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HELP PLEASE FOR MY 9 YEAR OLD SON!
Sun, 11/18/2012 - 23:06Topic: Complementary Therapies
My son Alex began small twitches in his left hand & giggled for a few seconds. After a week it grew into 10-15 second seizures- his left hand up in the air with extreme tension/muscles & shaking while he made sounds like giggling/hyperventilation. In week 2 his both arms flew up, shaking more, seizures more frequent & he began stumbling backward & sometimes falling. After week 3 his entire upper body shakes- his arms out & flexed with so much tension it's like he's hanging from a monkey bar trying to pull himself up. He falls every time and his legs are beginning to extend out & shake also! They happen 4-9x a day plus 2-3 in his sleep as well and he hits his head nearly half the time he falls! WE NEED HELP! He has had a EEG & MRI as well as blood work that has come back as normal. His sleep deprived EEG results haven't come back yet but I expect them to be "normal" as well. I fear these seizures are getting worse. He has been on a low dose of Keppra for 2 weeks- we just doubled his dose a week ago now but there has been no improvements whatsoever. I fear these Keppra side effects as much as the seizures themselves- memory loss, depression, fits of rage etc. He has had some emotional outbursts and crying but its hard to tell if it's due to the stress & nightmare of what he & our family are going through. We live in Ontario Canada- there is a 6 month wait to even see a Neurogist- until then we are expected to drug our child without any diagnosis whatsoever- does this make sense? The paediatrician knows very little & has nothing but a prescription pad! **Has anyone had their healthy happy child just mysteriously develop epilepsy? He is a twin & his sister hasn't any of this. **Has any natural alternative therapies helped? We are desperate for answers.. this fear and anxiety is crippling our family and as parents our fear is certainly not helping our son.
We need help!
Comments
Re: HELP PLEASE FOR MY 9 YEAR OLD SON!
Submitted by Sakiri on Tue, 2013-04-30 - 18:14
Hi, my daughter now 11 years old create her first grand mall after huge stress out we start from trileptol and her behavior dramatically change: from friendly smart lil angel she became aggressive(hit children smaller than her on playground,), anexaity(scary of a lot of thing), slow on her school work, her memory damage, but worst of all she became a cry baby depressed, sometimes she cry for 1 hour strait and we can not stop her crying(her record of crying was 5 hours). more then 4 years we were on trileptal periodicity increasing the dosage,when she was in 4th grade she refused to go to school due of her anexaity, we were on home schooling for one year, finally i was able to change our neurologist, the new one add depacen that improve her behavior and explain that all behavior problem was a side effect of trileptal, but trileptal help stop her seizure. Also while you are waiting for appointment it is really important sleep, stress free and its maybe help some diet try modify atkins diet for seizure(google it)
my best wishes
Re: HELP PLEASE FOR MY 9 YEAR OLD SON!
Submitted by Troy Conners on Wed, 2013-05-01 - 16:07
Rhoni - we were in your shoes about 8 years ago with our then 5 year old daughter. Her epilepsy sounds very close to what Alex is experiencing. She started with a giggle and turning her head, and it developed into full body and uncontrolled seizures after 4-6 weeks. For the most part, her EEGs and MRI were normal (although the MRI showed a tiny area of "undeveloped" brain tissue). It took a few months under the watchful care of Dr. Ajay Gupta at Cleveland Clinic to find the right meds Keppra was horrible for her and didn't seem to work - we took her off of it immediately. Trileptal (with Zonegran added after) was the combination that seemed to work. Her seizures ended altogether 4-6 weeeks after she was in therapeutic range. I'm not sure how to privately get you our contact information - if you desire we would certainly welcome a phone call from you. Good luck.
Re: HELP PLEASE FOR MY 9 YEAR OLD SON!
Submitted by amerline on Mon, 2012-11-19 - 17:33
I'm sad to hear about your son, and sad that no one has written back yet. I'm mom to a 10-yr old boy with epilepsy.
I understand why your paeditrician wants your son medicated -- he is worried that the seizures will get worse and that your son might get hurt. However, I also understand your fears about Keppra. My son has never taken Keppra, but it has a reputation for making kids super irritable. My son was on something else (gabapentin) which caused similar fits of rage and they were a stuggle to deal with. Why did the physician choose Keppra as the first-line drug? I thought that trilepital was the usual first line drug for children.
It make take some time before the Keppra gets the seizures under contorl. Until then, make sure he gets as much sleep as possible (i.e. early bedtime) , stays hydrated and try and keep him as calm as possible.
(try to keep yourself as calm as possible as well)
Good luck
I'm sad to hear about your son, and sad that no one has written back yet. I'm mom to a 10-yr old boy with epilepsy.
I understand why your paeditrician wants your son medicated -- he is worried that the seizures will get worse and that your son might get hurt. However, I also understand your fears about Keppra. My son has never taken Keppra, but it has a reputation for making kids super irritable. My son was on something else (gabapentin) which caused similar fits of rage and they were a stuggle to deal with. Why did the physician choose Keppra as the first-line drug? I thought that trilepital was the usual first line drug for children.
It make take some time before the Keppra gets the seizures under contorl. Until then, make sure he gets as much sleep as possible (i.e. early bedtime) , stays hydrated and try and keep him as calm as possible.
(try to keep yourself as calm as possible as well)
Good luck