Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
8 year old various medicines - losing help
Wed, 08/09/2017 - 05:01Topic: Medication Issues
Hi all, need advice from your experience.
Son diagnosed with partial complex seizures at the age of 4 on 2013. The 1st two years child neurologist put him on trileptal(oxcarbazepine) and it was under control for 2 years. The medicine was stopped after 2 years on 2015 however the seizures relapsed immediately. Doctors advised to continue on trileptal however the 2015, 2016 it was never under control and had repeated seizures mainly during sleep time atleast 5-6 times in a month.
Then doctors tried lamotrigine and it was giving him severe tremors for the full body and we tried sodium valproate in both these medications it was not under control. Levipil was tried and it increased the seizures even more...
Right now our family is going through immense stress due to this uncontrolled seizures and the poor little child is suffering due to side effects. Every change in medicine takes 2-7 weeks and that time is totally stressful and full anxiety for us..
Currently the doctor wants to go back again on trileptal and sodium valproate combination and we are worried like hell...
Can some body shared what worked very well for your 7-8 year old so that we can get some idea on how to take this further along with the
child neurologist.
Comments
By the way i also have had
Submitted by Epilepsy_Warrior on Sun, 2017-08-13 - 03:10
By the way i also have had complex partial seizures since I was 5! So I know how you are feeling :( mine was due to a temporal lobe tumor though. My prayers are with y'all!
Thanks for your thoughts.
Submitted by SV on Tue, 2017-08-15 - 14:34
Thanks for your thoughts. Right now he is on 750mg sodium valproate XR and 150mg trileptal. However the side effects are bad like hand tremors, tics and facial twitching etc. We tried all the medicines as given in my original post. When all of these medicines are on lower dose we dont see any side effects but it does not control seizures. When we increase medicines then side effects. Too much stress to handle and losing sleep with worries.
I would research into
Submitted by Epilepsy_Warrior on Sun, 2017-08-13 - 03:07
I would research into epileptologists not neurologists!! Neurologists prescribed me on 13 different medicines in my lifetime and I'm only 23. The moment I saw an epileptologist he changed my life. They know so much more than your average neurologist. Im on lamotrigine XR, because the regular lamotrigine gave me side effects. I also take Adivan (Diazepam) for seizures that I dont come out of, and it helps very well. I wish you the very best and God bless!