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.

The Flying Turd

Digesting all of the information we are receiving, is onerous, to be honest. There is an overwhelming theme though.

Enjoy the moment.

There is nothing more I can do for Abbey, apart from making her comfortable and allowing for her to experience happiness.

For the family, it’s taking all moments and slowing it down. There is nothing more I can do to make our family life easier.

And as Abbeys carer, it’s about giving myself permission to find the moments. To start with finding a little joy from moments not centred on Abbey, family or my small business.

Today I took up watercolour painting again. Let me present ‘The Flying Turd’. My first attempt after 6 years.

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.

24hr EEGs

Good morning.
Miss Abbey kept has kept us up since 2am waiting for a big seizure to evolve and present. Every 20 to 30 minutes she would be up mouthing and chatting. 415am a big jerk interrupted our sleep. 5am the big seizure arrived. Finally she can sleep peacefully with her new ‘teddy’, the hard and metal EEG machine.
For Mum it’s back to work as the hospital teams start arriving around 6am for more tests and Chats.
Time for a hot drink and a shower, and the countdown to Home.

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.