Warrior of the Week

This week our Warrior of the Week is the gorgeous Jenson. Here Clare, who is one of our team tells you his story. Many of you will recognise Clare as always on hand with lots of support and advice.

Hi ,I’m Clare, I’d like to introduce my warrior Jenson.
He was born 30th September 2015, full term, swift , easy & no complications birth ( in fact, I had him at 1.30 and was home for 4.30, 4th ( and last!) child 😂

Around the end of January 2016 I started noticing him doing “strange movements” (though over time I’ve seen videos as early as early December of him doing them )I’ve cursed my self over and over for not picking up sooner that this was something to be concerned about!  You’d think a mature mother of four ” would know” I didn’t 😢 until around the middle of February he started to do them more and more , and and withdrew into himself . He stopped smiling, would lie for hours in his basket just staring , at one point I thought he was deaf and blind, but he would look at us when called, and watch tv, now and again.
I first when to a HV at a weigh in clinic, it didn’t occur to me to video what was happening , I tried to explain my concerns and she literally shrugged her shoulders, that was it , later that week I called my own HV and she came round for a visit, she seemed more concerned over his cheeks ( he had quite bad eczema at the time) she prescribed some lotion for him, took my concerns about his ” delay ” seriously and referred us for multidisciplinary . During the visit he started doing the ” thing” I tried to get her to look but she wasn’t really listening and missed it by the time she looked, towards the end of her visit she could tell I was really concerned most above everything about these “things” he was doing.

She advised me to go to my GP, she got me a phone consultation with him for that day ( it’s like trying to get an appointment with the queen !) I was thankful for that at least.

So that day I spoke to the doctor , told him ” my son is lifting his arms, legs and his eyes roll back all though the day” he asked me if he’s loses consciousness ,which he didn’t so he “wasn’t too concerned ” told me to try and video it and book an appointment online ( online, the earliest is at least two wks ) I did this and waited another two weeks . I had a video all ready , was really hoping for some answers. He barely looked at the video, a quick glance and told me ” it’s nothing, probably tics” he asked me a little about his development , I told him “he doesn’t really like his toys and is often spaced out, to which he told me “he’ll be ok, sing to him, babies like to be sung to” .
A few weeks later his “thing” progressed into something very scary, he’d hold his breath and scream, it was horrid. He did it once, again, I was convincing myself it’s this and that, ( in actual fact, I was going out of my mind !) the second time I went straight to A&E. still then , I felt like a fraud, over dramatic running off to A&E, it’s for emergencies right ?Waiting for my husband to come home and take us I’d somehow stumbled across epilepsy , I found one video describing them as ” west syndrome” a quick google left my blood cold. I mentioned ” west syndrome ” to the A&E doctor he didn’t have clue, he asked me if Jenson needed a poo on looking at his videos …… colic ? reflux ? By then for me enough was enough, I needed answers, he knew. He went off reluctantly for a second opinion , when he came back the whole game had changed, his face had changed, he was more serious and listening , the next thing I knew we was up on a ward, having questions thrown left right and centre, he was having blood pumped out of him ,every vain possible, everything got scary !
The next day we were sent to our large hospital for an eeg and was back to our original hospital by late afternoon and on medication , steroids, started by tea time. We saw a dramatic reduction in his spasms within 24 hours, he was smiling, trying to play, I was ecstatic !

Once the medication got into his system we did lose all that again for a bit but soon returned during the wean.
It was around a week after diagnoses that it hit home what he had and what his future could actually hold for him. We had a relapse a month after weaning , we tried sabril ( I couldn’t face steroids again !) he hasn’t had any since .
We’ve had therapy and more appointments than I could count , MRI scans, lumber puncture, emotions up and down, our whole lives have been turned upside down, our outlook on life has changed, we’ve changed ! …fear, excitement when he ate a banana for goodness sake 😂,  it’s been a hell of a roller coaster ! But I can’t deny when I was sobbing my whole heart out a year and a half ago, wondering what positive could actually come from this being thrown into our lives, that there has been, plenty.

Lots has changed for the better and I don’t take one day for granted, even when he’s having full on toddler tantrums , I sit back and remember there was a day last year when I didn’t know if he’d be able to walk, talk even smile again ! My warrior has come into my life, blown it apart and made it whole again, he’s walking , trying to talk so much everyday, plays with his toys, loves his family he’s delayed in some areas still, and who knows what his future will hold, ( I won’t lie, what may lie ahead keeps me awake at night even still) but I also don’t take for granted that this is an amazing outcome for an IS warrior so far. He’s two on Saturday , his birthday last year was still full of dread at what his life would hold, a year on and we now have hope. one day at a time, may our warriors long continue to amaze us every day , 💜💜💜

Leave a Reply