Monday, February 6, 2017
I know it's February but this is a story I have to tell. Not only for Hope, but to ensure you that in everyone there is someone.
As Christmas 2016 rolled around it was time for Carly to pick out gifts at her school. As with all the kids, she got to go to Santa's workshop to pick her family out gifts. As she was wheeled around the "store" her teacher picked out a few things that she thought Carly may like for her two siblings and parents. She picked up two items, showed them to Carly and whichever one she showed interest she kept. Keeping the one she had interest in she picked up another gift to make certain it was what Carly wanted for her family and each time she went to the same gift.
As we all opened our gifts at Christmas Amy and I sat in amazement and joy. Carly had picked out a basketball for her brother and a Peppa Pig stuffed character for her sister. Why is this amazing? I'm glad you asked.
It just so happens Colton was playing on a basketball team for the very first time and that is all he talked about around Christmas. And the gift that amazed me the most? Peppa Pig. No way for her teacher to even think for one second her sister watches that cartoon yet she picked one out. Why did she pick it out? Simple. Carly and her sister watched Peppa Pig every night before bedtime as they lay side-by-side.
This was definitely a life event for me. While driving home one night, I parked my truck, went into the bedroom where Amy was and I balled my eyes out. Cried for at least 5 minutes. This was God letting me know there was a girl inside that broken body. A girl wanting to play with her siblings. A little girl wanting to bake cookies with her mom and have a tea party with her daddy. But she can't. A disorder stole that from her. Her body and brain won't let her do those "typical" kid things. But that same disorder didn't steal her love for her family.
I tell you this so that you will know the next time you see a child or adult in a wheelchair, non-verbal, making noises, clapping their hands together, wearing diapers and you think to yourself they are worthless...Stop. There is someone in everyone. Everyone doesn't look the same as you. They don't communicate the way you do. They don't believe everything you do. But I promise they LOVE the same way you do, all you have to do is love them back.
Wednesday, July 20, 2016
Ever since the passage of Carly's Law I always wonder what stories are out there regarding CBD and the passage of the law. Of course I read what UAB has published but those are just numbers. Are people really getting help from UAB? Numbers are nice to see but hearing the personal stories are always touching and reassuring the fight was worth it in 2014 and beyond.
Just the other day a mother was talking to my wife, Amy. She told Amy how thankful she was that Carly's Law happened in 2014. She continued to tell her that her young daughter, who has Autism and Epilepsy, had gone from having 20-40 seizures per day to only having 1-2 per week thanks to being in the study at UAB. As soon as I heard this news, I said a silent prayer thanking God for the path He laid for her daughter. Before Carly's Law came along this poor child was suffering non-stop and for her to find relief is such a blessing. More evidence that CBD is medicine and that Carly's Law helped pry her away from the grip of misery. I pray it will continue.
Wednesday, May 11, 2016
It's been awhile since I last updated on Carly's treatment with CBD so I wanted to catch everyone up on Carly's progress.
A few months back we found out that Carly's liver enzymes were elevated and there was a possibility if those enzymes were not within acceptable range she would have to come out of the study and cease taking CBD Oil. After receiving this news we started to do a little "momma bear" research about CBD and other Anti-Epileptic Drugs(AED) and possible interactions. After seeing posts and asking questions from many other families whose children were taking CBD it was discovered that a possible reason for elevated liver enzymes were because the CBD Oil was being given too close to her other AEDs. At the time Carly was taking CBD along with her other medication at the same time. After reading this new information we started giving Carly CBD Oil at least three hours before her other medication. It wasn't until a liver panel was completed did we find out her liver enzymes were back within normal range. We wholeheartedly believe the reason they went down were because the CBD Oil was given alone, without other medication. We informed the doctors at UAB who made note of this.
Since Carly was able to stay in the study she has been taking 1.7ml of CBD Oil twice daily. A few weeks ago we started noticing when Carly was laid flat on her back she would begin staring off into the distance and seem "out of it" for several seconds before coming back to normal. As with any indication of possible seizures we notified the doctors and set up an EEG.
During the EEG it was confirmed Carly has begun a new seizure type, Absence seizures. They are only triggered when she is laid flat on there back and we have not noticed them any other times. After meeting with Carly's primary Neurologist for him to read the EEG with us he informed us Carly's EEG looked a lot better than it did prior to CBD. He specifically pointed out that the background of her EEG was almost like a typical 5 year old child's however it was still slower. To us that is a huge win. I never will forget hearing the same Neurologist tell us Carly's background was very slow and abnormal so hearing this news was a blessing. Of course, she still has CDKL5 but a win is a win. Even though she has a new seizure type, it was agreed upon by her Neuro and us not to start another drug to fight those. Carly will stay taking only Topamax and CBD Oil to control seizures.
We still believe Carly has improved cognitively since being on CBD. Though she is not seizure free she has gone from 200-300 per day(visible myoclonic) to approximately 4-5 per day(visible).
I don't believe CBD Oil is a cure all or will work for everyone, but with the results we have seen thus far, it is hard to deny anyone the right to try it.
Thursday, January 28, 2016
Around noon today we found out Carly's liver levels are elevated. The AST and ALT results are getting too high and those levels will need to be monitored even closer. If her levels become 3x the normal levels she will have to stop taking CBD oil permanently. The next time those levels will be checked is early March which is sooner than normally scheduled.
There is a chance her levels drop back to normal and she can continue taking CBD Oil. We will have to wait and see.
Tuesday, December 8, 2015
A 58 year old Hoover, AL man has been living with intractable Epilepsy for almost half his life. For 25 years he has been trapped. Trapped by seizures. Not only did it affect him, it affected his family. He tried several experimental treatments that had life altering affects. It wasn't until he was able to use CBD Oil via Carly's Law and UAB did his life change. He has gone from having four seizures per day to only one every two weeks.
Here is what his daughters posted on FB:
"For the first time in 58 years my father has a normal life"
"I think the most amazing detail of this was waking up to see Dad crying tears of joy from being able to physically dream again and restore lost memories"
Not much more I can add to those powerful statements.
When it is time to take another step forward, in the use of Cannabis Oil as medicine, I pray our lawmakers, state and federal, will read and remember what his daughters said about their Dad.
Thursday, October 22, 2015
I'm often asked if I know any one else who is seeing positive results from taking CBD Oil. I always tell them I know some it's been helping and some it has not. But take it from a doctor if CBD Oil is effective at seizure control for those taking CBD.
"I am surprised at how good of a response we're seeing" - Dr. Jerzy Szaflarski, UAB
Are we still going to deny access of this medicine to more people? Are we still going to restrict doctors from looking at this treatment for more disorders? Are we going to allow lawmakers to tell parents and doctors how to treat their child or patient when everything else has failed?
The answers are up to you and me.
Link to full story by Fox6 News Melanie Posey here:
Thursday, September 24, 2015
I wanted to make a quick post regarding Carly's Anti-Epileptic Drugs. I am happy to say that she is 100% off of Vimpat. She had zero side effects from this wean.
This is great news for Carly and her fight against Epilepsy. She is still taking Topamax and Valium. Her next visit is in a week or so and I will report back then to see which drug we will begin taking her off of next. We are striving to see the day of mono therapy meaning only taking one AED which we hope will be CBD Oil.