News & Events

Lolo

Last Reviewed 24/10/2017

By swan uk members, Steff and Adrian Weller

Logan (we all call him Lolo) was born a normal healthy baby. By the time he was thirteen months old he was walking, talking, eating, seeing, crawling. He was doing all the normal stuff. He had Nystagmus (constant uncontrolled movement of the eyes) but was otherwise fit and well.

On August bank holiday 2010 Lolo had his MMR jab and within six days of having it he had a fit; he was foaming at the mouth as if he was choking. We rushed him to A&E. He then had a twitch and he was rushed to resus where he had another twitch for about ten to twenty minutes. We stayed in hospital for a week and got told it was a Febrial Convulsion (fits that can happen when a child has a fever). After all tests were clear we were discharged with medication, Buccal Midazolam. Lolo was weak down one side but it got better.

Nine months went by an Lolo was back to normal and then May Bank holiday 2011 arrived. Lolo had another seizure but the medication didn't work and we were hitting 45 minutes for a seizure. An ambulance arrived and they finally got it under control at 52 minutes. We were rushed to A&E where Lolo then went into another seizure and my local hospital couldn't control it so we were taken to London where they had to intubate Lolo and put him on a Midazalam drip. After being rushed to Evelina London Children’s Hospital, he was diagnosed as epileptic. After lots of medication and tests they told me that Lolo’s epilepsy is a symptom of his illness.

After getting his epilepsy under control (or so they thought) we had more tests and went home. The next bank holiday in May came and yet again Lolo had long seizures and he was intubated and rushed back to London. We were then in and out for a little while but Lolo then deteriorated quite fast. He lost his eyesight and muscle tone, speech and ability to eat. We were told that he has an undiagnosed progressive neuro-metabolic condition with refractory epilepsy and episodes of partial status epilepticus, visual impairment, evolving movement disorder and disordered swallowing.

We were told that if Lolo was still here at Christmas (2011) we should make it a good one.

Lolo had a PEG fitted in August 2011 so that he could be fed, but it didn't really work very well. That Christmas came and went and we're now on the fourth Christmas and he's still here. He now has a G-Jet button which has to be surgically changed every six months and he has put on weight. He also has a Portacaph and has just had hip surgery. As the medication for his epilepsy wasn’t working we tried the ketogenic diet last year. This was unsuccessful so we are now waiting for cannabis oil to be approved here in the UK for Lolo to try to see if this helps, otherwise our last option is VNS treatment to help his epilepsy by treating his seizures.

Lolo is now dependant on us, his big bro, nanny and granddad, bumble bee (his wheelchair) and stitch, his twin bear that's just like him. In July he will be nine years old.

When Lolo first fell ill I was working as a full-time landscaper but by July 2011 I had to give my notice in as our eldest was not coping with his mum and brother not being at home and being taken to his auntie’s while I worked. Once my wife and youngest came home things were a lot harder; I still needed to be at home with her to help her out too so my new job as such was as a full time carer with her.

Giving up work to become my son’s carer has been the hardest thing I’ve done but it’s what was needed and it’s also been the best thing I’ve done.

I love being at home for my boys and supporting my wife.

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