Seizure Treatment for Olly
Donation protected
Olly is a little boy who has battled more in his short 4 years than most of us will in a life time: death of his twin sister, preterm birth, NICU stay, mysterious ailments incuding skin lesions, broken bones, throat surgery cardioversion, failure to thrive, gastorinstestinal distress, excess vomiting, hypotonia, pain of unknown origin, seizures, and others... all before he was 16 months old. At that time, a lump appeared on his shoulder and after trying to get it diagnosed for 2 months, he was diagnosied with Mulit System High Risk Langerhan Cell HIstiocytosis (a rare cancer/autoimmune hybrid), Diabetes Insipidus, Celiac Disease,and Epilepsy.
After 18 months of chemo and steroids, Olly gained remission over a disease they said would kill him in 2 weeks!
Olly is left with a few residual effects of his treatment- namely complex partial seizures (Epilepsy).
I started a Facebook page so others could follow his journey and
November of 2013, one of Olly's followers sent me this ink:
The surprising story of medical marijuana and pediactric epilepsy: Josh Stanley at TEDx Boulder
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 while on two high powered anti-convulsants.... 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 Nana's 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:
Marijuana-Derived Epilepsy Drug in Clinical Trial for Children with Uncontrolled Seizures
We were referred to UCSF for this study... But 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 MD's 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.
On Monday Aug 18, 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! He told me it works different on everyone, but to expect to see results in as little as 24 hours... I am excited to tell you- OLLY HAS BEEN SEIZURE FREE FOR 48 HOURS AND COUNTING as of writing this on Aug 20.
We are going to KEEP Olly on this med. It is seriously the ONLY thing that has worked for him. 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 $150 in gas and it will be at LEAST a 14hr day (about 6.5hrs there and back) if we cannot get a hotel to stay overnight, so we will need to factor meals in... we are guessing that this will be about $600 per month depending on if it is just David and me going up there or if we have to take the kids with us. (including the CBD Oil, gas, hotel, and meals) We are estimating $7200 for one year of CBD Oil treatment.... This will be a HUGE financial burden on us, but again MY BABY IS WORTH IT.
Would you please concider helping us to keep our little boy seizure free so he can BE a little boy? Thank you so much!
If you would like to follow my son's journey, his face book page is: https://www.facebook.com/pages/Praying-for-little-Olly/336616463033181
After 18 months of chemo and steroids, Olly gained remission over a disease they said would kill him in 2 weeks!
Olly is left with a few residual effects of his treatment- namely complex partial seizures (Epilepsy).
I started a Facebook page so others could follow his journey and
November of 2013, one of Olly's followers sent me this ink:
The surprising story of medical marijuana and pediactric epilepsy: Josh Stanley at TEDx Boulder
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 while on two high powered anti-convulsants.... 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 Nana's 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:
Marijuana-Derived Epilepsy Drug in Clinical Trial for Children with Uncontrolled Seizures
We were referred to UCSF for this study... But 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 MD's 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.
On Monday Aug 18, 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! He told me it works different on everyone, but to expect to see results in as little as 24 hours... I am excited to tell you- OLLY HAS BEEN SEIZURE FREE FOR 48 HOURS AND COUNTING as of writing this on Aug 20.
We are going to KEEP Olly on this med. It is seriously the ONLY thing that has worked for him. 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 $150 in gas and it will be at LEAST a 14hr day (about 6.5hrs there and back) if we cannot get a hotel to stay overnight, so we will need to factor meals in... we are guessing that this will be about $600 per month depending on if it is just David and me going up there or if we have to take the kids with us. (including the CBD Oil, gas, hotel, and meals) We are estimating $7200 for one year of CBD Oil treatment.... This will be a HUGE financial burden on us, but again MY BABY IS WORTH IT.
Would you please concider helping us to keep our little boy seizure free so he can BE a little boy? Thank you so much!
If you would like to follow my son's journey, his face book page is: https://www.facebook.com/pages/Praying-for-little-Olly/336616463033181
Organizer
Shannan Taft Ajluni
Organizer
