Saturday, July 18, 2015

The Struggle - Feelings from a Parent with a Rare Disorder Child




I came across an aricle last night which broke my heart however I found myself relating to the struggle. The struggle is inwardly as well as externally, one that tests your Faith and Strength. Why does it test your Faith? Because surely God did not intend to give your child a disease/disorder that has no cure OR treatment. Strength? Strength, both physical and mental, is what carries you from day to day. It keeps you from falling to your knees and giving up. 
This quote is one from a mom which embodies the feeling of helplessness sometimes found in rare disorder parents. Full article here: http://bit.ly/1HXr19P

"Sometimes I wish she would have gotten Cancer; at least there would've been a protocol we could've follow," Nicole said. "There is absolutely nothing I can do to help my daughter, and as a mother, there is a lot of guilt."

When your child has a rare disorder(or a diagnosis of anything) all you pray for is help for your child and when you find out there isn't any...it rips your heart out. There is no "map" on how to wage war on what has attacked your child. It is a very bitter pill to swallow. I encourage all parents who are on this arduous journey to remember what God tells us in Proverbs and commit it to memory...
"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths."-Proverbs 3:5-6
As a parent, you know the struggle exists. Respect the struggle. Keep fighting and keep advocating. This is the life God has truly blessed you with and best of all.....
There are cures in Heaven.
God Strong.

Wednesday, July 8, 2015

CBD Update - First EEG Since Taking CBD Oil



Today was a big visit for Carly. She had her first EEG since being put on CBD Oil. To be in the study Carly had to have a recent EEG submitted and that was done a few months ago. They compared that EEG to the one she had today and the Dr. Bebin said there was "definite improvement"!!  That's very big news. Not only are we seeing it in person, her EEG is now proof that CBD Oil works and, in my opinion it's documented. I am not saying Carly now has a "normal" EEG but that there is improvement.

Since being on CBD Carly has seen a reduction of seizures (Myoclonic Jerks from 200-300 per day to 2-10 per day), No Tonic Clonic's and cognitive ability improvement which has been documented with video I have posted on this blog.

While this is a blessing for Carly, I know of many families with children and adults that are not seeing improvement and a few that have been taken out of the study. As we all know this is medicine and like any other medicine, what works for some may not work for others. I pray continually for those children and adults that haven't seen positive results. Though it may not work for everybody I am a firm believer that everyone deserves the right to use CBD Oil regardless of disorder. People have the right to see if this improves their condition and quality of life.

I think it's important to remember the Carly's Law study is paving the way for more doctors to be able to stand behind proof they are now seeing to get this to the masses. Though they may turn painfully slow, I think the wheels are starting to move.

God Strong

Friday, July 3, 2015

CBD Update - After the Rash





I wanted to give a post-rash update. There was no determination on what caused the rash. I believe it had to do with her strep throat. Carly had to go through two rounds of Antibiotics to shake the strep. It wasn't until the second round of antibiotics did it seem to start tapering off. Of course, it could have been some other skin condition too. A Dermatologist prescribed a topical ointment that we have been applying so maybe that had something to do with its disappearance.

Regardless of what caused the rash Carly has been steady. No major seizures since being on the CBD Oil and that continues to be the case. Her myoclonic jerks did seem to worsen when she was briefly taken off the oil, but since being back on they have they have subsided again.

Since we have decent control over her seizures, she is not on the highest dose nor do I believe she needs to be. There is no reason to keep upping the dose of CBD if we have control at a lower dose. A defining moment will come in a week or so when she has her first EEG since being on the CBD. We hope to see a change for the better in her EEG to show concrete evidence CBD is having a positive affect on her brain. Sure, the control of seizures is proof, but it would sure be nice to see a side-by-side comparison of the EEG's which we will see soon.

**Carly's results may not be typical.

God Strong