Warrior of the Week

This week for #Warrioroftheweek we have the delightful Flo ( We just love the Beer goggles Florence ! )

Florence will be 4 in Nov, born premature at 32 weeks she thrived in neonatal & was home 2 weeks later.

Slow to hit milestones I assumed it was because of her being premature but had no other concerns.

However at 16 months old I recall a conversation with another school mum & I said I can’t put my finger on what’s the matter but Flo is sleeping all the time & it doesn’t seem right, less than two weeks later whilst my husband was away I noticed an unusual shrug, very subtle eye deviation followed by an absence, it then happened in front of her nana who agreed it didn’t look right. These episodes increased quickly in clusters.

Straight away I just knew it was a seizure I was convinced, Google to the rescue I started to put in her symptoms & watch videos, I was certain they were absences, this next day was a bank holiday so I made a gp apt for the Tuesday. The gp agreed they look suspicious & said she would refer me to our paediatric rapid referral at our local hospital & it could take a couple of weeks.

The next day the clusters were happening all the time so I decided to take her to our local a&e, fast tracked through to the kids unit an epilepsy specialist (our now consultant) was on the ward, armed with lots of footage he was quick to see us & said he thought they were myoclonic seizures but couldn’t rule out another epilepsy but being 16 months old that Flo was out of the typical age bracket for it.

We were admitted then sent over to a fantastic children’s hospital in Liverpool Alder Hey, Flo had an EEG & we were discharged, we hadn’t got far & her Consultant rang to say the EEG was chaotic with hypsarrthmia & to go the hospital the next day & talk about medication & diagnosis.

Florence started on Prednisolone that day, with the intention of adding in vigabatrin if needed. Armed with appointments & a passport access to the children’s unit we were totally unaware of the horrendous months ahead.

The steroids weren’t controlling the spasms & then Florence ended up with chicken pox aware of the danger being immunosuppressed she was admitted again & given IV acyclovir, our consultant also decided to add in the Vigabatrin.

We were discharged after the last acyclovir was given & she seemed ok it was explained that the steroids can dampen the virus which would explain her only having a few spots.

We were living with my mother in law & waiting for our new house to be built luckily close to the hospital as it became very apparent she wasn’t right, randomly tapping thin air with her right hand/finger & unable to stand/walk I rushed her back to hospital, her pupils were hugely dilated & up to the far right.

The hospital couldn’t do MRIs on children so it was decided to do a CT scan, the Dr on duty that night came in to explain they had sent the CT to alder hey & the neuro surgeons had agreed Florence had a bleed on her brain & that they wanted her over in Liverpool to takeover her care.

We were transferred the next morning first thing, the next few days were like an eternity Florence went into non convulsive status & reverted back to being like a newborn, she had a lumbar puncture which showed the chicken pox had travelled in her spinal fluid, the MRI showed a focal cortical dysplasia in her left frontal lobe & possible slight bleed round the rim of it, the neurologists decided to wean the preds & vigabatrin & add in keppra & she responded positively but slowly.

From there Flo went on to have Focal seizures, myoclonics & absences adding in clobazam helped although she didn’t remain on it for long due to an adverse reaction.

Fast forward to now Florence is doing great physically, she’s still delayed in respect to her speech & understanding and has quite a few quirky traits. She still suffers with absences & complex partials & we are under a consultant at Manchester children’s to see if epilepsy surgery might be an option in the future, if needed.

We’ve been through some terrible times & im not gonna lie I worried for her future given the prognosis but she’s doing great & with supportive family & friends & our support group we’ve got through those times so always have HOPE!!!

The picture was taken during her first VEEG over in Manchester Dec 2015 in her beer goggles & its one of my faves 👌🏻

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