Born in November 2013, he was normal delivery, red, had that thick white stuff on him. I noticed he was uneven, his left side (bottom) was markably different from the other side. He was red, kinda funny looking but he was mine and gorgeous!
As he grew he got more and more clever and beautiful, smiling, happy, occasionally wingy and clingy but most babies are.
His development was on track. Crawling, babbling, pulling himself up as would expect.
In July 2014 at 8 months, he was crawling, super advanced in my eyes then I noticed that Reed had started doing this weird jerking movement, mostly at dinner times.
Family, friends and doctors shrugging it off as “reflux” or startle or he is just tired.
I knew different, it was happening more regularly. So I went to the doctor. Almost certainly reflux. Dr google suggested constipation. Never in my wildest dreams would I imagine what the true diagnosis would be.
Armed with a video:
My regular doctor saw me as a emergency, so I trapped along with the three other children I cared for as a childminder and with the help of a visiting registrar we were referred.
Never been referred before so twiddled thumbs! What could this mean? They mentioned in passing, child climbing on me, one screaming something about “benign something of infancy” obs set about google doctoring! Holy moly dunno what this is!
Shrugs getting worse and more frequent I was desperate, but didn’t know what to do.
All the while fighting with my then estranged husband, (who is no longer estranged and fairly super to say the least)…. Anyway enough of that!
It was our beautiful Annabelle 2nd birthday and on the way to a family day out, I had dreamed about bumping into a paediatric Dr I worked for To beg her to help. My dream came true, with a tear in my eye I approached her, firstly I pinched myself, then proceeded.
“Oh I remember you! Did your children go to…. ” (good work Rachel composed, not desperate)
“Yes, oh gosh I remember… You had children…. I’ve had another…..”
(Small talk good, 2 years olds playing together, brilliant we can tag along!!! Whoopooooooll!)
Breezily I drop into conversation: “remind me what you do again…..(knowing full well!) …. Oh really, children’s dr you say!” (Composure gone) reed had a seizure and cue tears and desperation. ….. “thank god your here!”
True to her word she said she would call the “right person” as we need not panic …. PANIC!! But we need to act ASAP.
1730 that day a paediatric neurologist phoned me. So I emailed the videos and we were invited to a&e the next day (my birthday!)
Just to add a little more drama we were on our way and I accidentally (genuinely!) slammed the car boot on Ryans head, so as we signed into the PAU Ryan checked into a&e to get his head glued together!!!! Hehe!!!
An almost instant diagnosis if Infantile spasms was confirmed with an EEG. Not seen often we had a number of drs, cons, nurses looking on.
I was beginning to think that reflux that had initially been diagnosed was far more appealing!!
Reed maintained composure throughout unlike me!!!
Obs when we advised our nearest and dearest with the best intentions they suggested. “All would be okay” ” he’ll grown out of it, right?”
How we hope and dream that he will.