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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: New Here, Worried/Concerned...Please Help : (
Submitted by angel_lts on Mon, 2006-01-23 - 07:39
I am sorry to hear about your son. Make sure you keep track of everything, food, sleep, seizures, time they are happening...Also make sure he has had blood work of calcium, magnesium, b complex, blood sugar and sodium levels.
take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/
Re: New Here, Worried/Concerned...Please Help : (
Submitted by Tommysmom on Mon, 2006-01-30 - 09:19
Hi Anne, I am also new to this. I have a 8 month old who was diagonised at 5 months. There is no epilepsy on my side of the family or on my husbands side of the family. My son seemed to be a normal, healthy and happy baby. I agree with all the Moms who wrote in before me....be aggressive with your sons treatment. I also found that writing everything down really helps at the doctors and as a release...it is good to get things out. My son was put on ACTH for almost 2 months. It made him cranky and he didn't sleep well. He also gained a lot of weight. It did not stop the seizures. He is also on Kolonapin. They just put him on Topamax. He has been on that for about 2 1/2 weeks. The seizures during the day have lessened but he is awakened at night by the seizures and he experiences head bobs throughout the day with no notice. He is also on Zantac because he has acid reflux. We are going for a 24 hr video EEG soon. Maybe that will shed more light on our situation. You can email me any time at zeets30@aol.com. Good luck to you and your son! Patti :)
Re: Re: New Here, Worried/Concerned...Please Help : (
Submitted by boychildsMom on Sat, 2006-02-11 - 08:38
Hi, Your story sounds like mine, my 15 almost 16 year old son was at basketball practice and his coach called because he appeared to black out for a few seconds each practice, took him to the doctors numerous times, they said he needed to sleep more. Finally he had a blackout where he fell to the floor, in the Er they diagnosed it as Absence seizures and put him on 1000 mg of Depakote. # weeks later he had a grand mal seizure, I too called 911 and had him in the er. They increased his dose to 1500 and a week later he had anothr grand mal, raised med's to 2000 per day. They ran an sleep deprived EEG and showed high epileptic activity. A week later I was called on the phone to tell me he has primary generalized epilepsy. I have seen an epileptologist and she said basically he needs to stay on the meds, they seem to be working but I worry about long term. They released him to play B-Ball and Tennis but no football or soccer due to possible trauma to the head causing more seizures. He was also told not to ride his bike, helmet or not. Travis is also looking forward to his learners permit but he won't be getting it any time soon. I will be overly cautious about putting him behind the wheel. My major problem is getting him to be responsible for this disorder, taking the pills on time and also 3 times a day at the right times and to go to bed and sleep! Sleep deprivation appears to be critical with this disorder. I also wanted to know if he would outgrow them, because it seems like alot of teens all of a sudden start having seizures, is it linked to puberty? Do you know the only way they will know if he's ok to stop taking meds is to wean him off and if he has another seizure put him back on the meds? Not very scientific if you ask me! I spent the weeks after his seizures wide eyed and awake, lost 10 pounds and looked awful. I had to go back to work but think of him every minute of the day. I hope this helps, realizing there are other parents going though the same things. They seem to be better about this than the Mom's, Travis keeps telling me to chill out and stop following him around. I did buy a baby monitor and he leaves it on and I was sleeping with it on but I am doing it less and less mainly because he seems to be taking the meds and sleep a bit more seriously. I know how scared you were, take care and write back, Lilian