A little quick seizure background on Emma....Emma started having tonic clonic seizures at 4 days old, later on before we started CBD oil she also developed Infantile Spasms and focal seizures as well. Over all in her 5 years we have seen about 5-6 different types of seizures.
Emma's CBD journey started at 7 months old. Here in Utah a law was passed, HB105 Charlee's Law which allowed Emma to try CBD once she failed over 3 seizure meds. It helped her a ton and we were seeing great results with zero seizure activity for 1.5 years. But then at around age 2 tonic clonic (aka Grand Mal) seizures return full force and we couldn't figure out why. Come to find out the CBD company we were using changed their formula and didn't inform its costumers. This was heartbreaking for us so we asked the company for a lab report and they wouldn't supply us with one. That to us was a HUGE red flag so we switched to another "reputable" company that we had heard a lot about. Tried it for 6 months and we just didn't see any results, we also weren't supplied a lab report or help and guidance on dosing. So at this point we were frustrated.
Emma was now on 5 seizure meds plus the ketogenic diet and she was still having 20-25 seizures a day. We felt lost and confused we were losing our baby girl to seizures, her body was shutting down she couldn't take all the seizures and medications. She lost her smile, her laugh, her ability to sit up (propped sitting on her own), her babbling, her ability to safely eat by mouth, and she even lost the ability to have the strength to breath on her own at times.
Finally in March 2018 we decided to try one last CBD oil that we had found in our research, Haleigh's Hope. They not only supply you with a lab report but you need that lab report to find the proper dose to be given. They also supply you with a dosing information video and a dosing calculator. This was heaven sent not only were we getting the proper help but we knew exactly what Emma was getting because we now had an official third party lab report with every bottle/batch number. They also have other documents to help you with dosing guidelines and medication interactions. Emma's seizures started to decrease and we started to wean medications that were really hard on her body like onfi. Over the course of the year we finally got Emma off all her seizure meds except one that we felt was helping. We even weaned the ketogenic diet. Emma now has amazing seizure control and is only on vimpat and Haleigh's Hope. Emma started to smile again late 2018 and started to laugh again in 2019. It took years to get her smile and laugh back, Even her cry took years to return. She can also start to taste by mouth again. Her cognitive ability has also increased thanks to Haleigh's Hope. Never ever did I think back in 2017 that in 2020 our little Emma would be learning how to communicate with us through an eye gaze device. Haleigh's Hope has saved her life.
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| This was Emma for a year....heartbreaking |
Finally in March 2018 we decided to try one last CBD oil that we had found in our research, Haleigh's Hope. They not only supply you with a lab report but you need that lab report to find the proper dose to be given. They also supply you with a dosing information video and a dosing calculator. This was heaven sent not only were we getting the proper help but we knew exactly what Emma was getting because we now had an official third party lab report with every bottle/batch number. They also have other documents to help you with dosing guidelines and medication interactions. Emma's seizures started to decrease and we started to wean medications that were really hard on her body like onfi. Over the course of the year we finally got Emma off all her seizure meds except one that we felt was helping. We even weaned the ketogenic diet. Emma now has amazing seizure control and is only on vimpat and Haleigh's Hope. Emma started to smile again late 2018 and started to laugh again in 2019. It took years to get her smile and laugh back, Even her cry took years to return. She can also start to taste by mouth again. Her cognitive ability has also increased thanks to Haleigh's Hope. Never ever did I think back in 2017 that in 2020 our little Emma would be learning how to communicate with us through an eye gaze device. Haleigh's Hope has saved her life.
I want to clear up some misconceptions in regards to CBD and answer some common questions that I get often......
"Epidiolex is CBD why not save money and let insurance pay for it?
First of all Epidiolex is NOT real CBD.....it is a lab created single molecule drug.
To be completely honest after doing our research we came to the decision that we would rather pay out of pocket for CBD forever, rather than to use Epidiolex. We did a lot of research and this is some of what we found....
It contains additives that can actually trigger seizures for some people; alcohol, saccharine, chemical adjuncts and preservatives. Epidiolex is a lab created, single molecule drug, where as a "Full spectrum" cannabis oil contains hundreds of individual components, and science still can not say which ones exactly are responsible for seizure blocking activity. Full spectrum has Terpenes, terpenoids, antioxidants and multiple level cannabinoids, which all feed the ECS in addition to the therapeutic seizure control. Epidiolex does not have these natural components that you will find in a "full spectrum" CBD oil. I have also seen families that have tried this and had awful side effects. So for us its just not worth it!
Is CBD really a miracle medicine?
Absolutely CBD is a miracle, HOWEVER miracles take time and that is one thing that most people forget when trying CBD. Seizures are a powerful thing and getting control of them takes time. Trying CBD for a month in my opinion is honestly not even trying. CBD takes time, you should only increase your dose for CBD every 2-3 weeks (I prefer 3 weeks) if you increase too much too fast you will miss your sweet spot and too much can actually make things worse. Slow and steady and less is more is the key to effectively using CBD. To find the dose that works perfect for Emma took almost 8 months so don't give up an give it time, weeks or a month is just not enough. Don't get me wrong some do see immediate results but those like Emma with a complex seizure situation it could take longer.
How do I dose CBD with other medications?
CBD is best dosed 2 hours apart from any other medications. There are some seizure meds that it can interact with that you will want to watch closely and one of those is onfi (can be very dangerous). This was another thing we learned about from Haleigh's Hope as they also give you access to a document with known medication interactions. They really care about you and want to help you on this journey.
What is Emma's dose we want to try CBD?
Every person is different so this is one question I do not answer because Emma's dose will not help you or your child. Your child needs a dose based on his/her own weight and needs.
Why does Emma use CBD oil?
At first it was for seizure control, but we started to see cognitive skills improve as well as muscle tone (not so stiff)
In regards to Haleigh's Hope, what is the difference between the oil with safflower and the one with coconut oil?
It's honestly just preference. We use the one with safflower because you don't have to shake it, it doesn't separate and in my opinion not as sticky. This means it doesn't stick to her gtube extension as much as the coconut oil does. We had an issue with the coconut oil one sticking in the line so we switched and no issues. However, if taking by mouth I hear with coconut oil tastes better.
Do you give by mouth or gtube? If gtube how do you make it not stick to the extension?
Yes, we give through gtube; first we use with safflower (as mentioned above) which helps a ton. But we also flush with warm water at least 24-36mls of water. Sometimes we even flush with food and that helps too. Some people choose to also give it directly into the button but we choose to use the extension as we had too many issues the other way. On a side note we did give the oil by mouth at one point when her dose was super small, its still small but she drools it out before it could be absorbed into her body so we lost a lot of it. Started to give through gtube and results improved for her.
How often do you give CBD?
For best results CBD should be given 3 times a day. So Emma's daily dose is split up into 3 doses. This can get tricky and we had to change her whole med and feeding schedule around but it was so worth it. We tried giving it twice a day but it just wasn't the same result for us. Emma's schedule is prescription meds at 8:30 am and 8:00 pm. Her oil is given at 11, 5, and 10:30- 11pm (just before I go to bed). This works as it is spread far enough apart from other meds and gives great coverage for the day.
What advice do you have for someone wanting to try CBD?
-Give it time don't rush to increase until its time
-Sometimes it can get worse before it gets better (like with any medication)
-Never use an oil unless the company will give you a lab report
-I also wouldn't use an oil unless the company gave guidelines and suggestions/support with dosing
-Do your research!
Here a link to a great FAQ page provided by the Haleigh's Hope website:
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