Kam is 4 years old. At 2 months he old he was admitted to our local hospital for seizures. During our inpatient stay Kam was diagnosed with MPSI (Migrating Partial Seizures Of Infancy) brought on by the KCNT1 Gene. They put him on 4 seizure medications, because Kam has Refractory (Uncontrollable) Seizures, the meds didnβt work and was having 20+ seizures a day.
Kamβs Epilepsy has made him physically unable to make any body movement. This is why at 9 months old my mission was to get him off all the meds, this is when I weaned him onto Epidiolex (with the help of our Neuro, but unfortunately helped only a short period of time) and began our first supplement, Curcumin Extract. And thatβs how it all began. Going the natural route I was able to figure out what I can give him so he would be able to move his body and lift that cloud he had. Having Microcephaly development is slow, which means Kam needs to be βtaughtβ how to progress. Along the way these supplements reduced the seizures so much that he averages 0-1/2 seizures a day.
When Kam has an increase in seizures, I treat them at home and I update his Epileptic Specialist whenever the next 6 month follow up is. Kam hasnβt been in the hospital for seizures since August 2019 and I started his first supplement October 2019. Doctors donβt do supplements so showing how well Kam is doing the doctors are in agreement and have his full panel of what I give him and bloodwork has remained normal. And if interested all of what I use is in Pub Med or NCBI.
So far Kam is βhealthyβ he still eats by mouth and we donβt have any medical equipment other than Standing/Positional equipment. Kamβs vitals have never changed during a seizure and so far we havenβt had any issues BUT he was going down that road. The seizures meds did not agree with Kam, it messed with him so cognitively that I know we would be in a different place had I not pulled him off. I couldnβt knowingly give him meds knowing what it was doing to him. Research is my background so for me it was a no brainer I knew I could do it, I just had to FIND it.
I really feel what I do with Kam can help anyone (Adults too) who have Epilepsy. Iβd like to share how we got Kam here and hope it will help others. He has a long way to go development wise, but Iβve got his seizures down and heβs moving a lot now and TRYING.