Daisy has epilepsy and epilepsy has us in it's grips. It's turned our world upside down and when we thought things really could not become more complicated, they did.
This is the house guest you loathe, some of our others, like TPN and Catheters and Stomas, we've grown to accept and they have become part of our lives, fitting in to our routine so that we were able to have some sort of an existence. But epilepsy is anti-social, seizures come without warning, they disrupt plans, throw you off guard and turn you into a gibbering wreck. When Daisy had her first few seizures a good friend wrote to me and said that she could cope with all the issues her daughter faced but the epilepsy was the thing that had tipped her over the edge.
And I can believe it. Have you ever seen a full on, tonic clonic/grand mal seizure? These are the main ones Daisy has (along with spasms and absences and partial seizures - thanks epilepsy, bring a few friends along for the ride).
In this phase she needs someone there all the time to reassure and comfort her and deal with the fall out from the seizure - her stoma bag can rip off, she can need suctioning still as she vomits up secretions and sometimes in her confusion she disconnects her TPN from her hickman line putting herself at huge risk of life threatening sepsis.
So this unwelcome visitor has taken away a huge part of Daisy's life as she lurches from one seizure to another, it has taken us away from the other children as we stay glued to her side to make sure she is safe, it has carved up our family so that we constantly listen out for that first cry and the call from the person with her. It is a brooding presence when we leave the house, determined that life should go on but secretly dreading the moment she has a seizure in a public place.
|30 minutes after this picture was taken Daisy had a seizure and spent 2 hours recovering|
And we know now that this house guest is here for the long term. We have learned with epilepsy that it is a long, long road. That the aim is to be seizure free by finding the right combination of drugs but that this can take a long time and may never be possible. And of course because Daisy has so many other complications our options for treatment are decreased which means the odds of actually being seizure free are less.
We are nearly on the maximum dose of the first line anti-seizure medication and if anything the seizures are worse. So twice a day, having already administered Daisy's normal IV drugs and set up her drip we then set up her anti-seizure drug (which can take a good 10 minutes to draw up on a good day) and wait for it to infuse. Not all the other drugs are available in an IV form and we need to ensure optimum absorption to the IV route is essential, this means that our choice of treatments is more limited than other people with epilepsy. This is true also of the ketogenic diet, the next step for children with difficult to control epilepsy. A child who has hypoglycaemia issues and is intravenously fed cannot to my knowledge follow the ketogenic diet. A longer way off there are surgical options as the neurologists start to identify the parts of the brain the seizures are originating in.
|still managing to rock the eeg netty hat|
Once again, completely off the scale for Costello Syndrome, where epilepsy like this has not been documented. And again we ask, Why us? Is the welcome in our home so great that all these unwanted house guests feel the need to keep turning up?
We are working with geneticists to do some more testing to see if there is something more going on. Mainly to help guide care and help understand where this has come from. Maybe we will never know - maybe Daisy will always be half diagnosed - Costello Syndrome plus???
In the meantime we live in hope that we can get these seizures under control and the door can be firmly shut to any more unwelcome visitors - we're full to capacity at the moment .