FTT at 3

I don't know if many people are all that familiar with the term FTT.
It's short for Failure To Thrive.
It's a term for any child who is below the 5th centile for weight, height or both. Some things say FTT starts at the 3rd centil, some say falling through a certain number of centiles over x time period qualifies.

It's a nice, clear medical term - and it really hurts as a parent to have your child labeled it.
I know it's just a medical definition and doesn't necessarily reflect on the parents but as a parent your job is to get your child to thrive!

W was described as FTT as a baby and then preschooler due to feeding problems. Once we had a safety net of pediasure under him I could back off the food fight and eventually he came right.

The first time I saw him described as Failure To Thrive I was devastated. I couldn’t manage to keep him inside long enough and then I couldn’t even get him to thrive!!

When the same problems reared their heads with N it still hurt – W had been on pediasure for about 6 months and was doing much better. But at least with N I knew we could get through it with good dietician help.

With T it was hard not to know when he was 3 months old. He was born weighing 5lb 11 oz and at 3 months old was around 9lb 6 oz. He was skin and bone. You could feel his bottom bones through his nappy and I was scared for him.

But we’d done well for about 6 months in the 6 – 12 month range and then did okay until 15 months or so. I knew once he hit the 5^th centile that he’d be officially FTT, certainly once he hit the 3^rd centile.

But on Friday I had to get the doc to fill out some forms where she had to list his dx in order of impact on him and she listed FTT first on the list before his reflux.

That hurt – again. It’s been a year or so since I actually saw it written down, pinned against one of my kids.

You’d think, really, that they could find some kind of term which doesn’t make parents feel like such a failure. Most parents with an FTT child are busting a gut trying to help the kid and really, really don’t need guilt added to it even if it’s not intentional!

Both of the older 2 had lost their FTT label by the age of 3. T is 3 years 2 months and is only getting worse. He has only gained 9 kg in 3 years of life. He is not on the chart, even on the 3rd centile any more. There is no real end in sight for him - and that feels awful! I don't need the FTT baggage as well.

I can do the limbo - medical limbo that is!

Well, a veritable feast of updates lately - hopefully there won't be such a long gap!
Part of the gap was the lack of anything to report - I've learnt a new dance - the medical limbo dance! This doesn't involve going over hurdles, or under them - it involves doing nothing while you wait for things to happen - and they don't!

Poor old T - he saw his surgeon on 29 April (ironically his birthday!) and we got told that because the biopsy results came back normal we needed to do a pH probe test to see how much he is refluxing. Surgeon agreed that his weight is of concern and mentioned a gastrostomy tube off his own bat - and mentioned that to the paed in his letter! So progress at last!
We explained our hesitency to go to a certain hospital and he said it'd be fine to go out of town and that it'd take about a month to organise. Fine, okay, not a problem.

Then he rings back and says he can't get him in at one hospital and he'll try another. A week later we find he can't get him in there and will try a third.

By then we were due to see the paed and she says she can organize it at her hospital and it'll only take a week or two max. She said she'd call the surgeon and talk to him about it.
Okay the max of 2 weeks takes us to the length of time the surgeon said anyway and this way we don't have to go far so all cool.
She calls back the next day and says she's got the surgeon to cancel his arrangements and someone will call me from her hospital.
And we wait.
And we wait.
And we wait.

I get the GP to hassle, no joy.
I run into the paed and ask - oh, the first week in June.
And we wait.
And I get the GP to hassle - who does some serious hassling!
And finally last week we get a call to say someone will call us later in the week - yay, thanks for nothing!

And then we got a call - it's Tues 24 June! They'll put the probe down and then send us home. I have to spend 24 hours trying to stop T from pulling the probe out - and then we'll go back and they'll pull it for him :-)

So we have waited nearly 2 months all up.
In that time T has stopped gaining weight and his eating is as awful as ever. If he was borderline for a feeding tube before he'll have earnt himself one by now! At 3 years and 2 months old T weighs a whopping 11.5kg or 25lb 3 oz!
He was on the 3rd centile for weight and has now dropped well off.
His BMI is now 14.2
I have just realised that T weighed 2.5kg at birth - he hasn't even gained 10kg in 3 years!!

He is seriously underweight and his nutrition is so bad that the hairdresser has pointed out the reason why T's fringe looks so straggly is because his hair is actually falling out and growing back thinner - and then asked what the kid eats.

In our two months of medical limbo T has now missed a June surgery date and a July surgery date. By the time the results are back and we actually get in to see the surgeon he'll have missed an August surgery date.

And so the child will continue on his path of gentle starvation until September at any rate.
He is _not_ the only one about to lose some hair!

However - I've learnt something from the special dance called medical limbo!
When he goes into hospital I'm going to actually check on his file that they write down the results are to go to his surgeon - and to the GP as a back up. The GP has written to the surgeon to keep him up to date and told him about T's stagnant weight.
I am going to find out exactly when the results are expected - and book in to see the surgeon 1 week AFTER the results are due.
I am going to get the GP to chase the results FROM the day they are due, if she doesn't have them, until she has them. Then at least she can fax them to the surgeon if he hasn't got them.

I am not going to just trust the system will work and I am not going to let any more time escape.
T cannot wait any longer.
The surgeon, after any surgical intervention, will sign T off.
At the worst, the paed will sign T off after he outgrows the paedatric level.
We cannot sign off on T.
And T will have to live all his life with any physical, intellectual and medical fallout from his repeated and prolonged malnutrition.
T cannot wait any longer.

And W is 10!

About 10 years ago today probably the hardest thing in my life happened.
10 years ago today I was discharged from hospital a week after giving birth to our first child - and we had to leave him behind.
10 years ago today W got moved out of an incubator into a cot and got dressed for the first time. I helped dress him and move him - and then had to walk out and leave him.

Through part of my pregnancy I had this cute little fantasy of nudging P at some point in the night, "Honey, it's time!" Who knows how many people really get to do it that way??!!

But for me it was all a rush of urgency, panic and total unpreparedness. P was even out of town - W wasn't due for another 7 weeks after all!

I hadn't been feeling great but not terrible either and certainly didn't suspect when I turned up for 'monitoring' with my midwife that in fact I wouldn't go home without giving birth.

But pre-eclampsia is a mysterious and lethal beast and so I was actually seriously ill and both W and I were in danger of losing our lives.

Within about 4 hours of turning up to the hospital W was born and P and I were first time parents to this tiny little being wired up to all sorts of machinery and with tubes sprouting from him. We did actually sit by his incubator later in the week and debate if he looked more like a rat or a monkey - all 3lb 14 oz of him!

It's amazing to think of the roller coaster we have been on in our parenting ever since the initial crash landing. It doesn't get any easier outside the NICU - W behaved himself there!
It was only once he got home at 3 weeks old that the fun started with reflux, apnea episodes, feeding refusal, low weight gains, the wondrous term FTT - Failure To Thrive, developmental delays, Sensory Integration dysfunction, possible mild CP. He went through a stage of collecting diagnoses and I felt like they were stripping my child away from me, what was going to be left after they told me what was wrong?!

Of course I did come to the realisation that in fact the diagnoses didn't change the little boy I had in front of me - except to make it easier to help him. Having made that mental leap certainly helped as trouble rolled in with N, and W's later Asperger's diagnosis.

These days W is a great kid. I was talking to his soccer coach the other day and he was saying you'd never know W had an issue. Then we went to a home school activity and W had absolutely no idea of how to break into a conversation, start a conversation or even play with the other kids. Meanwhile N is racing round talking to everyone and making friends. T ran out of energy and sat and cried - but that's another issue!

As I watched W the pain of watching him struggle at playgroups, kindy and later school all came flooding back. Yes, he's doing well in terms of being happy, rolling with the changes in routine, doing pretty well at his school work, happy in his soccer and swimming, enjoying piano, interacting with family and familiar adults - but throw him back into a noisy, semi chaotic situation where you have to cope socially as well as cope with the lights, noise and movement and he sinks fast. You could see him shut down. So we've found out about a social group run by our local Autistic Association and we're going to sign him up! He has commented before how he likes being with "his people". That hurts me, although it shouldn't I guess, but it feels like a rejection of all the work I've done to help him, like I've forced him into something he isn't. I know it's for his own good - isn't that a phrase we hear far too often - but is needed for any success in adult life.

W has come so far from that tiny technology dependent baby, that toddler who wouldn't eat and ran screaming from a plate of food, and that child we rescued from the h*ll school had become - to the extend that he was saying he'd rather be dead and had planned it all out.

I love him and I love the wonderful, responsible, mature young man he's growing into.
I can see he's a fragile flower and I do fear for how he's going to cope with adult life, work and relationships, but all I can do right now is to keep throwing opportunities his way and keep handing him and teaching him the tools he'll need on his path so that hopefully, once I can't be there to guide him, he can remember a bit of how to do it himself.

So much has happened since last posting!

Well, it's been a long silence I guess, but life sort of snowballed on me!
T has turned 3! And W has turned 10 - heaven help us!
P has seriously injured his foot...treading on a nail.
And I've learnt a new dance - the medical limbo - no, not going over hurdles, or even under them. Just not going anywhere at all! That'll be a post all on it's own :-)
Anyway we've been busy!

Here's a post I sent to a group I belong to as we approached T's birthday -

3 years ago today I was finally hospitalised for the last time in my pg with T. I was 35 weeks and 4 days and while that seems like the Holy Grail to some, when the OB asked me if I wanted to have this baby now my immediate and gut instinct was ‘No, it’s too soon.”

I managed to last an extra few days in hospital and made it to 36 weeks exactly before I started to twitch and pre-e caught up with me completely and the game was over.

We celebrate T’s birthday with a party tomorrow – and it’s the first that he’s actually understood and got excited about – even double and triple checking P’s coming! Yes, we are married and live together but P’s often out and so T

It’s funny really, while W had various dxs by age 3 although not his final and most complete one (Asperger’s), and we thought we had N taped (ADHD dx last year) I feel that T holds a lot more shoes to fall and that we really don’t have any measure of where he’s at or what’s ahead like we did with the other two.

The GP on Friday was saying that T's reflux surgery will be a major step out of the way and well on our way to sorting him out. I pointed out that that is just a small step on the way to sorting out his eating and also his developmental delays. Maybe as protection for myself, maybe it’s just the way I work, I’m focussing beyond the surgery. That I can’t do, but recovery, eating and developmental progress I can work on. That’s where I feel I need to concentrate now.

But it amazes me, with all the pain and trials T has been through that he’s still the sunny person he is! And that’s what we’re celebrating tomorrow – with a helicopter cake (heaven help me!) coloured blue as that’s the only colour he knows!!

T's feeding therapy

Well, today was supposed to be the rush, rush day with T seeing both the speech therapist who is going to work with his eating, and getting the biopsy results from the surgeon.

However....we have a junior doctors' strike today and tomorrow and I got the call from the surgeon's office yesterday to put off T's appointment until next week - I guess it's all hands on deck!

I don't mind really because I was going to have to watch the clock carefully and this way I could make sure we got basic info right. The therapist was really good and thorough. She said that kids who have things like reflux which make feeding unpleasant often learn to self-limit eating and won't increase volumes.

T is apparently eating a good range of textures and his mechanics are fine - it's just the volumes.

We really need to sort out his reflux and then she sees a definate need and real role for her after that. She's going to talk to her seniors about T's feeding post op and the pros and cons of a feeding tube for a kid like Thomas. She said she'd get back to me in a few days and that she'd write a detailed report on T and include a plan for him. She's going to talk to the dietician too and make sure everyone gets a copy of the report. I had my list of contact details for everyone involved with T so she can easily circulate everything. I also gave her a copy of the sheet with our concerns for T. She took photocopies of all of this month's food diary as well.

She did say I was already doing everything she'd recommend I do - including getting him involved in cooking (not that he eats it afterwards!) and that he is still fairly positive about food which shows how well we've done over the past 3 years. She also laughed at the surgeon's idea that once we operate he's just going to start eating - not a chance! Once we've fixed his reflux we've then got a long road of trying to fix his attitude to eating and volumes.
But I feel like we might get somewhere finally with T's eating - which is nice since he's eaten stuff all since Friday!

Eleanor.

We survived the first step in the process!

Yesterday was better in some ways than I’d have hoped and worse in others.

The #%$# anaesthetist called at 6pm the night before – end result I burnt dinner talking him through T! He told me he was going to put T under through an IV – so there went all the work I’d done in playing with a mask all week! Possibly just as well as on Wed T had taken to handing it back to me with a cute “No, ganks.”

The hospital has a tiny car park – and I got a park right by the door so I figured that was a good sign! 30 mins into it all and T decided it was time to go home. It was heart breaking as he trotted out one of his very rare 3 word sentences “Go home please”. He lost the plot when they bandaged up both hands for EMLA, but took his pre med well :-) the nurse was amazed, she thought it’d be the other way around!

He got his long awaited “Ride bed!” to theatre – and flipped! I think he realised that something really big was about to happen and he got scared. He did his red in the face, rigid scream thing even before the anaesthetist got his hands on him. I had warned them he had a temper as he started to lose it and they were impressed :-)

Thankfully, because of my experience with N I had decided to opt out of helping to hold him down and just went to the head and talked to him and stroked him. The anaesthetist kept telling me he’d got into the vein without hurting T and I’m sure it was fear which made T react that way. I’m very grateful for the fact that he said once they started the anaesthetic he’d go to sleep fast but it was quite amazing how fast he went. The nice thing was, as he went the sobs subsided. I know it was the drugs but it felt like he’d calmed down before he went to sleep.

He was only in for 20 mins and the surgeon came and told me they’d taken 2 biopsies and that his oesophagus was mildly inflamed, not terrible but clearly not normal.

Although we’re supposed to be waiting for the biopsy results the surgeon was telling me he’d do the nissen in early June, we’d need to do a barium study etc. So I’d presume from that that he knows what he’s seen in there and he’s clearly certain it’s reflux.

Then someone I hadn’t seen before came running into T's room and asked if I was his mother and took me to Recovery. I was worried until I got a few doors down the corridor and I could hear him screaming. I figured at least he was breathing! Even the surgeon was back in Recovery to try and help! As soon as T saw me he tried to climb out of the bed, showering monitor leads as he came. So they got a comfortable chair and I just sat with him as he calmed down and went back to sleep.

He slept for a bit more and then by the time we went to go home he’d been giving his nurse kittens by bouncing on his bed and making the whole thing rattle and shake! He thought it was hilarious – even though he did actually cut his leg on a toy on the bed in the process!

He’s pretty up and down today but reasonably happy – though his throat sounds sore and almost croupy.

So now we have the battle with the paed and the dietician about how T is to be fed.

We’re seeing the GP today for a weigh and measure and I’m going to ask her to get the paed appointment moved up – and also to get a clear and firm letter from the dietician explaining for the paed why she thinks T’s eating needs more serious addressing.

We’d like to get to see the paed in early to mid May – by then we’ll have the biopsy results and had a chat to the surgeon. We want to know exactly how much weight the paed thinks T is allowed to loose, what she thinks he’s actually going to be able to eat for those 6 weeks post op – we know the only thing out of his staples is formula. And have a firm plan in place to swing in immediately T loses that set amount. It’ll be mid winter and it’s not a time to stuff around with his weight. We also have an appointment with the feeding therapists for the 22^nd so that might help too.

So the procedure went well and he’s clearly not too traumatised by it. I’m now telling him he’ll have to have another “Ride bed” later. I had a fascinating conversation this morning with him “Tummy fix?” “No, T, tummy will be fixed later. You need to have another ride on a bed.” “No, no ride bed!” “You need to have your tummy fixed like N so you need to go to hospital and have another ride on a bed.” “Oh, k.”

Who knows what he understands really, but I’ve got to try, and I can’t tell him it’s all over when I know he has to go back, even if it is a couple of months away.

Eleanor.

Finally some progress!

The on going saga of T seems to be finally coming to a head.
I made a GP appointment for Friday to try and further co-ordinate and push things along for him - as I hadn't heard back about the new zantac, speech therapy, or from the surgeon.

So, typically as I was leaving the house we got the hospital admission forms in the post!

T is due in hospital for a gastroscope and biopsy this Thursday. So of course there's been a real flurry of activity to organize child care for the 6 to 8 hours he'll be at the hospital. I thought the point in going private was so we didn't get things suddenly dumped on us! But at least it's progress!

The GP called the dietitian and after they talked, she came to the conclusion that T needs a feeding tube - whether or not it's reflux. That now makes it a definite.

I don't want to do this - but something has to change. We've fought this food battle for nearly 3 years and T has won. I never thought I'd say that, but that's the way it is.

So the GP is now getting the paed on board - and more importantly up to date! So she can also direct the surgeon to go ahead with planning a peg gastrostomy tube.

The GP also chased up where we were at with the speech therapists who deal with feeding issues - and discovered that they've lost the referral! So she was going to sort it out and re-fax it on Friday, and she said that in light of T's worsening eating she'd class him as urgent! I don't know if I like that idea but if it's what it takes then we'll do it I guess.

So right now I'm trying to get my head around the fact that T is having his first general anaesthetic on Thursday. They like parents to go with the child while they give the anaesthetic - and I did that with N when he had his surgery last year. He fought the anaesthetic as they were giving it - suddenly thought of something he wanted to say and tried to pull the mask off!
It was just horrible - and awful to see the fight suddenly end.
But I'll just have to be strong - this has to be done right as he'll have another shortly and I don't want him scared because of my reaction this time round.

I'll keep people posted!
Eleanor.