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Medications to VNS

Hi all, Am from India (Tamilnadu). My baby is 2 years old who suffering from epilepsy from her age of 3 months old. Drs done Clinical Exome test and found that she is having CPLX(-1) genetic prob and can't help with medicine. Right now we are giving levipil, encorate, cloba, lamosyn, fycompa and no use. She gets seizures 20-30 times per day and in fever times it cross 100 times also.

Now the Dr suggesting for VNS bt they saying they can't say 100% positive result. Am worrying what can do and is it safe for a small child and worrying abt side effects, and cost of the treatment .... Pls need advise on this

Comments

Wow!  Sounds like you have a

Wow!  Sounds like you have a tough situation.  I've not had such frequent seizures nor taken so many medications at once for them.  But the side effects were sometimes awful while the seizures went on.  Statistics suggest that close to 3/4 of us don't get seizure control from the pills and so we are faced with balancing seizures, side effects, and surgery.  Also medical research suggests that the sooner children get the seizures controlled the more likely they are to enjoy seizure freedom in later years.  Doctors can't guarantee 100% positive results from VNS, but given how much she has been through they are probably more sure that pills will never give 100% positive results. 

Hi,Thank you for posting, it

Hi,Thank you for posting, it sounds like you all have been through a lot. The efficacy and side effects with the VNS device varies for each individual. Your daughter’s healthcare team will review what options are possible for her and will help guide you through the proper evaluation and testing, prior to making a decision about surgery.Working together with her epilepsy team is the key to understanding her epilepsy and the best treatment options for her. Review our list of commonly asked questions about epilepsy surgery, learn more about the recovery process and common themes for people living with epilepsy & family members during their journey through epilepsy surgery, here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgeryTo learn more about the VNS device please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/va... It’s also important that you to express any concerns you may have about the VNS device, but feel you cannot talk openly with her healthcare team or that you aren’t working towards the same goals, it may be time to get a second opinion. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/se... .For help finding a specialist near you and for additional resources in your country please visit:https://www.ibe-epilepsy.org/https://www.ilae.org/

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