To or not To tube...

"To Tube or not to tube, that is the question..."

Apologies to William Shakespeare of course but Hamlet goes on to wonder if it's better to go on fighting or basically call it a day. That pretty much sums up the situation at the moment with T.

We got our samples of the Vivonex formula on Friday and I got sooo excited to discover that if T could drink 1 litre of the formula a day then he'd be covering his daily levels of protein, vitamins and minerals. Yes, that leaves fats and carbs but I figured a couple of 'doses' of cake a day would see to that issue.

He was drinking around 600-700mls a day already with no major 'fall off' in his food intake. Trust me, I'd be able to tell if his eating went from abysmal to non-existent! So maybe we could do 1000 mls instead, not too huge a jump really???

They recommended that you use milk shake syrup to flavour the formula - as it's so revolting but no one will tell you that! So I achieved the almost impossible and found two different flavours of milkshake powder which were free of dairy and soy - who makes dairy and soy free milkshakes anyway??!

What I didn't count on were 3 different factors -
T basically eats homemade food only. Even the 'natural flavourings' of these powders seemed too strong for him. He drank about 30 mls of each flavour before declaring his 'mouth blurch'. A weakened solution simply meant he could taste the formula!

I did try him with the flavourings in his current formula so I'd know it was the flavouring he was reacting to not the formula itself. Strawberry and banana both had the same result. I managed to find an actual syrup today at a different supermarket and it was chocolate so I bought that too, with the same result.

The other factor I didn't take into account was the fact that the Vivonex formula itself is really nasty! Poor T - one mouthful and he's spitting frantically on the floor (poor Mummy too!!) and then racing off to the bathroom with a cup. That's where the only tap is that he can turn on!
The face he made each time we tried it would have been hilarious except that I was looking at this formula as the Holy Grail to save us from the tube.

The last factor I forgot to consider is that his normal formula consumption is around 400-500mls a day. The hot weather suddenly disappeared over the weekend and his consumption dropped equally suddenly. 400-500 mls to 1 litre is a huge jump and pretty much impossible to0 ask him to do - and we're heading into winter...

I felt quite desperate about the situation over this weekend but as P said "This is T we're talking about, of course it's not simple!"

And so I'm back to the drawing board to see if I can pull a gradual change in formulas, 10 mls in 190, 20 mls in 180 etc. I'm not holding my breath - and all of this has pretty much scraped the bottom of the barrel in terms of remaining tricks to try to avoid needing tube feeds.
At least the taste won't matter if it's tube fed!

And in the meantime - anyone for a milkshake? We can now do strawberry, banana and chocolate!!

Getting to the heart of the matter?

So the day dawned bright and beautiful - and we spent a lot of it inside!

W has been having dizzy spells accompanied by heart palpitations for a while now and so we were referred to the cardiologist. This is a new specialist for us - we've 'done' paediatricians, audiologists, speech therapists, occupational specialists, developmental paediatrician, developmental therapists , psychologists/psychiatrists, orthopaedics, optometrists/ophthalmologist, behavioural intervention workers and dietitians galore - but not cardiology before!

He did an ECG, an echo cardiogram and a stress echo - more ultrasound after treadmill.

End result - essentially healthy heart but something is going on. I hate to think how much all of that is going to cost us - thank heavens for health insurance!

So the next time he has an episode I have to take his pulse and record the rate. We also have to rush him to the hospital if we're close enough and get an ECG done. He needs one done during an episode for the cardio to know what's happening. The other possibility is to take him in to the private hospital and get an event monitor to attach to him so that he can wear that for about 2 weeks and hopefully have another episode while he's wearing it.

But the wonderful news is that he doesn't believe it's anything life threatening. I knew we weren't going to get answers today really as the episodes seem random with nothing in particular triggering them - so we'd have to be really incredibly lucky to catch one while we were there! But it would have been nice to have had some kind of answer rather than now having to wave a vague butterfly net at the problem.

W's happy - he was worried he wouldn't be allowed to play soccer - first practice is this Sunday!

The doctor did seem to think that the cisapride W was on for nearly 2 years for his reflux wouldn't have any effect - but he also said it didn't have any cardio effects at all - when it's know to extend the QT sequence. So I'll have to keep researching because the last thing we need is to be creating a time bomb in T!

And so we're in a holding pattern for W, it's back to the battle front with T - time next week to chase the GP over the formula, antacid and surgery for T. The hospital we were at today is where N had his surgery and where T will have his. I watched as they wheeled someone past us all dressed up for theatre and I could see T's tiny body in my mind's eye, lying on one of those huge beds...so not looking forward to this.

And so we keep trucking onwards,
Eleanor.

Easter when you can't eat choc...

As you can guess from the title we had an interesting Easter this year!
Last year T really didn't mind too much about the fact that he can't eat chocolate - dairy AND soy allergies. He was rising 2 and it didn't register too much.

But this year he's coming up 3 and he knows when he's missing out totally. He doesn't mind if he has something different, so long as he has something!

Easter Sunday morning the older two started the morning eating an entire choc bunny each - (Persil has a 10 things a kid should do before 10 and describes these as rights, I quibble with the "rights" issue) but I think there's no point in being a kid at Christmas and Easter if you can't start the day with sweets/chocolate!! And I left out 9 gummy snakes for T (who in true form only ate 8).
So T was happy with that.

We got through church - very crowded and we were late and unable to sit in our usual seats. That upset W a little and T had no space to play but we got through it! Then they announced an Easter Egg hunt for the kids after church - @#$%!!! If only I'd known I'd have brought something for T!!

T threw a major tantrum and he wasn't the only one sitting upset in the church foyer. There were a couple of other kids unable to eat the choc and one who couldn't even go out where the kids were hunting and then eating because of the risk of nut traces. They had to leave once other kids started to come into the foyer!

Why, why, why can't people think a little about food allergies? It's not difficult - some gummy bears or snakes to quietly give to the kids who were allergic would work nicely - avoiding egg, dairy, soy, wheat (in many choc eggs) and nut problems! The numbers of food allergic kids are rising and it's taking longer for them to grow out of it so everyone has to get with the plot eventually!

Nothing like a little Google Frustration....

Since this blog is so new, probably no one's looking at it but...
I have now spent heaven knows how many hours over the past weeks and about 3 hours yesterday trying to track down some flavouring sachets to go in formula.

Sounds bizarre? T is currently on a Pepti-Junior semi elemental formula due to his allergies. It tastes pretty revolting and oddly enough he won't drink it straight. When N was put on it at 6 months old the taste was only a transition problem and after that he was fine. T started on it at 18 months and to ease the transition I flavoured it with vanilla essence. But that 'transition' measure hasn't been able to be phased out - he just won't drink it without it. I tried cutting it down and again no joy. But he's becoming more and more aware and now he won't drink it without a good lacing of Vitadol in it as well - an orange flavour. I used to be able to fobb him off with a bottle of water in a vitadol bottle and coloured with vanilla essence - but even that's not getting us anywhere!

He's about to transfer to Vivonex Paediatric which is known to be disgusting - they even produce flavour sachets to help!

However, here in New Zealand they stopped funding the flavour sachets and now I can't even find where to buy them here. I'd buy them over the net but I'd prefer to support our local chemists - and our rules are really tight over imported meds - can you imagine a box of powder sachets stopped at the border...um, think NOT!

Anyone, anywhere know of a reliable internet pharmacy which ships to New Zealand - the other challenge when we're largely dealing with US based companies!
Vivonex is made by Novartis but I can't see the sachets on their site - but I can't remember which site I was looking at - NZ or overseas...ah, the Google fog!

Just Starting out

So here I am!
I've tried to set up a blog elsewhere but something's gone wrong so I figured if others can do this then so can I!
Hopefully I'm going to find time to blog fairly regularly...but typical of life with my prem kids, setting up this blog was interrupted by a phone call with T's dietitian!

Who am I?

I'm a full time mother - truly full time with this lot!
I homeschool, largely due to the kids not getting their needs met in our wonderful educational system here in New Zealand, but also due to bullying problems - which seems to be a universal problem. But I have found that the homeschool lifestyle is good - so much less stressful than dealing with school crap everyday!

I also have a little company called Little Tom - www.littletom.co.nz which sells properly sized clothing for premature and small new born babies.

I have 3 wonderful boys - W aged 9 and a half, N aged 7 and T aged nearly 3.
I also have a great and supportive husband - P. He does hugely long hours at work and sings as a paying hobby so often it's just the kids and me 24/7 or very nearly.

Apart from the obvious reasons to blog I decided to do this because my kids are the 'invisible preemies' or prems. They are 'late' prems. Still prems and they still struggle, just in different ways than say a 24 weeker but struggle none the less. They get ignored and forgotten in research, by doctors, by teachers (even though it has been shown that kids born even as late as 36 gestation are hugely more likely to have reading, writing, maths and fine motor skill problems and delays). My boys will carry their prematurity through life with them just as much as any other premature child.

W was born at 33 weeks gestation and weighing 3lb 14 oz or 1795g. He got through the NICU okay but once home the shit hit the fan. We dealt with reflux, failure to thrive (FTT), food aversions, apnoea episodes (where he stopped breathing in his sleep), developmental delays and eventually a diagnosis of Asperger's Syndrome - a form of high functioning autism.

There is no family history of Autistic Spectrum Disorders and the psychiatrist who diagnosed him said he had seen this more and more often in kids who were born prematurely, especially when the birth was difficult. W was delivered by emergency caesarian section due to my pre-eclampsia. He was deprived oxygen for a short period around his birth and didn't breathe on his own for a minute and a half. So who knows what actually happened to him...
They told my husband that they weren't sure he was going to make it through his first 24 hours but he can't remember why and I was too ill to be told - or so they decided anyway.

He's a wonderful kid these days anyway!

N was born at 36 weeks and 3 days, again an emergency caesarian section due to my pre-eclampsia and weighed 5lb 12 oz or 2620g. He had only 3 days in the NICU as he had respiratory problems and needed CPAP for a couple of days. He then came to me in the ward and we went home all together! N also dealt with severe reflux, feeding problems, FTT and some developmental delays. He seemed to get through it all but middle of last year he was diagnosed with ADHD and is now on Ritalin. This has made a massive difference to all of us - and again kids born prematurely, even as late as 36 weeks, have a 10 fold increased risk of ADHD - and again we have no family history. N also had a Nissen Fundoplication in October last year to finally deal with his on going reflux.

N is also a wonderful kid if a little challenging at times!

T was also born at 36 weeks - exactly, again and emergency caesarian section due to my pre-eclampsia. He weighed 5lb 11 oz or 2580g. This time I managed to not have a baby in the NICU and he stayed with me all the way through. T has struggled with feeding and weight gain pretty much ever since birth due to reflux. I was convinced he was refluxing at a couple of days old although told all prems reflux and not to wish it into reality - typical pat on the head to a postnatal mother. Never mind all my experience with reflux and the fact that this was my 3rd child and my 3rd preemie!

At 3 months old T got horribly thin and wound up needed nasogastric tube feeding. After 11 days in hospital he came home - plus tube. We managed tube feeding at home for about 3 weeks before he seemed to be doing better.

Due to some research and challenging on my part T's cow's milk protein allergy was picked up around 18 months old - and we discovered an allergy to soy at the same time. So the poor kid can't have any dairy products - or any soy! A huge culinary challenge.

T is now nearly 3 and still dealing with allergy problems and terrible reflux. He's still on meds and still underweight. We are battling on a daily basis to get him to eat anything much at all. He's now just hanging on the 3rd centile for his age, having dropped down the charts all year.

At the moment we have a dietitian, paediatrician, paediatric surgeon and GP involved with his care. We are waiting for 2 different lots of speech therapists at the moment. One lot to work with him on his pretty delayed speech and another lot to work with him on feeding issues.
But feeding therapy is going to have to wait until after we get T through surgery for his reflux as well. It appears, especially after having talked to the dietitian again today, that he is going to need to have a feeding tube surgically implanted after his nissen.

That's a thought which scares me witless and makes me feel like I've failed my child. But realistically, with developmental delays, hugely difficult feeding, all the learnt behaviour from reflux and his already low weight, it'd be irresponsible to go into his surgery without that kind of option and I actually will be failing T if I didn't take all steps I could to ensure adequate nutrition. His diet right now is horribly deficient - the dietitian says that if he weren't on formula he'd be suffering from malnutrition!

He's also a surprisingly happy and fun kid despite all the problems.

So that's me in a nut shell - I'll try and blog weekly if nothing else!
Eleanor.