Marijuana oil update.

Abbey has started the process to come off the oil. Reason? Gastro system is in turmoil and seizures are worsening. She is being weaned over the next few weeks. We watch closely as her system adapts.

Abbey is also not responding well, we think, to the meds to help heal her tummy. A lot of reflux vomiting and issues ensuring her food intake is adequate. More investigations to come.

There is a lot of flux at the moment for Abbey. As always, a big question mark hangs over our heads.

Photo: still being cheeky.

Update Marijuana oil trial

After Abbeys last neurology appointment we have decided to continue for another three months. She is still experiencing hair loss and gastrointestinal issues which when first mentioned to the medical team, they were surprised and not sure if due to the oil. Now we know another child has hair loss. Why? They don’t know.

As for the gastro issues, this is more complicated. Abbey will be going under a general anaesthetic soon to check her insides. It’s common for kids with CDKL5 to develop intestinal issues around the teenage years. We want to see if we can stay one step ahead for the first time, having some idea of what she is heading into.

The seizures continue to evolve and frighten me, to be honest. Today my girl had 2 big seizures in a row. It’s a first, and I was battle stations ready for hospital. She is ok.

But…

She continues to defy ‘them’ all. My girl reaches out to be cuddled. She loudly protest when hungry. She will walk with assistance. My girl continues to make huge strides forward given all that is happening.

(By huge strides, it really means very small steps in development. It’s consolidation of previous development. For Abbey and her family, we celebrate every massively tiny milestone. Today it was clearly advising she was hungry and ‘talking’ about it for a while after, ensuring we understood she was hungry and we were too slow.)

Photo: Given it all, I’m working on ways to shift the brain to another state. It’s hard to find comfort or escape in quiet activities like knitting or reading at the moment. I’m needing to switch the brain to something new. I’ve taken to cooking recipes that take my fancy, to the benefit of those around me. Last week was pumpkin and pomegranate cake, today was popcorn health balls. Bloody sticky mixture.

Thankful for the opportunity

I have not expressed how thankful we are to have the opportunity to trial the marijuana oil. After seeing the 730 Report last night on accessing it, I’m even more grateful.

It will continue to amaze me how beauracracy at all levels of government can determine the health care that parents can provide their child.

Every special needs parents is more vulnerable to this. We are less likely to fight because we are already snowed under. If we do choose to fight the beauracracy, it is done so because our child needs it. It will take our already depleted reserves of time, energy and brain spaces.

Sometimes we need someone to stand along side us. Sometimes we need someone to listen and just explain a decision. Most of the time though, we need someone to answer our questions. And the answer can be ‘I don’t know, but let me find out’.

That statement is very powerful. It leaves me feeling like someone heard, someone cares, someone believes my girl deserves better.

If we don’t win the fight after exhausting all known avenues, and someone was with us. That’s ok.

We may have preserved some of our depleted energy, time and brain space.

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.

Marijuana Ool Update

Abigail heard us all in the kitchen and vocalised she was not happy about that. With assistance she walked with me to the kitchen and stood at the bench chatting away.

The CBD oil has improved Abbey’s alertness and willingness to engage in the world around her. She is retaining abilities and improving upon them. It is wonderful to see my girl an engaged member of the family, once again.

The CBD oil has completely changed the presentation of the seizure. We have gone from status epilepsy for up to 3 days, to highly physical, vocal and difficulty breathing up to 5 times a day plus other seizure types. The seizures are much shorter, but still as life threatening.

Life has changed for Abbey, for my caring role and for the family. It’s a new normal that we are still working through. The highlight of each day is my daughter responding when I chat to her, and my girl showing she wants to be with me.

Update Marijuana Oil Trial

Coming to terms with…

I have spent a week trying to figure out how share the news. Finding a positive angle, a fun story to share or an uplifting antidote. There is none. Im more coming to terms with, ‘what is’.

Update Marijuana oil.
Abbey had her 3 month 24hr EEG to see if there has been any improvement on the EEG. There was none. BUT….. we have seen an improvement in seizure presentation. They are shorter and allow her to engage in school and outings much easier. BUT… its harder on us as the seizures happen when awake or asleep and up to 15 times a day. She is also having trouble breathing at the beginning and can go very pale. We prefer this new kind of normal, compared to weekly episodes of status epilepsy.

So… she is not in a better position medically, just a change in seizure presentation and we have our cuddly, giggly girl back more.

Update palliative care
This is such a heavy topic. We have had a chat with the boys, but their understanding is just not quite there. So we will keep chatting.

Last Thursday we had the most positive doctors appointment at our Childrens Hospital, on the most horrible topic. We now have a phone number to call when we are not sure or if something happens with Abbey. We have a resource to reach out to. This lightens my load. There are more conversations to come.

She has been accepted to Hummingbird House which will provide us with overnight respite, something we have never had in our 12 years as carers.

Its a new kind of normal now. Preparing for the worst, while enjoying the present. More resources, more people. It is positive, its mentally hard to engage.

No photo, my girl has not been in a photographic mood.

Update Marijuana Trials

Abbey has had no status seizure episodes since she started. This is a huge improvements on the 2 or 3 she would experience a fortnight.

The seizures continue to change in presentation which keeps us on our toes. She still has up to 10 a day lasting up to 5 minutes.

The marijuana oil has been interacting with the drug clobazam and making her slept up to 20 hours a day. We had reduced the sleepiness, but she is a bit wobbly on her feet.

There are more Doctor appointments, blood tests and hospital visits. Lots of recording and watching Abbey closely.

So far it has been more positive than irritating, but the trial and care of Abbey does chew into my time.

She still has a way to go as we need to address the wobbles ensuring seizure activity does not get worse.

Update Marijuana Trials

Abbey has not been very photographic this week. So the boys have stepped in.

With our third increase in the dose of oil we are starting to see changes.

There is a lessening of seizures. We are seeing less myoclonic jerks and vacant seizures. The big seizures are still loud and strong, but less.

It’s good news but we are still cautiously optimistic. We have been down the path twice before, with results going backwards for Abbey.

There are still 2 dose increases to go.

Abbey is showing an increase in drowsiness, this is clear now. A phone call to neurology department to discuss next steps.

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.