Learning a new vocabulary

Over the years we have added to and expanded our vocabulary of medical and special needs terms - in the early days it was the language of NICU (neonatal intensive care unit) with NG feeding, cpap, jaundice and corrected age creeping into our conversations, then it was genetics speak, then Costello Syndrome speak and before long we found ourselves holding our own with Daisy's doctors as we spoke about gut inflammation, fluid balances, neuropathies and myopathies, stomas, catheters and TPN.  You know you're an intestinal/bladder failure parent when you know all the reference ranges for your child's main blood tests, or you start photographing the different shades of bile that they produce from their free drainage, or when you get excited because their fluid balance chart adds up!

And suddenly this alien language becomes part of your everyday language and you find it becomes the norm.  Until that is, you are forced to learn a new language - we have had some experience of that when we had Theo's Asperger diagnosis and had to go down the road of obtaining a statement of Special Educational Needs for him.  But the language of Aspergers and SEN is closely related to words we had already learnt in Daisy world so it was not too difficult to pick up and understand.

As of 20 days ago we were parachuted into a completely unknown territory where the language, and customs are completely alien to us and where our learning curve has been the steepest ever.  On Saturday 1st May, after returning home from a lovely day out with friends, Daisy had her first ever seizure.

We now know it was a tonic-clonic seizure (formerly known as a grand mal fit), but for us it was the most frightening thing that has ever happened (and blog readers know Daisy frequently puts us through the mill) - seeing Daisy pottering around one minute, then screaming and dropping before twitching uncontrollably, going blue and frothing at the mouth was truly awful.    We called 999 and we went to our lovely local hospital, St Helier.

Hoping it was a one off, strange, Daisy-event we went home but were not too surprised when two days later she had another seizure.  And they have escalated from there, she has now had 19 seizures including cluster events where she was barely recovering from one seizure before she went into the next one.

And so the question we keep asking is why?  Why when seizures are not commonplace in Costello Syndrome has Daisy suddenly developed them?  Why have they started now and not when she was younger?

Everyone is shocked by this sudden change of events and as concerned as we are as to why.  Our biggest fear as always is the increased risk of tumours that come with Costello Syndrome, followed by concerns about an acquired problem which may need neurosurgery and lastly what if it is idiopathic epilepsy - epilepsy of unknown origin?  Why did our little girl have to develop it and add another layer of complexity to her already complex life.  It seems like she is being attacked from all angles - TPN, the intravenous nutrition she requires to survive, seems such a simple part of our lives now, we spent two weeks being trained in Great Ormond Street to administer it but we could do it with our eyes closed (almost), we administer daily medications intravenously and sometimes add in IV infusions - again this has just been assimilated into our routine.  The same goes for her stoma - after a while looking after and managing it just became second nature and even when her mitrofanoff stoma was added in (the one we use to catheterise her bladder via her tummy) we found a way to manage it that worked for her.  

We had become so confident that we could juggle Daisy's complex medical needs - her intravenous nutrition, IV meds, enteral meds, enteral feeds, catheters, stomas plus her physical disabilities and her multi-sensory needs that we had decided to take her to the States to meet with the doctors who are researching and specialising in her condition at the International Costello Syndrome Conference.

But now all those plans are out of the window.  Now we are learning how to administer new iv infusions of anti-seizure meds while waiting for the call for an urgent MRI of Daisy's brain and spine. Of course urgent in Daisy's world does not mean it will be done tomorrow - Daisy has a floppy larynx and narrow airway that has become more symptomatic this year which means that anaesthetics are more risky and more complicated, she has so many issues and complications that a simple MRI needs to be planned and thought through and that takes time.  And now we are dealing with a new team, unlike all of Daisy's other teams, the neurology team don't know Daisy or ourselves well and it's taken quite a lot of communication from ourselves and our local team to demonstrate how Daisy can surprise us all and convince them that sudden onset of major seizures with a child with a high malignancy risk, plus other potentially contributory issues should be a priority for action.  Daisy took matters into her own hands when she proved the Neurology consultant wrong on her EEG results - he was convinced the results would show generalised epilepsy but instead they showed a focus in one part of her brain, I guess just as our learning curve is steep, his will be too as his assumptions about what is happening are constantly tested by Daisy.

So now our already complicated lives are even more complicated.  New equipment has been added - a suction machine, some oxygen.  We carry around "rescue medication" for when seizures are long lasting, we have had to accept that driving to the hospital is no longer possible after she had a major seizure in the car park and ended up in resus.  We have had to adjust to a whole new world and so have our poor, long suffering children who will need to be constantly on the watch out for seizures and falls and have had to learn to know what to do.

We have had to claw back some moments of independence for the time being - like allowing the older children to take Daisy in her wheelchair to the local sweet shop or even leaving her to play on her own while I cooked a meal for the family.  Now we have to watch her like a hawk as there is no warning, her walking has deteriorated and she can literally be playing one minute then in full seizure the next.  And until we have some idea from her MRI this will be how we live until we know why she has developed seizures and then plan how we can better control and predict them.

So we are in an alien land now, learning yet another new language, getting to know another group of people.  I have no doubt that eventually we will assimilate it all into our lives and we will find some sort of equilibrium, but in the meantime stress levels run high and life, already pretty challenging, has gone up a gear yet again.


  1. I don't know how life can be so cruel to you and your wonderful brave little Daisy. My heart goes out to you all.

  2. Thanks for such a lucid and honest account of all you are juggling. Wow. Hope the plans for US can be reinstated too. It is true that no sooner do you feel you can up to breath, than bang!

  3. Looking for Blue Sky6:05 pm

    Thinking of you - I am so thankful that my special girl has escaped seizures so far x