Ava the Brave

 Ava the Brave is having another brain surgery today. One of the defining characteristics of intractable epilepsy is the frustratingly short duration of efficacy in treatments. There is a honeymoon period of great success, but seizures have an annoying way of tenaciously finding new neuro pathways through which to wreak havoc. Ava’s seizures have been dramatically increasing over the past months, and she’s back at Mott today as her neurosurgery team tries to give her a better chance at seizure reduction. She’s been down a similar road before with her last brain surgery, but this time they’re moving in a slightly different direction with an RNS implant. Similar to her VNS device, implanted in her chest, which has helped stop some of Ava’s smaller seizures, the RNS will also try to intercept and stop seizures. But, the RNS device is implanted on the brain with leads connecting directly to the suspected foci. The device will grow smarter with time and zap the seizures where they start, as well as function as a continuous EEG. Today’s surgery implants 18-20 depth electrodes to determine those foci, hopefully paving the way for the RNS implant in about a month. It’s a rather long surgery, as the neurosurgery team uses ROSA in a robot-assisted procedure, to implant the electrodes. Our robo-girl continues to acquire more bionic parts! We marvel at both the technology and the extraordinary humans at Mott who care for our most precious human.

So, Ava’s going to be rocking the bandanas for awhile and we continue to hope that the endless sacrifices will bring her better health and happiness. When Ava is out of surgery and ICU, she will move to a regular room for 1-3 weeks. I know she would love reading your messages of support here. Thank you all for the prayers and well wishes! 

Ava, aka ‘17 Electrodes’, is doing better today. After a rough evening, pain and nausea are a bit better today and we hope to move out of the PICU and to a regular room soon. The plan is to hook up the surface electrodes along with the 17 depth electrodes already in place and waiting, and then wean the seizure meds. They need to lower the seizure threshold to capture as many seizures as possible, to determine the foci. It’s a heck of a thing to hope for seizures, and the emotional weight of that is enormous. Ava continues to be one scrappy, tough young lady. Thank you for the many kind posts, prayers, and words of encouragement. I’ll share all of them with Ava as she gains strength.

I’m way behind in posting updates and in thanking everyone for the wonderful messages. They’re really cheering up our very patient patient here. “17 Electrodes” is still hanging tough, and we continue to wait for a good assortment of her typical seizures, reducing meds again and introducing sleep deprivation tonight. 

We received the most amazing care package from my sister Lulu. My Mom (Ava’s dear Munga) passed this May, and this beautiful bear was lovingly made from one of my Mom’s favorite shirts. Ava immediately picked up her Munga Bear and pressed it to her forehead, looking deeply into her eyes, even before she knew its significance and where it came from. Pressing her forehead to Ava’s was something Mom often did, and we have a framed photo of the two of them doing exactly this! I know without a doubt that this was a Munga/Ava Moment today, and Ava and I both shared some happy tears. What a beautiful way for us to continue to feel close to her!

Hurray! It’s Homecoming Day! It’s been a rough couple of days, with some scary moments and more pain than expected; but, Ava had her electrodes removed yesterday and she’s coming home today. Now we wait to see how the Mott neurology and neurosurgery wonder team assembles the massive constellation of compiled data, how it all lines up, and what the next surgical steps may be.

STUDY: Dogs detect epileptic seizures by their odor

It's Science Says Sunday!

We know dogs can detect certain diseases — like some cancers — by their scent. This study tested whether dogs could detect epileptic seizures by their odor. Because there are many types of seizure, which may mean many different associated scents, it was unclear whether dogs would be able to detect them reliably.

All dogs in the study were clearly able to discriminate a general seizure odor. In fact, the "sensitivity and specificity obtained were amongst the highest shown up to now for discrimination of diseases" which suggests epileptic seizure alert dogs can be trained on scent.

https://www.nature.com/articles/s41598-019-40721-4?fbclid=IwAR1gY1MRzSK4qHU2YzqcwMj1BoknO2hgiZZR_x4nWUS29B4iyo36shyCrM4 

Basic Foundation

Parkinson's Study

Neurological diseases affect 584,000 in the UK.

We are determined to improve early diagnosis of progressive debilitating disease. 

Neurological diseases affect over 1 billion people worldwide. Our work currently focuses on Parkinson’s disease, which affects one in every 500 people in the UK. People with this complex progressive neurological condition can be left struggling to move, speak, swallow and even breathe.

There is currently no definitive test for Parkinson’s. Diagnosis is usually made in response to the individual exhibiting motor symptoms, such as tremor and rigidity and non-motor symptoms such as feeling tired and having sleep problems. Sadly, there is no cure and Parkinson’s symptoms typically only start when more than half of the relevant nerve cells in the brain have already been lost, which the latest research suggests is up to 20 years after the disease first occurs. 

Being able to diagnose the condition earlier would lead to treatments starting sooner and greatly increase the chances of developing those which slow progression of the disease, or even of finding a cure.

Our work

Medical Detection Dogs, in collaboration with Manchester University and Edinburgh University, has
 been working on a ground-breaking proof of principle study which has determined that dogs can detect 
Parkinson’s disease, possibly many years before symptoms start to show.

Our dogs have tested several hundred samples, and were trained to respond with simple ‘yes’ or ‘no’ 
indications. These results were very positive and will enable our collaborators in the next stage of this 
research to hone in on the specific chemical linked to Parkinson’s.

The future

In the next stage of the study our collaborators will use mass spectrometers to split samples into their 
component molecules to hone in on the specific chemical linked to Parkinson’s. We will then present 
the dogs with each component part so they can identify the key chemical indicator for Parkinson’s.

Our goal is to develop a definitive way to diagnose Parkinson’s disease. This will contribute to 
developing earlier, more effective treatment, and will open the door to further research into the cause
 and progression of this debilitating disease.