Red noses and seizures

The only way I will post a pic of my girl is in black & white. Imagine a bright red nose from another cold virus that has taken up residence.

2 days ago my sweet cherub had 6 big seizures in a 5 hour period. She recovered well but I could not find any reason for it.

Yesterday she was just not quite right.

Today she is uncomfortable with the runny nose and gagging from the dribbles. At least now it’s a virus, and nothing more sinister. And an explanation for the run of seizures. (For those keeping track; a bit sick means more seizures, a lot sick means far fewer)

We are both getting tired from the long days.

Seizures and illness

Seizures are back!

After 6 days of no big seizures due to illness, we know she is on the mend when the big seizures reappear. We think she had the flu along with post anaesthetic complications.

Now the smiles and giggles appear, making for happier days.

Why this occurs? No one can tell us. It’s a great indicator though on her well being.

Go Abbey!

Decisions

For any special needs parent, there are times we must make the decision to follow a course of action that is the lesser of two situations that are not ideal, but one has to be slightly better. We hang on to the hope that it has to be slightly better. It just has to be.

Abbey started a new medication 6 weeks ago as the big seizures were very strong leading to aspiration. Over this time we have seen a gradual increase in seizure number and length of a seizure. But the intensity of the big seizure is slightly less and a reduction in seizures that cause aspiration.

Abbey is tired from the increase in seizures. It is rare any one in the family gets a full nights sleep due to seizure activity.

Tonight we make the decision to come off the new medication. Our goal is always quality of life for our girl. We miss her giggles, her cuddles and her constant nattering.

We hope we are making the right decision. We will not know the consequences in a couple of weeks.

We watch. We wait. We cuddle.

24 hours of CDKL5

24 Hours with CDKL5 Seizures

Abbey has a very rare gene mutation called CDKL5. Like all rare genetic diseases or disorders, it can be hard to explain, to relate or even to share. So let me share what the last 24 odd hours looked like for Abbey, and as a consequence her family.

630am an extremely rare sleep in. Abbey is chatty and giggly.
7am getting ready for the day. One vacant seizure.
8am her new best friend, Alison, arrives and I’m now not needed or considered.
8 to 12pm Alison notes 2 vacant seizures, lasting 5 to 7 minutes plus 2 jerks.
12 to 2pm is lunch and preparing for the next day. Abbey is a bit tired and sleeps, some subtle seizure activity while sleeping.
2 to 6pm is family time watching a movie and discussing our solar system. Abbey is still very tired and a little spaced out. We are watching her closely.
Bedtime, she is still not quite right.
10pm large seizure with breathing difficulties.
2am large seizure with breathing difficulties
4am she is awake, ready for the day. We are not.
5 am we get up.
530am we get Abbey up, followed by 1 vacant seizure and a jerk.
8 to 10am Abbey is Home with me and note 3 vacant seizures and 3 very big jerks. Brain and ears are working overtime listening for the next subtle movement or sound that indicates a seizure, while I work and do household chores.
10am I give up trying to get anything done and we watch High School Musical 3 and knit while I wait for reinforcements.
10am to 6pm reinforcements are here, but I’m still tuned in waiting.
6pm bed for my girl, and down time for me before another unpredictable night.

Total seizure count can be up to 20 a day at the moment. Some days it can be one seizure that lasts 6 hours. This is one part of CDKL5.

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.

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 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.