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Through the Rare Project we introduce you to the people behind their rare conditions.

Eddie

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Eddie’s a boy who is seriously held back by his condition. I suppose in a way, I don’t entirely know who he is because of the fact he’s not developing and that’s pretty much because of the seizures.

“Eddie has Infantile Spasms.  With Infantile Spasms, the actual seizures are not the way people imagine, he doesn’t lose consciousness and he doesn’t shake all over. They can look very mild but they come in clusters, so some clusters might be up to 80, sometimes it’s only 10.  They are sort of small movements and he jerks, his legs will come up and his eyes will roll.

The clusters themselves are a reflection of what’s happening underneath and for infantile spasms there are three things - one of them is something called Hypsarrhythmia and that’s where the brainwaves are always chaotic, so when you look at an EEG of a healthy brain, you get the nice wave, but Eddie’s brainwaves are always chaotic so neurologically, although the seizures look quite mild and people will often say “oh, I was expecting more than that”, what’s actually happening is that his brain is just constantly seizing.  This is why he is so slow to develop because it’s like you’re constantly rebooting a computer.  It’s like everything gets wiped over and over, and so at nearly 3, he can’t sit, he can’t walk, he can’t talk, he’s incredibly delayed and it’s because his brain is just firing away. That’s what makes it so catastrophic really.

When you have a child with special needs you pretty rapidly become aware that when someone asks you about them, you should never start with their disabilities but there’s no denying it, that’s the focus of your attention.  He’s a really happy boy, he’s very sociable and loves hanging out with people.  He’s got a great smile and he loves being busy.  He’s just recently started going to nursery and absolutely thrives off that.  However, Eddie’s a boy who is seriously held back by his condition.  I suppose in a way, I don’t entirely know who he is because of the fact that he’s not developing and that’s pretty much because of the seizures.  He’s got brain damage effectively which is the cause of the seizures.   So, the focus of our attention presently is doing what you know you can do to stop the seizures. 

Eddie was initially given the frontline treatment for Infantile Spasms and one of the steroids from the NICE guidelines. Those are the main treatments and if they don’t work then it’s really a case of working through some of the more traditional epilepsy medicines that aren’t specifically for Infantile Spasms. And as you go down the list, the chance of them working gets smaller.
We’ve tried quite a few epilepsy medicines, there are still a couple we could try but the chances of them working are really slim now because he’s tried so many of them.  However, none of them are for infantile spasms.  We haven’t ruled out others but you also have to be conscious of how many you’re giving and how they interact with other.

The spasms are so catastrophic, the next option is to look at trying medical marijuana.  We started Eddie on CBD over a year ago and that has been what’s worked best for him.  CBD is illegal in this country, but you can buy a variation of it in Holland & Barrett.  Because it’s not prescriptible you can’t get any advice and that was an incredibly hard decision to make.  We trust the medical team around Eddie.  He’s got some brilliant people involved in his care but they can’t help us with this at this moment in time.   We currently buy a product from America, from a state where it is legal, so it’s being made properly and we’ve been able to get some advice from both the company that make it and other parents but not from our own medical team.  With the CBD we had a brilliant phase where we had 3 months with no seizures and it’s still at the best it’s been with only a couple in 24 hours, so at the moment we have changed to a different kind of CBD because they’re all made from different plants so they work slightly differently.  We both see so much potential for a happy little boy, he’s so loving but he just can’t develop.
In America it has absolutely been shown to work for other children and there have been so high profile cases in the media recently and we have been doing as much as we can do too to highlight the plight of our children.

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Worldwide, it’s very well known that both CBD and medical marijuana can really help with all kinds of epilepsies, and there are other countries where it is legal.  They’ve found the medical evidence that it works, they’ve done the testing and they’ve done the trials.   As parents it is scary and it’s not something that I thought we would ever associate ourselves with, it’s not something I’ve ever thought about before.

When he had 3 months of seizure freedom when we started the CBD, he learnt to roll in that time, he developed.  It wasn’t leaps and bounds but he developed.  He developed more in those 3 months than he’d developed over the last year and that was an incredible thing and that’s what we want.  We just want him to have that chance."

 

If you wish to discuss this project or reproduce any images or story, please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)

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