Like a Curate's Egg...

I don't know how many people are familiar with this expression - like a curate's egg - good in parts...
Basically it means a situation or item which is good in some parts but rotten in others.

That's pretty much where I feel we're at with the younger two boys.

After the total devastation of the other week we saw the paed for N. There's not a heck of a lot anyone can really say or do now. We're switching N to a different ADHD med - Strattera - which according to all the doctors doesn't have any effect on appetite. However on my reading from Medsafe and later the actual packet insert decreased appetite is second on the list, second only to constipation which is a significant, existing problem for N - and which can have it's own negative effects on appetite...

His ADHD is actually under pretty good control with the dexamphetamine so we didn't need to do this and the risk profile for the Strattera is much higher so if it doesn't work then I, for one, would be happy to move him back.
That said though it's not a controlled substance, we can get repeats without needing a new script and it's once a day dosing instead of 3 times a day so there are some bonuses there too.

I have done more and more reading and research on N's situation, plotted the last two years weights and so can marginally see where the surgeon is coming from. The anger isn't white hot any more although I'm exceedingly disappointed in the lack of communication. The yo-yo act is one I ought to be used to really since he went back and forth for about a year with T as well. The frustration is still there though but largely directed at the agonising situation we find ourselves in. Even the paed said if the med change doesn't work and one more med added doesn't help then she'll certainly look at the correspondence through Health School situation.
N narrowly missed being admitted to the hospital for who knows how long when we saw the paed on Monday but we explained our reasoning for strongly not believing that was the best approach and she agreed. If we need to go to the drastic steps of the next med then I really want to push to get other supports to increase the chances of success as much as possible.

It would appear that N's situation most closely matches the diagnostic criteria for either "Feeding Disorder comorbid with a medical condition" - which can continue to exist after the medical condition (reflux and later food getting stuck in his nissen) is resolved, or "Post Traumatic Feeding Disorder". While the PTFD (google it - they really do call it that!)  often  has a one off event triggering it, it can be triggered by repeated GI insults as well and I'm really beginning to think that's where he sits. I've said for a long time he's scared to eat and afraid it'll hurt.
It might not get us anywhere but it's good to have a new term to search and I'm still doing heavy duty reading on treatments as that way I can have studies behind me to counter the surgeon's "studies say might help but might not" stance.
One of the vital and significant things to come from either of those diagnoses is that it is not an eating disorder and treating it like anorexia et al can actually make things worse.

And so that's the rotten part of the curate's egg.

The light, fresh and enjoyable part is to do with T and his eating!

Ever since he started burping a lot more a few months back and we felt the icy clutch of fear that the 'gloopies' were on the way back I've worked harder to get him to drink more of his formula. He seems more comfortable with fewer tube feeds and the burping levels seem to have largely decreased to more normal 6 year old boy 'because I can' levels!
Before he'd do strings of burps and then wind up groaning. Now he's full of grins and "Sorry, I can't help it!"

So I was slowly coaxing up the volumes with his Neocate during the afternoons as his programs on tv run longer then. He'd been drinking at least some of his Neocate every afternoon for about the past month and by increasing 10 ml every few days so I'm not pushing him too hard - and he's not freaking at an ever increasing glassful, which he was doing.

Anyone who has or had had a child with food allergies, especially dairy allergies, knows that while Neocate is a fantastic gift to mankind in terms of covering nutritional bases, it tastes vile.
Even the powder smells vile.

And so T's afternoon drink has been a bit of a performance - I measure out the formula, lace it with enough vanilla essence to turn it slightly brown and keep it really really cold. When it's time to drink we measure out the required amount into his special penguin cup and supply him with a straw. He also says that it only tastes good with chippies so he gets a small handful in a bowl. He has this process where he measures the chip against the formula levels and that determines how big a sip he's going to take - I think, I've never quite got the rationale behind this ritual. But whatever it takes to get the revolting stuff down him!

I've been slowly increasing the afternoon drinks and taking it from the morning tube feed volumes. I'd planned that once I got him down to only 100mls it wasn't worth tubing so I'd add it to his night feed. He was down to 140mls...

Monday morning and we were off to the paed for N. None of the grandparents have managed to come to grips with the tube feeds so I persuaded T into drinking his morning lot and promised him I'd tube the afternoon one then. He agreed and all was fine. Come afternoon and T announces there's no milk for him. I looked in the fridge knowing there was plenty of formula made up and light dawned...he meant pre-mixed with vanilla essence to drink.
He'd forgotten I was going to tube it.
I wasn't about to remind him but fully prepared to trot out the 'Oh I forgot' line if he baulked at any point.
And he drank the lot.

At that point I reminded him and told him how clever he was and wasn't it wonderful not being tied up to his pump!

And since Monday he has drunk both 'feeds' everyday. We've agreed they are 'drinks' now not feeds because he's not being fed them.

This is a massive break through because he's had two tube feeds a day since that dark dark day in Oct '10 when we realised just how badly we were losing the fight and he needed extra regular nutrition because he just wasn't getting enough to cope.

I'm still working towards swinging it all to the afternoon, up to a 200ml max, because we're hoping to be able to send him to school! We've found a school, class and approach which we think will work well for him. There are still a lot of hurdles to jump to get him there but one of the biggest was getting him off tube feeds in the day and we've done it! We do need to get rid of the morning drink totally due to needing it to stay cold but we had a huge boost in that direction this week with a massive 500g gained in 11 days!

So not content with losing the day tube feeds (and saving me a good hour each day in feed supervision and clean up) he's also scored a total volume decrease as well. He's only needing 90ml in the morning thanks to the decrease and is up to 160ml in the afternoon - so it's all within reach.

His total solid foods are still a long way short of normal for his age but increasing as well and considering he's grown 5cm in the past 8 months as well as gained 3kg in that time he's making really good progress!

In T's case the light at the end of the tunnel really does seem to be the end of the tunnel. We may even have to start thinking about his "Bye bye Pump party"!

We're thrilled, he's thrilled and so was the dietitian today.

It would have been an altogether fabulous appointment today if I hadn't asked how many calories per day N should be getting. Quite apart from the fact that it sounds like a totally unattainable 2300 cal a day when she plotted his current weight on her chart her immediate response was "sh*t!"
Um, yeah, I guess it's nice to know I'm not being paranoid after all - and maybe a re-referral at least for a one off assessment of where N's at might be a good idea...

And so life is definitely like a curate's egg...