I have started this post three or four times already and have started over again when what I want to say doesnt seem to be coming out right, so- here I go again: November of 2013, one of Ollys followers sent me this ink: https://youtube/watch?v=ciQ4ErmhO7g She said, I know it is controversial, I know it is not something everyone would consider, I know that this WORKS... please just watch this. So, I did..... and I cried for about 2 hours after that. Then I started researching this MEDICINE, because that is what this is, and its effects on kids with seizures and kids with cancer... even on kids with LCH. What I read astounded me. Then I started calling other parents who had stepped out and had started giving their child this medicine. It took us MONTHS of research before I started thinking: Maybe this will help Olly. You see, we are more natural minded than most anyway, but there is a HUGE stigma surrounding this medicine and there is controversy in using it for children and I really did not want to be called a bad mom or have someone think negatively of our family..... BUT my baby is worth it. We thought his seizures were controlled seeing as he was only having 1-2 a day.... But really, seizures are controlled when you only have 1-2 a MONTH, if any. So in reality, they really were not controlled... the neurologist just kept giving him more and more and more medicines to try to control them and they would go away for a bit then just come right back. Then, this past June, Olly had his most scary seizure attack to date, seizing at church repeatedly and then he went into respiratory arrest. We spent time in the hospital and yet ANOTHER anti-convulsant med as added to his regime. He sleeps so much from these meds, he is so lethargic and he cannot be a normal little boy. Then he had ANOTHER seizure attack while at Nanas in July and had to go by ambulance to the hospital AGAIN. This was the last straw for David and me and we talked to his neurologist about Cannibidiol Oil- AKA CBD Oil- AKA Medical Marijuana Oil for Olly. We totally expected his doctor to say NO after all, doctors are ruled by and paid by pharmaceutical companies- or so we have always been told. When asked, we were told of THIS study: ucsf.edu/news/2014/02/111641/marijuana-derived-epilepsy-drug-clinical-trial-children-uncontrolled-seizures We were referred to UCSF for this study... But as you remember, there was a paperwork snafu and we missed the deadline to be in the study.... Because of this, I was allowed to speak to the doctors in UCSF and the docs told me where to GET this med- which is completely LEGAL here in California- and the process to obtain the prescription so that we would be able to obtain it..... there was only ONE problem- we need a MDs recommendation/prescription.... and his neurologist refused to write it. So, we spoke to his pediatrician. He agreed that we should try this medicine- he was willing to write it for us... But then his brother called him with devastating news and he had to fly out of the country. We spoke to our back up pediatrician, he said that while he knew it showed real promise, he had never written a recommendation before decided he was not going to do it. we were told about many docs here in town and out of town who had been known to write for for this medication.... all of them- all 130 of them- told me NO, that he was two little and they did not want to be the one to write it, though every single one of them said that he would benefit from this medication. So, round and round we went trying to get SOMEONE to listen to us and to step forward and be willing to hep not just say it would be good. Today, I met with a doctor whom we love and respect and who we trust implicitly..... He has been researching this for children for a long time. He agreed and I had the recommendation- as well as 20 doses of this medication- in hand when I left his office! Unfortunately, there is not a single insurance that will cover the cost of this med. The cost from the supplier in Oakland is $85 per 3.5g syringe full. Olly will need about 7g per month. That is only $170 per month for the med, but to get it we will need to travel to the Bay area once a month.... that will be about $100 in gas and it will be at LEAST a 14hr day (about 6.5hrs there and back) so we will need to factor meals in... we are guessing that this will be about $350 per month depending on if it is just David and me going up there or if we have to take the kids with us. This will be a HUGE financial burden on us, but again MY BABY IS WORTH IT. Tonight, Olly took the first dose of this med... a drop about the size of a grain of rice.... along with his other meds. We are not stopping his other meds.That would be totally irresponsible. We are keeping his pediatrician, oncologist, and neurologist all in the loop... That way, if he responds to this med we can safely wean him down from the pharmaceuticals he is on. I am going to continue to document his progress, only I am praying we will once again be able to count the days of NO SEIZURES! Please know, this medicine WILL NOT MAKE HIM HIGH. The chemical THC, the psychotropic, is not present in this medicine. I know a lot of people have a lot of opinions on this subject- it is a controversial one. All I ask is that you keep your opinions kind and your words civil on this pge, please remember my children read it.... Join us in prayer? Heavenly Father, THANK YOU for the break through of this medicine. Please keep you loving hand on Olly and guide our steps and words for YOUR Glory. In your precious name we pray- Amen.
Posted on: Tue, 19 Aug 2014 03:30:46 +0000
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