Sums it up really.
N saw the paed yesterday due to his eating etc.
She's happy enough with the static weight - at least he hasn't lost anything - one of my least favourite phrases around!
I have, however, got a bit of an answer to one of my concerns - that he was on the 20th centile pre nissen and is now hanging, just to the 1st - 3rd for both height and weight. She says he's seen a number of kids do this and they do a rapid growth and catch up around the age of 10 and keep growing until 19 or so instead of the standard 17. Looking at W's recent and continuing metoric surge in height which started about a year ago, he'd fit that pattern.
BUT - you do have to put in the calories to do that growth with.
We discussed the possibility of going back to 4 high cal drinks a day but I really feel that'd be a backwards step. He'll never feel hungry enough to eat if he's filling up on 800mls of high cal formula a day. So we're staying on the 2 drinks a day and adding meds instead.
As he's taking for ever to kick infections, developing mouth ulcers which take for ever to heal, hair thinning and becoming brittle, she's put him on a multi vitamin to help with that. He will also start taking an old school antihistamine called Periactin. This isn't because of allergies but because it has a side effect of increasing appetite so we'll see if we can force him into eating. It may or may not work, there are other appetite inducing meds we can try but this one's been around for a large number of years so has a good safety profile.
It may work for a bit and then wear off - we'll just have to wait and see.
In my research on the med last night I did discover that it is going to be dropped from our drug funding schedule in September so even if it works we'll have to find a substitute by then.
I also took in his script for his high cal drink and it dawned on me last night that if the drug funding body does as it has announced it wants to do, then this will be his last script. They want to reduce the funding which will mean we can't afford it any more and they want to do that from 1 July. Each of N's scripts for it last for 3 month's worth so we're about to collect a March - April lot, then an April - May lot, then a May - June lot.
Then he's got to go onto a powdered version which I'll have to mix up and give him. We've tried that one before and I know he hates the taste of the re-constituted drink.
So one support will be kicked out then and then in 2 months after that the appetite stimulant will be unfunded too.
Going to be interesting times in the next 5 months...
And in the mean time I have a child on 5 separate prescription items - a pill for every season...
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Tuesday, March 23, 2010
Wednesday, March 17, 2010
Waiting and Worried
Since I last blogged things have been moving on somewhat with N.
We've met the new psych, old one has handed over and moves are afoot to write to the GP and paed about N and his eating and where to from here.
I have asked for a copy of the letter they are sending to the GP and paed - and just, as I'm writing this, have seen the letter. It sheets the concern back to me so same old same old - mum is worried, help mum not feel worried.
So a bit of work here for us to do to actually make sure someone helps the kid.
We have a paed appt for him on Monday so we will see what we will see - never really stops.
N is really the crunch kid at the moment, the other two seem to be holding fairly well on their own - thank heavens for small mercies!
Next week is going to be fun - 2 paed appointments, a psych appointment, an SLT appointment and another therapist appointment...and now I know for sure that N's appointment on Monday is going ahead I need to get him to the GP for a current weight and print out of the data to take to the paed.
And the fun never stops!
We've met the new psych, old one has handed over and moves are afoot to write to the GP and paed about N and his eating and where to from here.
I have asked for a copy of the letter they are sending to the GP and paed - and just, as I'm writing this, have seen the letter. It sheets the concern back to me so same old same old - mum is worried, help mum not feel worried.
So a bit of work here for us to do to actually make sure someone helps the kid.
We have a paed appt for him on Monday so we will see what we will see - never really stops.
N is really the crunch kid at the moment, the other two seem to be holding fairly well on their own - thank heavens for small mercies!
Next week is going to be fun - 2 paed appointments, a psych appointment, an SLT appointment and another therapist appointment...and now I know for sure that N's appointment on Monday is going ahead I need to get him to the GP for a current weight and print out of the data to take to the paed.
And the fun never stops!
Thursday, March 4, 2010
Impending doom - or here we go again...
Why do I feel like I been here before?
I didn't want to be here then and I certainly don't want to be here again.
Same junk different kid...
I could just sit and scream, I could throw a dozy of a two-year old tantrum - heaven only knows I've seen enough of those in my time, I could kick against an imaginary locked door in frustration.
But no, I'll have a wee cry, take a deep breath, plaster on another smile and jump back into the pool again.
Why?
Because I have to. There is no other choice. You can't give up, not on one of your kids and not on something as important as eating.
Yes, same junk, different kid.
I had thought we might have finally cracked a support network who actually knew something and might be able to help N. Thanks to a therapist working with W referring us on because of N's ADHD we got in to see a psych specialising in ADHD.
Initially it was help with behavioural aspects and while that was very welcome we all came very rapidly to the opinion that when N eats his behaviour is much more settled. When he DOESN'T he is scattered, hyperactive, oppositional and extremely difficult to manage. The overwrought and underfed tantrums can be dangerous to him and others around him. His unpredictable behaviour also poses a safety risk to him and those around him.
And so the psych started talking to another psych in the office, one who specialised in eating issues in kids.
Between the specialist eating experience and the specialist ADHD experience I thought we had the Dream Team in place. Maybe, just maybe I could think of my New Year's Resolution/hope of having both the younger two eating enough and properly to sustain themselves without supplements by year's end, actually happening!
But today that light appears to be yet another on-coming train.
Remember how many times this has happened over so many years and in so many different ways with all the kids.
The ADHD psych is leaving - in 3 weeks.
We've only had our second session on eating with her today.
We'd had a number of other sessions with her and she meshed really well with our parenting outlook, N looks forward to her visits, and finally meeting someone who understood how Mr Million Miles an Hour actually works was simply magic - incredible and I've learnt a lot. Things she said, expressed and expected as outcomes or responses were just so perfectly 'N' it was like she was in his head.
She was going to talk to the paed and GP about baselines or growth and when do we look at supplemental options. She was prepared to be the go-between and keep all people on the right page.
And now we've lost it all.
She's referring us on, we're not totally out in the cold. She's going to do a full handover and we'll meet the new person at least once before she leaves. But the new person is a general psych, not an ADHD specialist.
And the new person works in a different office so not with the one who deals with feeding issues.
I would be seriously surprised - but delighted - if this new one was prepared to take on management with the varying people.
Our lovely psych recognises this isn't going to be a quick fix of a couple of sessions, that this is long term, on-going and we need continuing and consistent support. She is going to make sure this one comes to our home so we're not messing round all the time.
But the standard strategies haven't worked with N over many years and I seriously fear that without that combined specialist knowledge we're never going to get anywhere with N.
And the train draws closer - again.
Just to add to the sense of impending doom - the funding is being changed around N's high calorie supplement in July. The replacement product is one I know, through past efforts, that he won't drink.
Where is this train wreck heading?
I didn't want to be here then and I certainly don't want to be here again.
Same junk different kid...
I could just sit and scream, I could throw a dozy of a two-year old tantrum - heaven only knows I've seen enough of those in my time, I could kick against an imaginary locked door in frustration.
But no, I'll have a wee cry, take a deep breath, plaster on another smile and jump back into the pool again.
Why?
Because I have to. There is no other choice. You can't give up, not on one of your kids and not on something as important as eating.
Yes, same junk, different kid.
I had thought we might have finally cracked a support network who actually knew something and might be able to help N. Thanks to a therapist working with W referring us on because of N's ADHD we got in to see a psych specialising in ADHD.
Initially it was help with behavioural aspects and while that was very welcome we all came very rapidly to the opinion that when N eats his behaviour is much more settled. When he DOESN'T he is scattered, hyperactive, oppositional and extremely difficult to manage. The overwrought and underfed tantrums can be dangerous to him and others around him. His unpredictable behaviour also poses a safety risk to him and those around him.
And so the psych started talking to another psych in the office, one who specialised in eating issues in kids.
Between the specialist eating experience and the specialist ADHD experience I thought we had the Dream Team in place. Maybe, just maybe I could think of my New Year's Resolution/hope of having both the younger two eating enough and properly to sustain themselves without supplements by year's end, actually happening!
But today that light appears to be yet another on-coming train.
Remember how many times this has happened over so many years and in so many different ways with all the kids.
The ADHD psych is leaving - in 3 weeks.
We've only had our second session on eating with her today.
We'd had a number of other sessions with her and she meshed really well with our parenting outlook, N looks forward to her visits, and finally meeting someone who understood how Mr Million Miles an Hour actually works was simply magic - incredible and I've learnt a lot. Things she said, expressed and expected as outcomes or responses were just so perfectly 'N' it was like she was in his head.
She was going to talk to the paed and GP about baselines or growth and when do we look at supplemental options. She was prepared to be the go-between and keep all people on the right page.
And now we've lost it all.
She's referring us on, we're not totally out in the cold. She's going to do a full handover and we'll meet the new person at least once before she leaves. But the new person is a general psych, not an ADHD specialist.
And the new person works in a different office so not with the one who deals with feeding issues.
I would be seriously surprised - but delighted - if this new one was prepared to take on management with the varying people.
Our lovely psych recognises this isn't going to be a quick fix of a couple of sessions, that this is long term, on-going and we need continuing and consistent support. She is going to make sure this one comes to our home so we're not messing round all the time.
But the standard strategies haven't worked with N over many years and I seriously fear that without that combined specialist knowledge we're never going to get anywhere with N.
And the train draws closer - again.
Just to add to the sense of impending doom - the funding is being changed around N's high calorie supplement in July. The replacement product is one I know, through past efforts, that he won't drink.
Where is this train wreck heading?