Achy Breaky Heart

N's eating has become a mission once again.
A major mission.
In late Nov-early Dec he suddenly stopped eating once again.
Some of the issue was caused by trying a non-stimulant ADHD med which had the side-effect of nasty stomach pains - like wake him from a sound sleep crying level pain. But we'd tried the new med, in part, because he'd stopped eating.
Since switching back to his usual med I have managed to get his usual 15-20g of rice bubbles, sugar and milk re instituted as breakfast. But basically that's all he's eating.
Thank heavens for Ensure!

But even getting that into him can be a battle and as a result he lost 1 kg in the past month.
I'd requested a paed dietitian referral at the start of this year - before he lost the weight. Once he'd lost it I emailed the dietitian because I hadn't heard from the hospital or got an appointment yet.
I had her email as she and I have worked extensively together over T and so I asked if we could make T's upcoming appointment for N instead as T was doing well at the moment.
So yesterday was the day.

Thanks to the vagaries of different scales, winter clothes instead of summer ones and a good lot of constipation in the past few days N managed to clock in 800g heavier than he was 2 days earlier. This means instead of being plotted below the 3rd centile where he really is, he's been plotted on the 5th for weight and so the verdict was 'he's growing well thanks to the Ensure'. Actually, weighing the same as he did in July last year ISN'T growing well for an 11 yr old, and his height should be climbing more rapidly too at his age - and it's not.
He gets tired rapidly and weepy and always complaining of being cold - so not really doing well at all.

But the really heart-breaking thing was when the dietitian was talking to him. He'd gone in scared about demands being put on him anyway, either more drink, or to eat.
Her proposal was for N to try tastes only of food. A single mouthful - swallowing is optional!
The only mandatory thing is actually drinking all his Ensure.

As she started talking he put his head down, he brought his feet up, he hunched his shoulders to his ears.
I couldn't see his face (she could) but I could hear his voice shaking as he answered questions - and proposed reasons on why this proposal might not work.
She commented to him that she could see the idea scared him but it's literally only one mouthful and he can have the choice over which part of the family meal it is and if he swallows it or not.
It is also limited to a taste only - even if he wants more - because N has an outstanding track record in sabotaging himself whether he means to or not. He'll get all fired up about dinner, drink his Ensure like crazy to get to dinner - and then wind up so nauseated there's no way he could manage anything - and very reluctant to drink the next day!

But it is so sad, so heart-breaking to see him so scared about something so minor and so normal.
I wanted to scoop him up in a huge hug at that moment and rock him like you do a startled infant.
What an awful journey we've travelled to get to this point! The poor poor kid.
He wants to try, wants to eat but just never ever ever follows through and certainly not reliably.

And so as we very very slowly overcome this fear (and I caught a glimpse through this of just how long a road winds before us) the next challenge will be dealing with the drink volume issue - the need to nag to get it down and later, as we make progress, the need to decrease the drink to help encourage the emergence of an appetite and interest - something N hasn't done for 4 years 4 months and counting - but prior to him actually being able to eat enough. So we are going to have to investigate (again!) alternative delivery methods - and soon because the way things are he is simply unable to attend school.

He needs a year of ordinary school before starting secondary. I've always said that and our experiences with W have simply confirmed that opinion at a professional level - and shown how long the battle to get appropriate services actually is. It has taken us 7 1/2 months to finally achieve what we wanted and needed for W and even though they have said he can do Correspondence I'm yet to have any contact from anyone let alone any work for him!!
It's now well into March and so if we are to have N ready - and/or fight the needed battles - we have to start shortly!

I have said for some time that his issue is a fear issue, just as I have also said that I can work with him and get him through this myself - if only I have the right tools.
So, as we essentially have W sorted for a few months anyway, N is the next cab off the rank in the on-going sagas.
Wish us luck! As I have said to the boys - when it comes down to something I really believe I'm right about and it is in their interests I haven't lost a battle yet. This one, yet again, is too important to lose.