A different kind of journey

I’m going a little off topic for this blog post but I know lots of you have been curious and I’ve had so many messages of support and questions that I wanted to share a small part of our journey.

A lot of you already know that the tiny human of the house has epilepsy, she was diagnosed at around age 2 and we’ve spent the last 3 years between hospitals and consultants trying to get to a point where she is seizure free. Sadly we are not there yet which leads us to the latest part of our journey; at the weekend just gone we travelled back up to the hospital and had an EEG machine fitted onto Miss P’s head. All the little sensors were glued on securely and she has had to wear it day and night the whole weekend; with us back up on Monday for a slow and lengthy removal process.

The purpose of this EEG is to see whether Miss P is having seizures in her sleep that are waking her up. We had a special diary to fill in each time she woke up (I’m not sure how much sense it made in our sleep deprived state of the early hours!) and a button to press on the recorder to log the specific time she awoke.

All of this plus the continued brain wave recordings have been passed to the special doctor at the hospital who will decode and evaluate the results. In a few weeks time we should then know what the results show and if the Epilepsy is having any effect at night.

In addition to the above the tiny human will also be starting a diet called the Ketogenic diet. It’s extremely low carb and forces your body to get energy from fat reserves instead of from the energy created by eating carbs (fear not she has a lot of high fat foods to keep those reserves up as we are not trying to get her to loose weight).

Your brain processes energy from ketones differently and it is this change in process that us and the doctors are hoping will help reduce her seizure activity.

I may have said a very sad goodbye to the wonders that are bread and pasta but we are going to have as much fun as a person can spiralising all sorts of vegetables instead πŸ˜‰

So there we have it, a small update on what’s been going on. I hope I’ve not completely bored you all and I promise the usually yarny goodness will return soon.