We have been dealing with it for 16 years...has she actually been diagnosed with epilepsy??
That video sorta looks like what Kacie had, but they called them infantile spasms (which can be very harmful if started early like with Kacie at 6 months) We got them stopped with a drug called Sabril. It was unavailable in the States but I got over the counter in Mexico at the time & we now get it from Canada. I'm just throwing it out there, but we are not dealing with epilepsy.
Kacie has what is called 'tuberous sclerosis' & basically is like non cancerous tumors or calcium deposits in the brain...there is no current cure, but they had all told us since the infantile spasms started so early, she would be dead or retarded by now. We put our faith in God & while she is not out of the woods, she is a sophomore in HS & while she struggles with her studies, she is a Jr Varsity cheerleader & many of her former Dr's are amazed.
NOTHING is impossible with God & He does great work through Dr's but took us a while to find the ones we are comfortable with...I would also HIGLY RECOMMEND looking into seeing (long waiting list but do it!!) with a chap Dr. Kendal Stewart. He is a godly man & works with your neurologist (he actually is one) but now focuses on using nutrition along with traditional meds. Kacie is also on CBD & other high doses of certain vitamins. He does a sort of DNA test to find what they need & is convinced various forms of inflammation need to be addressed to help control the seizures.
All I'm suggesting is keep all your options & mind open...some of the other neurologist we dealt with don't care for Kendal's angles, but his results speak for themselves & his client base is huge. He has been a blessing.
If you are interested, PM me your number & I will have Michelle call you, as it would it be best for her to explain it, as she is the one who has been researching this & takes Kacie to the visits as work doesn't permit me to tag along.
best of luck & God bless...stay positive & have faith.
Paul
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That video sorta looks like what Kacie had, but they called them infantile spasms (which can be very harmful if started early like with Kacie at 6 months) We got them stopped with a drug called Sabril. It was unavailable in the States but I got over the counter in Mexico at the time & we now get it from Canada. I'm just throwing it out there, but we are not dealing with epilepsy.
Kacie has what is called 'tuberous sclerosis' & basically is like non cancerous tumors or calcium deposits in the brain...there is no current cure, but they had all told us since the infantile spasms started so early, she would be dead or retarded by now. We put our faith in God & while she is not out of the woods, she is a sophomore in HS & while she struggles with her studies, she is a Jr Varsity cheerleader & many of her former Dr's are amazed.
NOTHING is impossible with God & He does great work through Dr's but took us a while to find the ones we are comfortable with...I would also HIGLY RECOMMEND looking into seeing (long waiting list but do it!!) with a chap Dr. Kendal Stewart. He is a godly man & works with your neurologist (he actually is one) but now focuses on using nutrition along with traditional meds. Kacie is also on CBD & other high doses of certain vitamins. He does a sort of DNA test to find what they need & is convinced various forms of inflammation need to be addressed to help control the seizures.
All I'm suggesting is keep all your options & mind open...some of the other neurologist we dealt with don't care for Kendal's angles, but his results speak for themselves & his client base is huge. He has been a blessing.
If you are interested, PM me your number & I will have Michelle call you, as it would it be best for her to explain it, as she is the one who has been researching this & takes Kacie to the visits as work doesn't permit me to tag along.
best of luck & God bless...stay positive & have faith.
Paul
<><
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