Potted history!

November 2013 : Reed was born 8lb 8ozs 0124 hrs. A normal water birth following a normal pregnancy

January 2014 : Back to work as a Childminder, working full time and from home. (Huge strain on family/husband)

May 2014 : Things got tough so booked a holiday for September (Our honeymoon of sorts!)

Early July 2014 : Ryan and I separated (things just got more tough!)

(First week) August 2014 : Spasms started

13th August  : First appointment with Dr (no video) diagnosed Reflux (oh how I wish it was reflux)

14th August : Saw my regular Doctor with video footage (and three minded children!) visiting registrar came to have a look, referral made and suggestion of “benign something something of infancy”. Again told nothing to worry about!

18th August : Chance encounter with a Dr on day out.

19th August : (happy birthday mummy!)  EEG, CT scan, video analysis and poked and prodded by lots of Drs and trainees. Diagnosis of Infantile spasms. Acth started

September 2014: Should we go or should we stay, make or break holiday with immune suppressed son on Prednisolone wean. Steroids turned reedy into a chunk! 

October 2014 : Break holiday (not make!) return of spasms start Vigabatrin

November 2014 : Seizure free (I think)

December 2014: Return of seizures, very subtle, hard to notice,  start Epilim and wean Vigabatrin. Family nightmares, fighting, anger and bitterness.

January 2015 : EEG: identified more seizures than we though. Return to ACTH to “buy time”. Referred to Bristol, appt for the “Epilepsy Surgery Pragramme”. A living nightmare of ACTH, 2 hours sleep, consultants worried about mental health, call doctor, refer for counselling, start counselling. Husband and I angry!

Feb 2015 : Seizures never stopped just get worse, start topirimate. Seizures reduce/ stop. Book in for a week “work up to surgery”. Total despair, put house on market, start divorce, make arrangements to move north to mum and dad. Stop counselling as chicken pox at nursery, no childcare. Give up childminding. Granny died.

March 2015 : Seizure freedom, house sold, husband stops being a plonker and begins being the guy I fell in love with. Wants to come home, of course I say yes. He gives up job and we move north.

15th March : Bristol hosptial week in a room begins! EEG, MRI, Psychologists, Psychiatrists, Bloods, Canulars, exhaustion. Amazing support from Hubby.

 23rd March : Released to return the week later due to a misunderstanding for the visual fields test

30th March : Visual field test 8 hours drive in two days for someone to hold a pen from different directions and check if Reed saw it….grr! Ryan job hunting, me working three days. (Long story, meant to have been able to take the kids but was unsafe for Reedy)

April 2015: Granny funeral. MDT local and national both agreed on surgery being only real option left. Seizures gotten a hell of a lot worse; 

  Anxiety so high, not effective communication with and between hospital teams, panic attacks, missing home and consultants. “We’re moving home”. Pack up house, let work know (not that I was much use at work!), beg landlord, pull out of house sale, swallow pride, upset family, sell belongings, buy parent facing pram to reduce cabin fever. Start nitrazipam, stop nitrazipam.

May 2015: Move back to Devon (two trips due to europcar being crap) hospital stay start of tonic seizures. 

  Try Keppra. Move into house. Meet Surgeon. Start counselling again. Enjoy my amazing husband returning; who said giving things a second chance would only end in tears clearly hasn’t got a chap like my Ryan. Build shed “Dave lloyds”. Start blog.

I think that’s you up to date. Any confusion or questions just ask… Blog posts carry on from this date…. 


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