Friday, July 1, 2016

It's worth it

From the beginning of Sonzee's journey, Sam and I have been opened to pretty much any type of treatment that someone can present to us.  Even if there is only one person that the treatment has helped, we will give it a go to see if we can help our little bear.  We got a medical marijuana card early on in our journey for Sonze just in case we ever wanted to use more than hemp based cbd oil.  We were not sure we were ever going to "need" the card, but figured it would be best if we had it on hand.  

Back when Sonze was about 7 months, we started with the more well known Charlotte's Web brand and moved on from there when we felt that it was not the best fit for Sonze.  We then went on to try two more hemp based CBD oils.  Both of them came highly recommended, both of them have significantly helped at least one other child with a CDKL5 diagnosis with either seizures, cognitive abilities, or both.  Sadly, for Sonze, none of these seemed to do anything for her.  

After Sonzee's most recent hospitalization, we were left in the middle of a minefield if you will in terms of anti-epileptic medication choices.  It is really a hard place to be when you find yourself staring into the unknown unsure of what type of seizures your child will be up against, the frequency, the intensity and/or the duration; unsure of which drug will actually work.  Is there even one?  Sonzee finished steroids for her Infantile Spasms and hypsarrhythmia back in April, we weaned her Keppra finally in May, and it was just Depakote by itself to hold down the fort.  We were never sure if the Depakote was working for Sonze because her seizures had not really been visible since the steroids.  She had the occasional fragmented spasms indicated by her eye movement, but nothing else that was obvious.  After her blood transfusion eliminated the use of Depakote, we went back to Keppra out of sheer panic.  Neither Sam nor I ever felt it had any sort of control for her and she was always agitated and grumpy on it.  Since this was given to her when she was 3 months old, it was difficult to decipher what was Sonze and what were drug-induced behaviors.  After we weaned her, she was definitely happier, but Sam and I could not (still cannot) agree on the next step drug for her, so as a compromise and "holding drug" we went back to the Keppra.  It is tough to make these choices; I will leave it at that.

We agreed to help her mood and possibly cognitive capabilities we would go ahead and try CBD again.  In the back of my mind, I thought maybe it could help with her seizures, but honestly, it is really draining to put that high of an expectation on something that has already failed her multiple times in the past.  Instead of going back to one of the hemp based CBD brands we had in the fridge, we decided to take a drive to the local dispensary in our area and speak to those who are more knowledgeable.  We settled on a local grown blend and we were sent on our way.  

We started to give Sonzee the oil a little over 3 weeks ago.  Her seizures are back to what they were when she was about 5 months, once every 24-48 hours and lasting around the 2-minute mark give or take 30 seconds.  You might be feeling a bit let down at these words, but let me explain to you the wonder of this little green plant.  Three days ago about a minute and half into her seizure I decided I would see what would happen if I gave her CBD oil during her seizure.  By one minute 46 seconds, she had taken 2 drops and by two minutes and 10 seconds, her seizure was complete.  Was it the oil?  Was it just that her seizure was over anyway?  I am unsure.  Yesterday, her seizure began and at 30 seconds, I grabbed the oil, by 1 minute the seizure ended.  Today, her seizure started, I grabbed the oil, and the seizure stopped.  


The whole topic may be controversial, and people may lend their judgment to us for giving our child this oil, but honestly, I DON'T CARE.  If this oil takes away even 1 second of her suffering, I am on board and it is 100% WORTH it!

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