Bye Bye Hyps?

Hypsarrhythmia – the bane of our life for most of Jude’s life. A chaotic and disorganised brain wave pattern. Its treatment has been aggressive and painful for Jude and everyone around him. Perhaps we have seen the last of it?

As Rachel states, the recent EEG is much improved but still shows myoclonus and generalised seizures. We were warned early on that Jude was likely to have some form of epileptic activity, probably for the rest of his life so the results were no suprise.

Of course its something new to learn about, to deal with. At the moment it looks quite benign (but then so did the IS) but at least it allows him some respite in between – an opportunity to live and enjoy himself (and for us to enjoy him).

New drug – Epilim/Sodium Valproate and it WOULD BE REALLY, REALLY NICE if this would work, 100% without any side effects. Now that would be fair after the last few months.

A Different Kind of Bad

We’ve been to the hospital today…. for Jude’s results.  The news we received was expected.  Jude’s fits are back, but in a different form.  They are myoclonic  (probably spelt wrong) basically there is no hypsarythmia showing, just this new form. 

We knew things were different as he was clearly having some type of fit but he is never bothered by them, he spends most of his time smiling and cooing and making new sounds.  The latest one is “a-gu-b” which he seems to like saying.  He also like to lie on his front and somehow moves himself round 360 degrees.

I don’t know as much about all the different types of epelepsy as Ian does so I asked him if this was better,  he said “it’s a different kind of bad”. Mmmm time will tell, how Jude copes with this. 

His new medication is cherry flavour…. He hates it (with a passion).  He will have another eeg in 8 weeks.  This is the time that the new drug should take to work.  Watch this space……………..

10,000 Visits

Jude’s blog started off as a way in which I could let people know what was going on without having to talk to everyone – a defence mechanism. In a short time, blogging introduced me to many others going through similar things which was sometimes great, sometimes scary but most times just what we needed.

And now, some 7 months later it’s gone past 10,000 visits. To celebrate and say thanks a band and a song that says it all.

These are days you’ll remember.
Never before and never since, I promise, will the whole world be warm as this.
And as you feel it, you’ll know it’s true that you are blessed and lucky.
It’s true that you are touched by something that will grow and bloom in you.

These are days you’ll remember.
When may is rushing over you with desire to be part of the miracles you see in every hour.
You’ll know it’s true that you are blessed and lucky.
It’s true that you are touched by something that will grow and bloom in you.

These are days.

These are the days you might fill with laughter until you break.
These days you might feel a shaft of light make its way across your face.
And when you do you’ll know how it was meant to be.
See the signs and know their meaning.
It’s true, you’ll know how it was meant to be.

Hear the signs and know they’re speaking to you, to you.

In Support of Jude

Today we had our first review meeting for Jude when various members of the therapy team all get together and compare notes. It got me thinking about what we have at our disposal if only we can get a good run at things over the next few months.

Family and friends. Nothing more important and in that respect we are very well blessed. On top of that though are the therapy services which, on reflection, are pretty impressive too.

There is quite a lot ‘in play’ at the moment and sometimes it makes me feel just a little guilty – those sometimes tend to be when Jude is smiling and could just be any other baby, in any other family. But, I want it all – I’d rather be in a position to say we don’t need something than have to fight to get that something.

At the meeting today was Jude’s physio, occupational therapist, speech and language therapist, someone from the education team and our respite carer. Unable to attend today was the dietician and the consultant.

Jude is seen by most of these people on a weekly basis, he also gets weekly sessions at a hydrotherapy and has access to the local sensory room. Respite is offered once a week with the opportunity to increase this in future. We get an additional income via disability living allowance which helps cover the extra we spend and we will also get financial help from various sources for a high chair, car seat and pushchair all of which are really expensive as a result of Jude’s specific needs. The real benefits of some of these services may not be realised for some time but they are in place now, ready and waiting.

In December we will spend a couple of days as a family at Brainwave a specialist centre for children with brain injury, genetic conditions and developmental delay. This initial assessment is then followed by regular follow up stays so that Jude can be re-assessed.

So while we are all happy that Jude has turned a corner again, it is because of all he has at his disposal that it is so important that he stays on track so that we can really start to explore his potential.

It’s kinda funny

A few days back it was all doom and gloom in our house. There was definitely new seizure activity (although that seems to have lessened in the last couple of days), Jude had another chest infection, he wasn’t keeping anything down and he’s lost weight over the past month. Doom, gloom and pessimism.

Out of nowhere Jude returns. Not just in a subtle “only a parent would notice” way – but a full on, in yer face at 3am in the morning type of way. If he knew what his arms were for he’d be crawling, he’ll sit quite happily in a little seat we got him, he looks at you (intently) smiles and suddenly the pessimism has lifted.

Been here before. Need to stay here for a while. Enjoy it.

Wow!

My Jude, he NEVER ceases to amaze me.  He is, in my mind incredible.  He’s been a bit off over the weekend, with a chest infection (yes another one, I know) he was quite ill on Sunday, coughing, spluttering being ill and in between all that, smiling and chatting.

He seems to have discovered so many things over the last few days.  Although we don’t know the EEG results I can’t help feeling more positive and I now have a little boy, who’s nearly 1. He smiles, interacts, watches you chats away in his own little way.  Plays on the floor, and rolls over from his front to his back.  He pushes himself up with his arms and looks around,  Tonight he was pushing away with his legs, and I swear that if he just had the strength in his arms, he’s be able to try to crawl.

Tonight I am smiling through the tears of happiness, at my Jude. I love him so.

One step forward, a marathon backwards

We haven’t had the results of the EEG yet but to be honest it is only going to confirm what we already know – it isn’t good news. Over the past few days Jude has been doing something new, and not in a good way.

They look different from the old spasms – more like myoclonic jerks (like the ‘normal’ ones you get when you’re just about to fall asleep). They don’t seem to bother him too much, unfortunately I’m not feeling so laid back about it.

Oh, he has another chest infection too – that’s his sixth in 10 months.

And he is losing weight.

They’re going to want to put a G-Tube in, it feels like a losing battle on that score.

Probably more drugs too.

And he still hates his car seat so we can’t travel too far.

Why?