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New Here, Worried/Concerned...Please Help : (
Fri, 01/06/2006 - 09:53Topic: Parents & Caregivers
Hello all, I'm hoping someone can help me sort out my confusion and worries. My name is Anne, and my sweet, bright, handsome son (about to turn 9 this month) has had quite a strange year (in 2005).
He had 3 seizures in about 28 hours back on December 1st and 2nd. Two "focal", and one "tonic clonic" (the whole body one).
These took us by complete surprise - there is no history of epilepsy or seizures in our family.
He had no fever, nothing had changed in his life that we are aware of.
Okay, the reason I am concerned, is that I feel his health is declining, and I feel powerless, helpless, and totally confused.
History:
*Perfect health til 2005 -- rarely sick, ate really well, etc.
*Summer 2005 -- he developed hypertension, resolved after 3 months, we still don't know why (he is not even remotely overweight, very healthy eater).
*Fall 2005 -- he became frequently fatigued, irritable, tired all the time. Started looking paler than usual.
*December 1st and 2nd -- the seizures.
*EEG abnormal -- sharp wave pattern in temporal lobe region.
*CT scan -- clear
*MRI -- "normal", incidental finding of cyst on/in pineal gland
*Official Diagnosis = "Focal Seizures"
*Very, very thorough bloodwork reveals everything to be totally normal -- he did test positive for Mono -- not acute, so maybe that explains his fatigue???? But doctor said most people do test positive for Mono, so this is not entirely helpful.
Sleeping and eating haven't changed much, yet he is soooo tired all the time.
Could he be having seizures at night we are unaware of?
Would an overnight EEG be helpful?
I am sorry this is so long, I hope someone here can help me or give me some insight or guidance. I feel like my son's health is deteriorating and NO ONE has ANY anwers! : (
Thank you so much to anyone who can offer any advice...
Warm Regards,
Anne
Comments
Re: Re: New Here, Worried/Concerned...Please Help : (
Submitted by annemom on Sat, 2006-01-07 - 11:35
Thank you, Barbie! I had never even heard of an epileptologist -- thanks for the tip. I am learning something new every day!
The running theme most relevant to me in all of this helpful advice is that I must be my son's biggest advocate. I have lots of practice with this as I navigate the school system with my middle son who has autism, so hopefully it will come naturally to me now with this new challenge.
Thank you again for the support!!
Best,
Anne
Re: New Here, Worried/Concerned...Please Help : (
Submitted by KelleyV on Sun, 2006-01-22 - 21:06
Hello Anne!
I am new here too! My son was diagnosed about 2 weeks ago. His first seizure was mid- December (grand mal). I had no idea what I was looking at. He was alone in his room, watching TV, and I heard what sounded like someone gagging. I went to the room and thought he was choking..to the point where I thought there was no saving him. I called 911 and the paramedics came within a minute. They explained to me he was having a seizure, which was ending when they came.
Our pediatrician said millions of people have 1 seizure and never have them again. He wasnt really concerned as my son just turned 15 and rarely had a cold during his lifetime, nevermind any serious illness. He is a high school soccer player, basketball player and baseball player. All A's (except English!), nice, down to earth kid!
It was pretty much what I wanted to hear (that he would never have another one)so we just started going back to life as normal. I was a little nervous, but not him!
On 01/09, about 3 weeks later, I got a call from his school saying he had a seizure during class. I skipped the pediatrician and went right to Childrens Hospital in Boston. After an EEG and MRI (both normal)he decided to start my son on Lamictal.
From what I thought I understood, as soon as my son is at the proper dosage, the seizures will stop. (He had another 01/19).
After spending most of today reading online about epilepsy and Lamictal, I am starting to worry the seizures will never truly go away. Does anyone have experience with being on medication and it working? Will my son spend his whole life changing medications and having seizures?
He is looking forward to getting his drivers license next year and continuing school sports and all other activities he used to do. Im afraid to leave him alone for 2 seconds!
Re: New Here, Worried/Concerned...Please Help : (
Submitted by txrhb1 on Fri, 2006-01-06 - 15:56
Hi Anne, I am so sorry you are having to go through this with your son. My 22 year old daughter began having seizures when she was 9 years old. As in your case, there was no history of epilepsy in her family at all (she is my foster daughter). She has been through many different medications and has found more success with some than with others. During her adolescence and teen years, it seemed like we were always having to switch dosages and meds because of hormonal and growing issues. I also have epilepsy, so I understand from the patient's side how it feels. There are many treatment options available to your son. You must be his biggest advocate, and make sure you are comfortable with the treatment plan and the concern of the doctors. I would suggest finding an epileptologist (neuro who specializes in epilepsy). This forum is a great place to get lots of info and support, so I would encourage you to keep posting, asking questions, and looking for info. I have learned so much from all of the wonderful members here. ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo