Hi Doctor, My name is Ganesa. I am livin
Dear Doctor: Hi Doctor,
My name is Ganesa. I am living in Melbourne (Australia) with my family. I got 2 kids. My elder one is 8 years old (Jayakarthik) and he was healthy, active and smart, but in first week of December he suddenly got sick like viral fever and that went away in 3 days. 2 days after he got recovered from fever he suddenly got seizure (not with jerking), then we rushed to emergency nearby and then got transferred to Monash Children's hospital. His Seizures were uncontrollable with any anti-seizure medicines, so they put him on induced coma for 72 hrs.
Meanwhile, after they made sure it is not caused by any infections, they started him with steroids along with continuation of his other anti-seizure medicines. Once he was awake from coma in 2-4 days, he seizure re-appeared but got controlled with additional anti-seizure medicines and also they infused IVIG doses. After a month in ICU he then got transferred to general ward for about 2 months, when his seizures were up and down.
They still suspecting it could have triggered by some infection that might have gone but caused this condition!
Now still he is getting mild seizures (around 6-8 times a day for about a 2-3 mins long) with few seizure free break periods in between. They had weaned off steriod in January and realised IVIG is of no benefit and he is on strict Ketogenic diet, all starting January. So currently he is on following meds on top of this diet:
--> Levetiracetam (Keppra) - 600 mg/day (planned for wean off but struggling)
--> Sodium Valproate - 800 mg/day
--> Clobazam - 20 mg/day+
--> Topiramate - 1260 mg/day
--> lamotrigine - 75 mg/day
They are suspecting it as FIRES (rarest brain disease) because all the test results turned out as normal and also MRI scans didn't capture any structural fault! I am attaching his medical summary report for your reference.
Trialing on CBD oil is in discussion.
So we seek your insight in this case and guide us with your expertise.
Thanks & Regards,
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