A FORMER Darling Downs man living in Los Angeles read Rhonda Miles' story and offered his support. He shares his daughter's story:
MY son was born without complications during pregnancy or birth.
He was that perfectly healthy baby and toddler, who was advanced in walking, speech and motor skills.
Out of the blue when he was two-and-a-half years old, he had a grand mal seizure.
It was considered a "fluke" seizure when he was taken to the ER only to have another one a few months later and then another and another.
After his fourth seizure he was diagnosed with Myoclonic-Astatic Epilepsy or Doose Syndrome.
Here is how Doosesyndrome.org explains this disease: "Myoclonic-Astatic Epilepsy (MAE), or Doose Syndrome, is an epilepsy syndrome of early childhood that is often resistant to medication."
For this reason, it can be difficult to treat.
As time went on and medications (seven in total) failed to relieve the seizures at all, we started trying combinations of drugs to see if that would work.
- Toowoomba mum petitions for medical cannabis reform
- Support for mum's fight to legalise medical cannabis
- Toowoomba mother joins fight to legalise medical cannabis
At its worst, he was having 25-30 clinical seizures a day, some grand mal, some drop seizures (atonic).
I should also mention we tried almost every diet too, except strict ketogenic as this comes with other side effects.
The pharmaceutical drugs he was on had terrible side effects making life even worse for him and the family.
After a year of terrible seizures I decided to start looking at what else we could do.
I took him for a second opinion at the Children's Hospital of Los Angeles and they confirmed his diagnosis and didn't have anything else to suggest.
He was not a candidate for brain surgery to remove the seizure causing part of the brain as the seizures were coming from many different lobes.
I then started looking at natural routes I could possibly try, so had extensive testing done, hair analysis, checking for toxic metal poisonings and you name it.
As you can imagine any mother is, I was on a mission to solve these seizures (in amongst being heart broken seeing my son like this).
Our neurologist had just given me the results of his last 24 hour EEG and it was not good news.
I begged him for other solutions we may be able to try.
He mentioned that I could check out CBD (cannabis oil) but that there was nothing but anecdotal stories on it for seizures and no evidence, but that it had worked for one girl (Charlotte Figi).
So, there I went on a mission to research this all further.
I got hold of the Realm of Caring in Colorado and spoke to some parents through their ambassador hotline (parents who help answer questions) and got onto their waiting list for cannabis.
Their waiting list was six to nine months and I couldn't stand the thought of waiting that long, so ventured to find somewhere else I could get it.
Not only did I need it in a consumable form (my son was three years old at this time) but I needed it to be non-psychoactive.
So I started calling all of the medical marijuana dispensaries in Southern California and finally found one with a tincture.
It was whole plant extract with high CBD and low THC.
I think the first bottle I got was 15.6mg CBD/0.5mg THC.
I got our neuro to write me a prescription, went and got a medical marijuana card for my son and purchased it.
I am happy to say that the rest is history.
I have never touched a drug in my life, nor has my husband, so to say that I was scared to give this to my son is an understatement.
Our doctor had never prescribed this before, so didn't know how much to tell me he should take.
I gave him one drop the night I got it delivered.
He has never had a seizure since.
He had 30 the day before.
So is it a miracle?
To my family it has been.
Not only has he been seizure free for almost a year (April 11), but he is now four years old with a six year old's development.
He is advanced in pre-school, moving to kindergarten about one-and-a-half years early and sharp as a tack.
He has no side effects from the CBD at all.
He sleeps and eats well and is an active and well behaved boy who I am so happy to have back as a normal child.
I hope this story helps others.
I am not a pro-marijuana user.
I am actually totally against weed as weed.
But there are people who need cannabis for medical reasons. It is non-addictive and natural, created by Mother Nature for a reason.
The medicine I give my son is organically grown locally, not created with chemicals in a lab.
I feel much safer giving him low THC cannabis than I ever did giving him pharmaceuticals.
- All names have been withheld at the request of the family.