. I can't sleep at night, because one of the seizures happened in his room at 2 AM in the morning. He doesn't listen to my daughter and I. He stays up late. I would have felt much better if the doctor would have increased the medication.
If anyone with more experience could give me some relief from this anxiety, I would really appreciate it. Thanks
Comments
Re: Re: Re: Help!!! My son has just been diagnosed!
Submitted by ssuuzzyy on Fri, 2007-07-27 - 11:29
Mom of 18 yr old boy diagnosed with JME in Nov 2005.
Hang in there -- I understand your feelings. It is difficult but it is best if you can let your son live life as "normal" as possible for a boy his age. The first six months are the toughest. He knows we are over protective also and mostly tries to laugh about it. We have asked our son to keep us posted as to where he is/what he is doing (and, of course, like most kids his age he "forgets" to call us). His friends are aware of his situation and know what to do. He has been responsible about taking his meds. He will be leaving for college in a month, about 1.5 hours away, which is scary but necessary for him. I don't know what type of epilepsy your son has but perhaps consult a different neurologist to review the medication issue. Good luck.
Re: Re: Help!!! My son has just been diagnosed!
Submitted by Daronides on Fri, 2007-08-24 - 14:54
I really appreciate your comment. My daughter is only 7 and I do the same with the other mothers. I bought her a ID bracelet to wear, I jump at every sound, I dont want her to run, I still sleep with her and lay my hand over her just so I can see if she's okay. I dont want her to do anything dangerous and most of all I dont want her to leave my sight! I worry every second of the day. I work nights so I'm home during the day if anything happens at school and my husband works day so he's home at night. Just to make sure someone is always with her. The weird thing is, she's on depakote and she hasnt had 1 seizure while on it. The last time was 2 yrs ago when they weaned her off and it only took 3 days without meds to seize again. We put her back on depakote again. So I know now that she can be seizure free for a while, live happy, and do what other children do. Thank you so much.
Re: Re: Help!!! My son has just been diagnosed!
Submitted by nickaroo242 on Wed, 2007-07-18 - 19:27
Thanks so much..... Being a parent is tough. I tend to be over protective even before the seizures started.I my doing my very best to be caring but also give him space.My own mother said i am to over protective,that hit me hard because i always thought she was to over protectve of me.I never say never to him because with research and new meds.things can change in a heartbeat,I hope for all the people in the world dealing with this that someday they find a pill to help everyone become seizure free 100% of the time.keep moving on and reaching all your goals!!!