If you follow Emma's Facebook and Instagram you probably have seen that Emma has been struggling with epileptic spasms seizures since Sept. We have tried adding zonisamide along with to her CBD oil but still nothing was working. So as most of you know we tried switching up the CBD oil and ordering a new brand. We got the new brand and things started to look up after about a week. The spasms were going away. But that only lasted for about 2 days and then the biggest shock happened....Emma started having tonic-clonic seizures again.
***Tonic-clonic seizures (formerly known as grand mal seizures) are a type of generalized seizure that affects the entire brain. Tonic-clonic seizures are the seizure type most common associated with epilepsy and seizures in general, though it is a misconception that they are the only type. Emma has struggled with three types of seizures....tonic-clonic, infantile spasms, and epileptic spasms (these are similar to infantile spasms but they don't follow the same brain pattern.)***
Brandon and I were shocked and heartbroken to see this type of seizure return because we hadn't seen them in over a year. The last one she had was on Dec. 20, 2015 and sadly Jan. 15, 2017 they returned. We were so confused. Why???? Why was this happening, what did we do wrong, our hearts were breaking watching her have 6-8 of these a day, they were wiping her out she could barely stay awake. The biggest problem with that is that Emma's seizures happen during her sleep/awake cycle so by not keeping her awake due to seizures it was actually causing more. Finally, late one night as I was crying myself to sleep begging and praying that Emma will get a good nights sleep without seizures. Something clicked in my mind and I ran to the fridge, where we keep the oil, and I grabbed both bottles of oil (the old and the new). I started reading everything on the bottle, including the fine print and this is where the story takes a huge turn. I read that the old oil had almost DOUBLE the cannabinoids than the new oil.....OMG my poor baby is having seizures due to the fact that she is getting half the dose of CBD oil than she was before. My heart was aching this was all my fault that this was happening. I didn't even think twice when we switched oils I just followed the new dosing info
for the new oil. A hard lesson learned but it has brought so much knowledge, like they say you never learn if you don't make mistakes. So lesson learned and we are so happy that we did.
So here we are a week into making sure Emma is at her correct dose of CBD oil and it's working. It's working so well that both types of seizures are going away. In the CBD world there is something known as a reboot, this is where you stop the CBD oil for 24-48 hours and then start dosing again at the dose you saw the best results with. So instead of being too hard on ourselves we are considering this a little (big) reboot.
Without the oil I can't even imagine what Emma's life would be like. If you think about it on half her dose she was having 6-8 seizures a day, can you imagine if she wasn't on it at all??? We fear the reality of if she didn't have access to CBD oil, these seizures could take her life. Some may wonder why not prescription meds well here is why.....it took Emma 8 weeks to get to her full dose of a seizure med that didn't work anyways. So for 8 weeks poor Emma has still having seizures just as many and just as intense. However sadly she still got all the horrible side effects of these prescription meds...cranky, tired, and tummy problems. This happened with 3 different meds taking forever to get to full dose and then not working. Emma is currently weaning zonisamide (since it didn't make even an ounce of difference) and we are seeing the happy girl coming back to us. At one point Emma was on 3 different seizure meds at one time and we didn't have close to the results that we see with CBD oil. We are happy to say that soon again she will only be on CBD oil like she was prior to Sept. 2016.
I hate to say things like this but here goes......here is a list of Emma's seizure activity....
Jan. 15-Jan. 22: on average 6-8 a day (on half dose for about 2 weeks at this point)
Jan 23: 6
Jan 24: 5
Jan 25: 4
Jan 26: 0
Jan 27: 2
*Emma's last seizure was Jan 27 at 8:23 PM and it is currently 4:55 PM on January 29th
As you can see CBD oil is a true blessing, it is a natural medication that has zero side effects and is helping our child gain her life back. As we have said before.....
***Tonic-clonic seizures (formerly known as grand mal seizures) are a type of generalized seizure that affects the entire brain. Tonic-clonic seizures are the seizure type most common associated with epilepsy and seizures in general, though it is a misconception that they are the only type. Emma has struggled with three types of seizures....tonic-clonic, infantile spasms, and epileptic spasms (these are similar to infantile spasms but they don't follow the same brain pattern.)***
 |
| This was the first day we started to see the seizures come back |
for the new oil. A hard lesson learned but it has brought so much knowledge, like they say you never learn if you don't make mistakes. So lesson learned and we are so happy that we did.
So here we are a week into making sure Emma is at her correct dose of CBD oil and it's working. It's working so well that both types of seizures are going away. In the CBD world there is something known as a reboot, this is where you stop the CBD oil for 24-48 hours and then start dosing again at the dose you saw the best results with. So instead of being too hard on ourselves we are considering this a little (big) reboot.
I hate to say things like this but here goes......here is a list of Emma's seizure activity....
Jan. 15-Jan. 22: on average 6-8 a day (on half dose for about 2 weeks at this point)
Jan 23: 6
Jan 24: 5
Jan 25: 4
Jan 26: 0
Jan 27: 2
*Emma's last seizure was Jan 27 at 8:23 PM and it is currently 4:55 PM on January 29th
****KNOCK ON WOOD****
As you can see CBD oil is a true blessing, it is a natural medication that has zero side effects and is helping our child gain her life back. As we have said before.....
*CBD OIL IS NOT ONLY LIFE CHANGING BUT LIFE SAVING!!!!*
We pray that more and more people can gain access to CBD oil or medical cannabis. Everyone deserves the choice on how their diagnosis should be treated and with what form of medication....yes this is a MEDICATION! Please Share to create awareness for CBD oil! FIGHT FOR ACCESS!
 |
| Finally seeing smiles again over the last 3 days! |
*We pay for Emma's CBD oil all out of pocket. We have started to sale t-shirts to help us with the cost of the oil. This fund is currently still open for about 24 more hours (it will end January 30th). Thanks to all those who have purchased an Embrace Life Emma shirt. Creating awareness by wearing your shirt on Feb. 28th (Rare Awareness Day), March 26 (Epilepsy Awareness Day or Purple Day), if you plan on attending the Brainwave on Team Embrace Life Emma, and lastly just to support and create awareness for Little Miss Emma. http://bonfire.com/embrace-life this is the website that you can purchase your shirt from...so many choices of style and colors, even youth sizes. Thanks again for you continued support.
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| Shirt Options - click link above to see more |
EMBRACE LIFE
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