Update Marijuana Oil trial

The marijuana oil has significantly changed the frequency, intensity and presentation of the seizures. It’s hard to say if it is better when we now have significant breathing issues with each large seizure.

What is amazing is Abbeys increased awareness and ability to learn. I have seen her ability to communicate through voice and hands become clearer. I have seen her stability in walking improve. And at times I have seen her mental endurance be extended.

For us the seizures are hard to handle.
For Abbey she is engaged and demanding of our attention.

As long as her quality of life is greater than the effect of her seizures, we will continue.

Photo: my girl is a little down at the moment. We are watching to see if something eventuates or if it’s another change in seizure pattern.

The Marijuana Trials Update

It has begun and we now wait and watch. I thought I would share how it is proceeding and what we are watching for in case Abbey cannot continue.

The drug is administer via an oil solution which is put down the feed tube into the Mickey Peg. As the volume is so small and the drug is dispersed in the oil, we must ensure it all goes down the tube. We have had to alter our feeding routine to accomodate this.

Previously we would give Abbey her meds whenever throughout the feed. Making it easier if we forgot to make them before feeding her. Now we must ensure the water dissolved meds are given first, then the oil, then the feed. Her feed has some oil based elements to it which will assist in moving the marijuana oil through the tube. The tubes look empty at the end of a feed, so we are confident all of the good stuff is making it to her tummy.

The dose of oil will increase on a weekly basis. It will be each Friday night that the next dose will increase. This means we can watch her closely each weekend.

As there is a contraindication with clobazam, its the excessive drowsiness and subsequent potential shallow breathing we will be watching for. If we see any of this, then we will need to contact the doctor to decrease the dose of clobazam.

The weekly increase of the marijuana oil is the quickest we have time we have altered medications. It will be over a 6 week period. If we make it to the end, then its possible she will be able to take the new drug.

The only other side affects is increase liver function, and Abbeys is slightly elevated at the moment. At the 4th week she will have another blood test to assess.

We are also required to record the seizures, which is an interesting exercise as she has so many and different kinds. Im not prepared to note every single one according to time and presentation. So we are accumulating them into groups of Big Seizures, Jerks, Vacants and Anything Usual.

If it works, we know that Abbeys development will improve. We have seen it before. I saw this video from a horse riding lesson her teacher took, and noted how straight and balanced she is sitting. Im letting myself dream a little bit about what the new drug may allow her to achieve.

It All Happens At Once.

Any special needs family will agree that trying to accomplish anything more than just caring for your children, can be futile. However if we choose to take on a project, with extensive planning around the needs of the children, it will always go off kilter.

After 18 months of planning we have started the front wheelchair deck out front. And it has not gone to plan, who would have guessed?!

On the morning of digging and moving dirt a week ago, the contractor cancelled 20 minutes before starting. James scrambled to find someone else, with no success. He has a week off work to start the foundations, it needs to happen.

Much to his delight, James hired a small excavator to move the dirt and break rock. All week he has been a ‘real’ tradie.

As you know we have also started the marijuana trials, which have been weighing heavily on our hearts and minds.

Today, the seizures are the same. We are onto day 2. Abbey is quite cranky and sleepy which we think is due to the cold and the continuous snotty nose.

We are also watching Abbey closely as there is a contraindication with the drug, clobazam she is taking with the marijuana oil. It can cause excessive drowsiness, leading to shallow breathing. It is possible we will need to decrease clobazam to keep going with the oil.

And to add to this, her liver enzymes test came back high. She will be tested again in a month to ensure no upward movement. If it increases, we may need to stop the trials. In this time I will be finding out why and how to prevent.

Today is the last day of James holidays. The big machine has come in. The original contractor has kindly donated his time to do the final beautification.