Yup, all I can think of how we are expected to dance with our kids' futures, education and health.
It seems to be a total hokey tokey dance with the education system here in NZ.
Policy, disability rights, actual needs, schools, options within the system and internal procedure seems to entwine itself into a never ending and contradicting maze.
We 'fell into' homeschooling by necessity.
W's needs were such he was probably clinically depressed and certainly seriously contemplating suicide as an 8 year old because of the stresses and difficulties of coping in a mainstream school without supports - supports we had requested and the school had declined to supply - or even use supports we supplied ourselves.
Not prepared to be the mother of an 8 year old suicide victim, and having hit a brick wall with the school, I did the only option left to us and pulled him from school. Because he'd improved with a trial run at home the GP at the time didn't want to refer him to any mental health services - clearly the root cause was school and so it was an education issue.
The education system and the health system here are like cogs grinding in opposite directions even though children and their families need a clean and simple meshing for the best outcomes for the children.
I was aware at the time that pulling W from school and homeschooling him meant that he wasn't entitled to any supports from Special Education, therapies etc. At the time it was the least of our worries - and these had been denied by the school anyway so really seemed a moot point. This was his second school letting him down like this and as we had already discovered, if a school refuses to apply for funding there is nothing anyone can do about it - even for a kid with a diagnosed disability.
However - 5 1/2 years down the track we now discover that just because he hasn't improved as we had hoped, that testing points that his best educational setting is not compatible with a mainstream schooling setting, schools' autonomy continues to run rife and funding for children with mixed needs simply isn't sufficient W's options are surrounded with brick walls.
The policy - both that of Special Education and that of the National Disability Framework - states that people with disabilities should have equal rights to basics as compared to those without and this includes education. Special Education policy states that those needing special education supports have the right to the most appropriate educational setting for them to be successful.
And so, armed with the testing showing that mainstream school will not be the setting for W to be most successful we asked for an assessment for him to be enrolled into Correspondence for his secondary schooling. I can't teach him the range of subjects he needs at this level and he's entitled to an adequate education.
The first assessment was a total fiasco with relevant people not contacted, irrelevant people contacted, a report riddled with errors including a mis-representation of W's official diagnosis of Asperger's Syndrome. It resulted in a formal complaint from us which has not been upheld - despite their decision letter not addressing 3/4 of our concerns and the section regarding the mis-quote doesn't even make sense!
However they did concede to giving W a fresh assessment.
This assessment was yesterday - and very thorough - even including meeting with and assessing W which never happened before!
However we don't expect to get the approvals he needs as apparently, once you opt out of the system you stay out. It is apparently against policy to go to Correspondence from homeschooling. You can only go to it from school and on a school's recommendation.
W would not attract any funding help other than what a school decides to give from their discretionary funds and as already experienced there are many other demands on that money and a child who does not create difficulties in class is unlikely to get it and when a school decides not to help then no one can make them.
So we have no good choices here - we either make up his secondary schooling as we go along, pay for a curriculum which won't lead to a national qualification (although apparently NZ Universities do recognise it currently) or throw him back into school. As the first assessment also included significant time delays he would not be able to go to the most appropriate school for him as we live out of zone next year anyway.
Even if we could get him into the most appropriate school supports are dependent on the school's willingness to supply them and even then testing says this won't be the way for W to actually achieve to his potential. He will be spending all his energies coping rather than learning.
Once he is exhausted by coping he will deteriorate. W, being the kind of kid he is, will turn that in on himself rather becoming a problem for the school.
He already has a tendency to saying he is useless and worthless, he previously engaged in mild self-harming behaviour and is at risk for depression anyway. But none of that will be enough for a school to say they aren't managing him and that he needs to go to Correspondence. That will take some major problem.
The system is saying we actually have to leave him to sustain significant damage to his mental health, self-esteem and educational progress before they will help him - great point to be able to say 'told you so'!
Quite apart from the impossible situation this leaves W in it leaves me wondering - everyone says we have a world class education system here - really??
No wonder that we have around 20% of people leaving school with no qualifications, have such a high dis-engagement with education rate or why home-schooling is increasing these days. The rise is mostly made up of those with kids with mild or mixed special needs.
The problem is, while the issue is 'fixed' from the education system's view-point when these kids leave, our situation is going to become a persistent one as these children reach secondary and parents want the best for their children.
There is also no wonder that the employment rate for those with diagnosed Asperger's Syndrome apparently sits around 8 - 12% - and we're talking part time not full time employment!
Considering we have our 20% non-achieving tail, the rate of those diagnosed with ASD is increasing, as people saw from my post on World Prematurity Day the numbers of prem children with moderate learning differences is rising - what are the actual numbers of children not being well served by our 'world class' system?
The latest Government document on Special Education was entitled "Success for every Child"
- it'd be nice wouldn't it?
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Wednesday, December 14, 2011
Thursday, December 8, 2011
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...
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...
Tuesday, November 29, 2011
As hope fades
I'd thought of a post on being stuck in medical limbo - again - waiting for doctors to finally do something.
That's what I've been writing in my head for the last month anyway.
But just yesterday all hopes were dashed.
P has been saying for some time that he'd given up hope N will ever eat properly again.
He'd also been saying that the surgeon won't do anything when it came to the crunch.
I'd stayed optimistic - if I give up on N then there's no one believing in him, no one pushing forwards, trying, hoping, praying it'll work out in the end.
I'd also believed in the surgeon - he said he'd try a naso-gastric tube trial in September when we saw him, he'd called me at home twice to discuss where things were at, the hospital teacher had called me as well on his request, when N was in hospital for suspected appendicitis early in November we saw him then and as recently as 4 November he said he'd admit N.
We happen to see him socially as well and he'd chatted informally with us, happy and smiling.
I said to P that he's a straightforward, honest guy and he simply wouldn't behave like that if nothing was going to happen for N.
So we put our lives semi on hold. P pulled out of a Christmas concert with the prospect of N's hospital admission, I juggled round the kids' schoolwork and sorted out ways for the household and school work to run with several days out of action.
And nothing happened.
And nothing happened.
And nothing happened.
The paed asked us what was happening as he'd said to her he'd do this trial - we said we didn't know.
Finally I asked the GP to write a clinical account of how N was during his last retching/headache/vomiting/nausea episode since it was the first time she'd seen one and definitely there was no other cause for it other than his not eating and drinking. She said she'd do one better and ring the surgeon.
Our hopes raised.
And were dashed.
She called me back and said the surgeon has categorically told her he will not even do a trial never mind put a tube in. If N was on the 3rd centile and lethargic all the time then he'd consider it but the international studies said that while it might help it might make things worse and the risks of the surgery outweigh the benefits. He recommends seeing an educational psychologist. We also got the tired old story of time and puberty will make him want to eat.
And so there is no more hope.
N is on the 3rd centile for weight - and static so will naturally travel further away with time.
He doesn't have the stamina to do a full 3/4 hour swimming lesson.
He can't drink large volumes at a time - the surgeon says this is because of his nissen (the reflux surgery) working properly - and so needs smaller volumes frequently.
He has these episodes around once every 3-4 weeks. By my count of events recorded in his food diary he's had 39 acute days between January and end of November. That's not including the day each time it takes to claw him back from it, or the times it started late in the day or in the morning and I managed to get him to drink enough to ward it off. So it'd be easily 80 days a year affected by ill-health due to his eating.
Days he'd be unable to attend school.
The kid's bright but not that bright that he can do a year's school on only 3 out of 4 terms.
The paed has already agreed that the way things are he is unable to go to school anyway.
Puberty is largely affected by weight (see fact weight is static!) and he's showing no signs at nearly 11. It's quite likely he'd be late going into puberty anyway so by the time he's 14 or so the non-eating habit will have been going for 7 years. Real likely that a habit that well formed will just change miraculously by itself.
I'd love to see international studies dealing with N's unique cluster of issues - ADHD affected eating, appetite suppressant meds at the same time as eating causing pain, extensive reflux history impacting on eating when younger - and what they say about the use of any kind of supplementary feeding.
I have no concerns about his academic ability, never have had.
Only the impacts of not eating has on his behaviour and ability to learn.
Telling us to see an ed psych is about as much use as telling the parents of a child failing to learn because they are hungry and parents can't afford the food to see an ed psych.
We often smell ketones on his breath due to lack of calories and he's complaining he feels his heart skipping beats at times when he's not eating/drinking much. I hate to think what the long term health consequences are of this for N.
And so, we'll have to increase his Ensure volumes. He roughly needs 2000 cal a day and we've been supplementing to 1500 but his weight is static and everything else also says he needs more.
We haven't increased until now because drinking 2 litres of 'milkshake' a day will totally kill his residual desire to eat.
But we have no choices left now.
There is no hope now.
The surgeon said he would only consider a tube as a last resort - what else is there for us to do?
I still remain of the opinion that I can get him eating again if I have the right tools.
But I have just been denied that.
And so we have made a paed appointment for N.
Not to discuss what progress he's made or where to from here
No, the time for planning to get out of this mess has gone.
We are simply going to have to tell her where we are at - and give her the forms for N to do Correspondence School funded through Health.
All that hope, those dreams, the planning are gone.
There is no way forward, ladder out of the hole - just deeper into the abyss.
I feel betrayed - betrayed by the surgeon who didn't even have the courage to tell us to our faces, explain how his decisions can change so radically in 24 days when the clinical picture hasn't.
We did everything he asked - bloods, x-rays, endocrinologists, adolescent health specialist (total waste of time) and above all waited for things to improve.
He took a risk in T's care - and wrought something which was nothing short of a miracle - but won't even try for N.
Paeds, paed surgeons, GPs - they all get to sign off on the kid's care. We never get to sign off on the duty of care for the kids.
My beautiful, bright, bubbling boy, so social and engaging, who would thrive at school given the right supports and tools - cast to one side for what are incomprehensible reasons.
The fight is over and hope has gone.
That's what I've been writing in my head for the last month anyway.
But just yesterday all hopes were dashed.
P has been saying for some time that he'd given up hope N will ever eat properly again.
He'd also been saying that the surgeon won't do anything when it came to the crunch.
I'd stayed optimistic - if I give up on N then there's no one believing in him, no one pushing forwards, trying, hoping, praying it'll work out in the end.
I'd also believed in the surgeon - he said he'd try a naso-gastric tube trial in September when we saw him, he'd called me at home twice to discuss where things were at, the hospital teacher had called me as well on his request, when N was in hospital for suspected appendicitis early in November we saw him then and as recently as 4 November he said he'd admit N.
We happen to see him socially as well and he'd chatted informally with us, happy and smiling.
I said to P that he's a straightforward, honest guy and he simply wouldn't behave like that if nothing was going to happen for N.
So we put our lives semi on hold. P pulled out of a Christmas concert with the prospect of N's hospital admission, I juggled round the kids' schoolwork and sorted out ways for the household and school work to run with several days out of action.
And nothing happened.
And nothing happened.
And nothing happened.
The paed asked us what was happening as he'd said to her he'd do this trial - we said we didn't know.
Finally I asked the GP to write a clinical account of how N was during his last retching/headache/vomiting/nausea episode since it was the first time she'd seen one and definitely there was no other cause for it other than his not eating and drinking. She said she'd do one better and ring the surgeon.
Our hopes raised.
And were dashed.
She called me back and said the surgeon has categorically told her he will not even do a trial never mind put a tube in. If N was on the 3rd centile and lethargic all the time then he'd consider it but the international studies said that while it might help it might make things worse and the risks of the surgery outweigh the benefits. He recommends seeing an educational psychologist. We also got the tired old story of time and puberty will make him want to eat.
And so there is no more hope.
N is on the 3rd centile for weight - and static so will naturally travel further away with time.
He doesn't have the stamina to do a full 3/4 hour swimming lesson.
He can't drink large volumes at a time - the surgeon says this is because of his nissen (the reflux surgery) working properly - and so needs smaller volumes frequently.
He has these episodes around once every 3-4 weeks. By my count of events recorded in his food diary he's had 39 acute days between January and end of November. That's not including the day each time it takes to claw him back from it, or the times it started late in the day or in the morning and I managed to get him to drink enough to ward it off. So it'd be easily 80 days a year affected by ill-health due to his eating.
Days he'd be unable to attend school.
The kid's bright but not that bright that he can do a year's school on only 3 out of 4 terms.
The paed has already agreed that the way things are he is unable to go to school anyway.
Puberty is largely affected by weight (see fact weight is static!) and he's showing no signs at nearly 11. It's quite likely he'd be late going into puberty anyway so by the time he's 14 or so the non-eating habit will have been going for 7 years. Real likely that a habit that well formed will just change miraculously by itself.
I'd love to see international studies dealing with N's unique cluster of issues - ADHD affected eating, appetite suppressant meds at the same time as eating causing pain, extensive reflux history impacting on eating when younger - and what they say about the use of any kind of supplementary feeding.
I have no concerns about his academic ability, never have had.
Only the impacts of not eating has on his behaviour and ability to learn.
Telling us to see an ed psych is about as much use as telling the parents of a child failing to learn because they are hungry and parents can't afford the food to see an ed psych.
We often smell ketones on his breath due to lack of calories and he's complaining he feels his heart skipping beats at times when he's not eating/drinking much. I hate to think what the long term health consequences are of this for N.
And so, we'll have to increase his Ensure volumes. He roughly needs 2000 cal a day and we've been supplementing to 1500 but his weight is static and everything else also says he needs more.
We haven't increased until now because drinking 2 litres of 'milkshake' a day will totally kill his residual desire to eat.
But we have no choices left now.
There is no hope now.
The surgeon said he would only consider a tube as a last resort - what else is there for us to do?
I still remain of the opinion that I can get him eating again if I have the right tools.
But I have just been denied that.
And so we have made a paed appointment for N.
Not to discuss what progress he's made or where to from here
No, the time for planning to get out of this mess has gone.
We are simply going to have to tell her where we are at - and give her the forms for N to do Correspondence School funded through Health.
All that hope, those dreams, the planning are gone.
There is no way forward, ladder out of the hole - just deeper into the abyss.
I feel betrayed - betrayed by the surgeon who didn't even have the courage to tell us to our faces, explain how his decisions can change so radically in 24 days when the clinical picture hasn't.
We did everything he asked - bloods, x-rays, endocrinologists, adolescent health specialist (total waste of time) and above all waited for things to improve.
He took a risk in T's care - and wrought something which was nothing short of a miracle - but won't even try for N.
Paeds, paed surgeons, GPs - they all get to sign off on the kid's care. We never get to sign off on the duty of care for the kids.
My beautiful, bright, bubbling boy, so social and engaging, who would thrive at school given the right supports and tools - cast to one side for what are incomprehensible reasons.
The fight is over and hope has gone.
Friday, November 25, 2011
All you need is....follow through!
Here in New Zealand we have our General Election tomorrow.
There are a lot of issues on the table for us all to consider and, of course, a lot of promises have been made by politicians.
But one thing which, it strikes me as having been a problem here for a very long time, is nowhere to be seen.
It stands at the heart of so many of the issues affecting the country, the systems, us all.
And that is - follow through.
There largely seems to be none at all and where it does chance to happen it's usually due to other factors forcing it to occur.
On a nationwide scale - it doesn't matter what side of the argument you are on with regard to National Standards (a new assessment tool here). The major, underpinning flaw is they funded the implementation so finally we (as parents) have a clearer picture of our children's achievement but not any remedial help for those identified as failing.
Follow through people??
They introduced a 'developmental' check for 4 and a bit year olds to try and identify issues before they started school. But the vast majority of 'assessors' are simply Plunket nurses picking up an extra string to their bow but, in my and anecdotal experience, many have very little knowledge on which to base their assessments eg the Plunket nurse who told me - and wrote in W's book - that he was meeting all milestones even though she also wrote down he was getting Early Intervention help at the time. He'd qualified for OT and physio help because he wasn't meeting milestones!
This system has been put into place as a crude screening tool and then concerns are referred on to experts - but the experts are under-funded anyway and thanks to the surge in possible referrals the wait is now around 18 months in our town. Since that'd take a kid to nearly 6 years old the whole 'before school' thing sort of gets lost... Where's the follow through?
We have a horrible record for child abuse in this country. I'm not sure of the current stats but we'd have over 100 kids die each year due to child abuse.
There was a case recently where our Child Protection people knew of issues with a family and were actually trying to remove a child from the family's 'care'. However, somewhere along the way they 'lost' the family and couldn't find the kid. They couldn't find it, until it turned up in a hospital with brain injuries and later died.
Where's the follow through on that?
Some people will know my vehement view that if we are going to have good neonatal care in this country then we also have to have extra funding for Early Intervention, special education, extra health needs and so on. If we are going to spend the money on the babies then we have to follow through and spend the money on the children they grow into. Hopefully if we spend the money on the children they grow into then we won't need to follow through and spend so much money on the adults he children grow into.
This is particularly so for those moderately and mildly premature children who, with a smaller, less intenvsive or at least less prolonged hand can streak on past or round their roadblocks. These are the kids where there is never a debate about giving them the NICU care in the first place and so they, and their parents, always have to carry the can.
We had a discussion with the kids' surgeon about N and how his eating and formula volumes are a large part of what's holding him back from school. One of the things that was thrown about was that it's unethical to do something for the child just because another system won't be flexible enough for him.
Actually, I feel what's unethical is the fact that so much money was spent keeping his brain in a good state in the NICU, supporting him as a baby, keeping him alive when he wound up in the ICU at 6 months old, giving him some Early Intervention when he needed it and now we run into roadblocks trying to get him to school and a suitable education for that brain to use, grow, develop and actually do something with!
Again - follow through?
And on a much smaller scale - T was getting SLT when he was littler. Due to the vagaries of the system he had to have a hearing test, then go on a waiting list to be assessed to see if he'd qualify for SLT and if so then join the next waiting list to actually get therapy. So I duly did the hearing test - quite a mission it was too! Then I got a letter saying we hadn't shown up for the appointment! Since we'd been there for over an hour and seen two audiologists in the end I wrote a strongly worded letter to the hospital and asked for a copy of the results to be sent to me as well as the GP. If I didn't have the report when the SLT came then they wouldn't do the initial assessment. So I got the report just in the nick of time for T's assessment which I refused to miss because the hospital couldn't organise itself as we'd waited over 6 months to get to that point.
T qualified and 3 months later started therapy. The therapist left but did a good handover to the next one. She was often sick and then disappeared. We later got a letter saying she'd quit and as T had had over 6 months of therapy he would go to the bottom of the waiting list again. We rang and complained that actually he'd been on the books for 6 months but had only had about 6 sessions due to illnesses/cancelled appointments and had already been nearly 2 months without therapy and we didn't want him to go to the bottom of the list again. They checked their records and confirmed what we'd said and as soon as they appointed someone T re-started therapy.
But again it's the lack of follow through. It shouldn't have been up to the parent to keep records, keep on top of things and events and appointments. They have records too and they should have checked before sending out letter dumping kids.
Things are fragmented. I'm sure they are in every system really.
But follow through seems to be hugely lacking here - and would make the systems work so much better with very little extra effort. Those who are employed to keep track of the people ought to do it not just cross their fingers and hope for the best. The funding needs to be there for the systems to actually work - not just put half a process in and hope.
What this country needs - is follow through!
There are a lot of issues on the table for us all to consider and, of course, a lot of promises have been made by politicians.
But one thing which, it strikes me as having been a problem here for a very long time, is nowhere to be seen.
It stands at the heart of so many of the issues affecting the country, the systems, us all.
And that is - follow through.
There largely seems to be none at all and where it does chance to happen it's usually due to other factors forcing it to occur.
On a nationwide scale - it doesn't matter what side of the argument you are on with regard to National Standards (a new assessment tool here). The major, underpinning flaw is they funded the implementation so finally we (as parents) have a clearer picture of our children's achievement but not any remedial help for those identified as failing.
Follow through people??
They introduced a 'developmental' check for 4 and a bit year olds to try and identify issues before they started school. But the vast majority of 'assessors' are simply Plunket nurses picking up an extra string to their bow but, in my and anecdotal experience, many have very little knowledge on which to base their assessments eg the Plunket nurse who told me - and wrote in W's book - that he was meeting all milestones even though she also wrote down he was getting Early Intervention help at the time. He'd qualified for OT and physio help because he wasn't meeting milestones!
This system has been put into place as a crude screening tool and then concerns are referred on to experts - but the experts are under-funded anyway and thanks to the surge in possible referrals the wait is now around 18 months in our town. Since that'd take a kid to nearly 6 years old the whole 'before school' thing sort of gets lost... Where's the follow through?
We have a horrible record for child abuse in this country. I'm not sure of the current stats but we'd have over 100 kids die each year due to child abuse.
There was a case recently where our Child Protection people knew of issues with a family and were actually trying to remove a child from the family's 'care'. However, somewhere along the way they 'lost' the family and couldn't find the kid. They couldn't find it, until it turned up in a hospital with brain injuries and later died.
Where's the follow through on that?
Some people will know my vehement view that if we are going to have good neonatal care in this country then we also have to have extra funding for Early Intervention, special education, extra health needs and so on. If we are going to spend the money on the babies then we have to follow through and spend the money on the children they grow into. Hopefully if we spend the money on the children they grow into then we won't need to follow through and spend so much money on the adults he children grow into.
This is particularly so for those moderately and mildly premature children who, with a smaller, less intenvsive or at least less prolonged hand can streak on past or round their roadblocks. These are the kids where there is never a debate about giving them the NICU care in the first place and so they, and their parents, always have to carry the can.
We had a discussion with the kids' surgeon about N and how his eating and formula volumes are a large part of what's holding him back from school. One of the things that was thrown about was that it's unethical to do something for the child just because another system won't be flexible enough for him.
Actually, I feel what's unethical is the fact that so much money was spent keeping his brain in a good state in the NICU, supporting him as a baby, keeping him alive when he wound up in the ICU at 6 months old, giving him some Early Intervention when he needed it and now we run into roadblocks trying to get him to school and a suitable education for that brain to use, grow, develop and actually do something with!
Again - follow through?
And on a much smaller scale - T was getting SLT when he was littler. Due to the vagaries of the system he had to have a hearing test, then go on a waiting list to be assessed to see if he'd qualify for SLT and if so then join the next waiting list to actually get therapy. So I duly did the hearing test - quite a mission it was too! Then I got a letter saying we hadn't shown up for the appointment! Since we'd been there for over an hour and seen two audiologists in the end I wrote a strongly worded letter to the hospital and asked for a copy of the results to be sent to me as well as the GP. If I didn't have the report when the SLT came then they wouldn't do the initial assessment. So I got the report just in the nick of time for T's assessment which I refused to miss because the hospital couldn't organise itself as we'd waited over 6 months to get to that point.
T qualified and 3 months later started therapy. The therapist left but did a good handover to the next one. She was often sick and then disappeared. We later got a letter saying she'd quit and as T had had over 6 months of therapy he would go to the bottom of the waiting list again. We rang and complained that actually he'd been on the books for 6 months but had only had about 6 sessions due to illnesses/cancelled appointments and had already been nearly 2 months without therapy and we didn't want him to go to the bottom of the list again. They checked their records and confirmed what we'd said and as soon as they appointed someone T re-started therapy.
But again it's the lack of follow through. It shouldn't have been up to the parent to keep records, keep on top of things and events and appointments. They have records too and they should have checked before sending out letter dumping kids.
Things are fragmented. I'm sure they are in every system really.
But follow through seems to be hugely lacking here - and would make the systems work so much better with very little extra effort. Those who are employed to keep track of the people ought to do it not just cross their fingers and hope for the best. The funding needs to be there for the systems to actually work - not just put half a process in and hope.
What this country needs - is follow through!
Sunday, November 13, 2011
"Just a cold"
I dream of that day arriving - the day when a cold is 'just a cold'.
It's been about 13 years since I didn't regard the onset of a cold for one of the kids with dread.
My last post was all about long term fall out of being a late pre-term child. That was developmental stuff which has such a far reaching effect through their lives.
But there's another spanner my guys, and many other prem kids like to throw into the works, especially when they are working hard to thrive.
When they get sick they fall fast and hard.
When the boys were all younger a cold meant not just a nasty case of snuffles but usually croup, chest and ear infections, antibiotics, reflux flare up and the resulting weight loss which usually meant about 3 months hard work to get them back to where they were pre-cold.
Things aren't quite so bad these days - for a starter thanks to the wonders of surgery none of them reflux any more!
Whenever N gets sick his eating goes to hell in a handcart and if he's already going through one of his extreme non-eating binges then it happens really fast. Last time T got sick we were lucky to keep him out of hospital and it was really only thanks to his gastrostomy tube and feeding pump that we were able to keep it running really slowly and almost constantly and so kept him hydrated. Big achievement that time as I kept the weight loss contained to only half a kg!
T's doing really well lately and so you can imagine my dismay when he started to sound snuffly recently.
Normally I immediately swing in supportive measures - increase feeds, decongestant meds, pain relief, coaxing tempting titbits of food etc to try and head off the worst.
But this time I wanted to see what his body could do for itself. We're making progress towards weaning off the tube and a major factor in that is being able to cope with bugs without needing extra tube feeds.
So the first day he seemed okay, just congested but happy enough but by that night we were up with him retching due to all the mucus in his system.
Even though none of the kids can actually vomit properly any more after their reflux surgery there's nothing quite like that distinctive retch in the dark of the night to get a parent running a sub whatever second sprint to a kid's room!
T's lucky in a warped way, with his tube we can vent the air out of his tummy which is making him feel horrible - and along with it a certain amount of the mucus he's swallowed can be removed.
So we fairly quickly settled him and went back to bed.
The next night we were up again - to the dreaded sounds of croup. The poor kid was working reasonably hard to catch his breath between coughing and crouping and wouldn't lie down. But the good old trick of extra pillows and lots of calming reassurance worked and he eventually settled and went back to sleep after a round of cold meds and some ibuprophen. I was thrown back into the "Does he need help? What supportive measures do I put in now since he's not holding his own? Why can't this be 'just a cold' for once?" dilemma.
Apart from the fact that W complained he could hear T coming down the hallway that morning as his breathing was so loud he did seem to be managing that day.
The biggest problem with croup in a tubie is that all the pressure from the tummy muscles being used in breathing can actually send the feed backwards - and on occasion with T he's been bad enough to be triggering alarms on the pump because it reads the backwards flow as a blockage!
But he was still eating and drinking reasonably so I decided it was time to play chicken with the cold bug.
4 days into the 'cold' he was still running temps, sleeping at times and propped up on cold and other meds but nothing prescribed, no trip to a doctor and no increased feeds.
He saw his paed on day 6 for a routine check and she declared his chest clear so all the gunk has to be restricted to his nose. His weight was also static but he had been weighed only 2 weeks prior.
We're now around the 9 day mark on this cold. He's still really congested, mood's a bit fragile but through all of this we've scored some firsts -
- He didn't need to see a doc specifically for any effects of this bug.
- He hasn't needed antibiotics at all - he often gets a secondary infection round his tube site when he gets sick but that hasn't happened either!
- He hasn't significantly dropped off in his eating or drinking - this is a major first!
- and because of the continued drinking and eating we haven't had to increase his feeds at all.
- while he hasn't gained weight he hasn't lost any during this bug either - a major major first!!
So while he's still sick, got sicker than you'd expect from a 6 1/2 year old with 'just a cold' he's come a long way and made some major strides - one day, maybe, we really will have 'just a cold' in the household!
But in the meantime, this is another example of why people sharing bugs drive me crazy. It may well be just a cold to your kid but we're at day 10 and counting with a kid who is still unwell. People blow off the effects of a common illness but to kids already struggling it can really tip them over the edge.
So spare a thought next time you are coughing away - do others really need that bug - and do you know exactly who you might be spreading it to?
It won't be just the kid who gets it either - kids are generous...I 'm coming out the end of it too!
It's been about 13 years since I didn't regard the onset of a cold for one of the kids with dread.
My last post was all about long term fall out of being a late pre-term child. That was developmental stuff which has such a far reaching effect through their lives.
But there's another spanner my guys, and many other prem kids like to throw into the works, especially when they are working hard to thrive.
When they get sick they fall fast and hard.
When the boys were all younger a cold meant not just a nasty case of snuffles but usually croup, chest and ear infections, antibiotics, reflux flare up and the resulting weight loss which usually meant about 3 months hard work to get them back to where they were pre-cold.
Things aren't quite so bad these days - for a starter thanks to the wonders of surgery none of them reflux any more!
Whenever N gets sick his eating goes to hell in a handcart and if he's already going through one of his extreme non-eating binges then it happens really fast. Last time T got sick we were lucky to keep him out of hospital and it was really only thanks to his gastrostomy tube and feeding pump that we were able to keep it running really slowly and almost constantly and so kept him hydrated. Big achievement that time as I kept the weight loss contained to only half a kg!
T's doing really well lately and so you can imagine my dismay when he started to sound snuffly recently.
Normally I immediately swing in supportive measures - increase feeds, decongestant meds, pain relief, coaxing tempting titbits of food etc to try and head off the worst.
But this time I wanted to see what his body could do for itself. We're making progress towards weaning off the tube and a major factor in that is being able to cope with bugs without needing extra tube feeds.
So the first day he seemed okay, just congested but happy enough but by that night we were up with him retching due to all the mucus in his system.
Even though none of the kids can actually vomit properly any more after their reflux surgery there's nothing quite like that distinctive retch in the dark of the night to get a parent running a sub whatever second sprint to a kid's room!
T's lucky in a warped way, with his tube we can vent the air out of his tummy which is making him feel horrible - and along with it a certain amount of the mucus he's swallowed can be removed.
So we fairly quickly settled him and went back to bed.
The next night we were up again - to the dreaded sounds of croup. The poor kid was working reasonably hard to catch his breath between coughing and crouping and wouldn't lie down. But the good old trick of extra pillows and lots of calming reassurance worked and he eventually settled and went back to sleep after a round of cold meds and some ibuprophen. I was thrown back into the "Does he need help? What supportive measures do I put in now since he's not holding his own? Why can't this be 'just a cold' for once?" dilemma.
Apart from the fact that W complained he could hear T coming down the hallway that morning as his breathing was so loud he did seem to be managing that day.
The biggest problem with croup in a tubie is that all the pressure from the tummy muscles being used in breathing can actually send the feed backwards - and on occasion with T he's been bad enough to be triggering alarms on the pump because it reads the backwards flow as a blockage!
But he was still eating and drinking reasonably so I decided it was time to play chicken with the cold bug.
4 days into the 'cold' he was still running temps, sleeping at times and propped up on cold and other meds but nothing prescribed, no trip to a doctor and no increased feeds.
He saw his paed on day 6 for a routine check and she declared his chest clear so all the gunk has to be restricted to his nose. His weight was also static but he had been weighed only 2 weeks prior.
We're now around the 9 day mark on this cold. He's still really congested, mood's a bit fragile but through all of this we've scored some firsts -
- He didn't need to see a doc specifically for any effects of this bug.
- He hasn't needed antibiotics at all - he often gets a secondary infection round his tube site when he gets sick but that hasn't happened either!
- He hasn't significantly dropped off in his eating or drinking - this is a major first!
- and because of the continued drinking and eating we haven't had to increase his feeds at all.
- while he hasn't gained weight he hasn't lost any during this bug either - a major major first!!
So while he's still sick, got sicker than you'd expect from a 6 1/2 year old with 'just a cold' he's come a long way and made some major strides - one day, maybe, we really will have 'just a cold' in the household!
But in the meantime, this is another example of why people sharing bugs drive me crazy. It may well be just a cold to your kid but we're at day 10 and counting with a kid who is still unwell. People blow off the effects of a common illness but to kids already struggling it can really tip them over the edge.
So spare a thought next time you are coughing away - do others really need that bug - and do you know exactly who you might be spreading it to?
It won't be just the kid who gets it either - kids are generous...I 'm coming out the end of it too!
Saturday, November 12, 2011
A Month for every Cause
It seems these days it's hard to find a month which isn't awareness month for something, usually they double, triple and quadruple up.
I remember a time when it was unusual to have an awareness month for anything and it really meant something.
Some conditions don't have big international organisations to co-ordinate World blah Day, week or month.
And so they get lost in the wash of Breast Cancer Awareness, things for prostate cancer, even arthritis or blindness. The competition for a ribbon colour has gone crazy as well - different shades of blue for different conditions for instance.
There is one awareness month which largely relies on word of mouth. It doesn't have an international organisation, it doesn't have a snazzy ribbon you can wear with pride, it doesn't sell specially coloured everyday objects in the supermarket to fund raise for research, support or awareness.
I don't know if we even mark it here or if it's much more of an American thing but, in the US at least, November is Prematurity Awareness Month. Unofficially purple has become the colour for prematurity. There isn't a ribbon as such but a number of people have a specially made pendant with a heart shape on it. It's the Preemie Purple Heart. It's not a New Zealand symbolism that we come to easily and is very militaristic. Of course, here in New Zealand we also don't award Purple Hearts as the American military do. They award it for bravery and injuries received.
While it's not our imagery here it's incredibly appropriate.
Prematurity leaves babies fighting for survival.
Prematurity leaves babies fighting way beyond their birth and infancy.
And Prematurity leaves scars, battle wounds if you will.
Sometimes those scars are visible surgical scars, other times it's minute brain damage, tiny changes which play havoc with their development, some times it's the re-wiring of the sensory system or damage to the child's lungs which they carry for ever. None of those can be seen by the naked eye but they are there nonetheless.
Prematurity is a common and wide-ranging issue. The best stats I could find say that globally between 10 -12% of all births are pre-term - that is before 37 completed weeks of pregnancy.
For New Zealand - we're doing better than the global average - we have between 6 - 8 % of all births each year are pre-term. We are also ahead of the pack generally in terms of survival rates as well.
But it has to be remembered that even at the 32 - 34 weeks gestational age the survival rate is around 95%.
Of course that's variable up or down depending on all sorts of things - complications in the pregnancy, size of the baby, complications in delivery and so on. But the fact remains that around 5% of babies born 6-8 weeks early won't come home with their parents.
And the gestational age where we've seeing the biggest rise in premature births is the 32 - 36 weeker bracket.
There's a lot of evidence and information out there about the battles, disabilities and difficulties micro and even a little later prem babies have. It's not been interesting enough until relatively recently to research the effects of prematurity on moderately and late pre-term babies.
We were all told to take them home and treat them like a full termer, catch up by 2 years old, no lasting effects and so on.
The evidence is mounting that no prematurity is really benign - some kids are simply lucky. Some of those 'lucky' kids actually have damage they simply managed to function round and no one would know it was there until tests were done for some completely different reason.
But here are some stats I've found on the 32 - 36 weeker cohort. Much of this has come from research done in the last few years at National Women's Hospital in Auckland so it's pretty up to date - and New Zealand relevant.
If you are new to the prem baby/child game then think first before you read this.
If you have a late pre-term baby/child think how you are placed first before reading this.
If all you know about prem babies is that they are cute miniatures of full term babies (as I did, once a blissful moon ago) then please do read on!
Prematurity is not an excuse - it's a reason.
32 to 36 weekers (and that's measured to 36 weeks and 6 days) are 3 times more likely than full termers to have CP diagnosed by aged of 5 1/2 years.
They are also 3 times more likely to have a developmental delay diagnosed by 5 1/2 years.
They are 1.6 times more likely to have an intellectual disability.
They are 5 times more likely to have ADHD.
Their maths and reading scores as assessed by teachers is worse than full termers at Year 2 level.
Their participation in Special Education supports is higher in early levels of school.
They are 1.5 times more likely to be blind, deaf or have a seizure disorder.
They have decreased IQ scores.
Schizophrenia, psychological developmental disorder, behavioural and emotional problems are more common - in fact 19 - 21% of 34 - 36 weekers had clinically significant behaviour problems diagnosed by 8 years old. This statistic is similar to both the 31 - 34 weeker cohort and the 25 - 30 weeker cohort.
It is double the statistic for full term children.
High blood pressure, high cholesterol and insulin resistance in late childhood/early teens is more likely in late pre-term children. This appears to be related to abnormal growth patterns in infancy.
The first two years of life are the prime catch up time for late pre-termers and yet they are two times more likely to be underweight, stunted in their growth or even suffer wasting.
What the researchers don't say is that particular stat is due to the huge numbers who have feeding problems - even beyond the typical prem baby issues with tiring, poor suck etc.
Reflux is endemic in the prem population which can lead to feeding problems, sensory issues can lead to gagging, texture issues, oral sensitivity and finally food aversion.
Again when the incidence of feeding problems in late pre-termers is looked at, if it persists beyond a few months old then it is often as severe, persistent, serious and needing as intensive treatment as it would for a micro-prem.
A large reason for these impacts is that their system is immature, unprepared for the sensory assaults of light, sound and being handled. But also a significant reason is that in those last 6 weeks of pregnancy critical brain development is taking place. Btween 34 and 40 weeks gestation the cortical volume of the brain increases by 50% and the cerebellar development increases by 25%. In late pre-term children there is evidence of the white matter of the brain being decreased in volume even without evidence of a brain injury so this important development is being disrupted by the premature birth.
That's why our kids are 'wired differently'.
Now all that sounds horribly depressing - and it is.
Our kids are never really out of the woods because with the high blood pressure etc they re at much higher risk of chronic health problems as adults. Some kids appear to skate through their pre-school and even early school years and then the organisational, the executive function demands increase and the skills just aren't there and things start to fall to pieces, leaving the parents wondering where they've gone wrong because they thought they'd escaped the evil clutches of prematurity.
But all is not lost.
Those who read this blog regularly know that despite it all my boys are doing fairly well in their schoolwork, they are happy, exploring and living life as best they can.
They have some huge challenges but with our support are rising to it.
The trick is - knowledge is power.
Knowing what the risk factors are and employing watchful waiting. Don't expect every part of the preemie alphabet soup to befall your child, but, if they start to show issues then jump for help sooner rather than later.
Know how to find support and make sure you get it.
It's a roller coaster ride with many twists and turns, raising a premature child - but remember, the highs are there right along with the lows and I find, knowing how deep the lows can be also makes the highs all the more sweeter.
I remember a time when it was unusual to have an awareness month for anything and it really meant something.
Some conditions don't have big international organisations to co-ordinate World blah Day, week or month.
And so they get lost in the wash of Breast Cancer Awareness, things for prostate cancer, even arthritis or blindness. The competition for a ribbon colour has gone crazy as well - different shades of blue for different conditions for instance.
There is one awareness month which largely relies on word of mouth. It doesn't have an international organisation, it doesn't have a snazzy ribbon you can wear with pride, it doesn't sell specially coloured everyday objects in the supermarket to fund raise for research, support or awareness.
I don't know if we even mark it here or if it's much more of an American thing but, in the US at least, November is Prematurity Awareness Month. Unofficially purple has become the colour for prematurity. There isn't a ribbon as such but a number of people have a specially made pendant with a heart shape on it. It's the Preemie Purple Heart. It's not a New Zealand symbolism that we come to easily and is very militaristic. Of course, here in New Zealand we also don't award Purple Hearts as the American military do. They award it for bravery and injuries received.
While it's not our imagery here it's incredibly appropriate.
Prematurity leaves babies fighting for survival.
Prematurity leaves babies fighting way beyond their birth and infancy.
And Prematurity leaves scars, battle wounds if you will.
Sometimes those scars are visible surgical scars, other times it's minute brain damage, tiny changes which play havoc with their development, some times it's the re-wiring of the sensory system or damage to the child's lungs which they carry for ever. None of those can be seen by the naked eye but they are there nonetheless.
Prematurity is a common and wide-ranging issue. The best stats I could find say that globally between 10 -12% of all births are pre-term - that is before 37 completed weeks of pregnancy.
For New Zealand - we're doing better than the global average - we have between 6 - 8 % of all births each year are pre-term. We are also ahead of the pack generally in terms of survival rates as well.
But it has to be remembered that even at the 32 - 34 weeks gestational age the survival rate is around 95%.
Of course that's variable up or down depending on all sorts of things - complications in the pregnancy, size of the baby, complications in delivery and so on. But the fact remains that around 5% of babies born 6-8 weeks early won't come home with their parents.
And the gestational age where we've seeing the biggest rise in premature births is the 32 - 36 weeker bracket.
There's a lot of evidence and information out there about the battles, disabilities and difficulties micro and even a little later prem babies have. It's not been interesting enough until relatively recently to research the effects of prematurity on moderately and late pre-term babies.
We were all told to take them home and treat them like a full termer, catch up by 2 years old, no lasting effects and so on.
The evidence is mounting that no prematurity is really benign - some kids are simply lucky. Some of those 'lucky' kids actually have damage they simply managed to function round and no one would know it was there until tests were done for some completely different reason.
But here are some stats I've found on the 32 - 36 weeker cohort. Much of this has come from research done in the last few years at National Women's Hospital in Auckland so it's pretty up to date - and New Zealand relevant.
If you are new to the prem baby/child game then think first before you read this.
If you have a late pre-term baby/child think how you are placed first before reading this.
If all you know about prem babies is that they are cute miniatures of full term babies (as I did, once a blissful moon ago) then please do read on!
Prematurity is not an excuse - it's a reason.
32 to 36 weekers (and that's measured to 36 weeks and 6 days) are 3 times more likely than full termers to have CP diagnosed by aged of 5 1/2 years.
They are also 3 times more likely to have a developmental delay diagnosed by 5 1/2 years.
They are 1.6 times more likely to have an intellectual disability.
They are 5 times more likely to have ADHD.
Their maths and reading scores as assessed by teachers is worse than full termers at Year 2 level.
Their participation in Special Education supports is higher in early levels of school.
They are 1.5 times more likely to be blind, deaf or have a seizure disorder.
They have decreased IQ scores.
Schizophrenia, psychological developmental disorder, behavioural and emotional problems are more common - in fact 19 - 21% of 34 - 36 weekers had clinically significant behaviour problems diagnosed by 8 years old. This statistic is similar to both the 31 - 34 weeker cohort and the 25 - 30 weeker cohort.
It is double the statistic for full term children.
High blood pressure, high cholesterol and insulin resistance in late childhood/early teens is more likely in late pre-term children. This appears to be related to abnormal growth patterns in infancy.
The first two years of life are the prime catch up time for late pre-termers and yet they are two times more likely to be underweight, stunted in their growth or even suffer wasting.
What the researchers don't say is that particular stat is due to the huge numbers who have feeding problems - even beyond the typical prem baby issues with tiring, poor suck etc.
Reflux is endemic in the prem population which can lead to feeding problems, sensory issues can lead to gagging, texture issues, oral sensitivity and finally food aversion.
Again when the incidence of feeding problems in late pre-termers is looked at, if it persists beyond a few months old then it is often as severe, persistent, serious and needing as intensive treatment as it would for a micro-prem.
A large reason for these impacts is that their system is immature, unprepared for the sensory assaults of light, sound and being handled. But also a significant reason is that in those last 6 weeks of pregnancy critical brain development is taking place. Btween 34 and 40 weeks gestation the cortical volume of the brain increases by 50% and the cerebellar development increases by 25%. In late pre-term children there is evidence of the white matter of the brain being decreased in volume even without evidence of a brain injury so this important development is being disrupted by the premature birth.
That's why our kids are 'wired differently'.
Now all that sounds horribly depressing - and it is.
Our kids are never really out of the woods because with the high blood pressure etc they re at much higher risk of chronic health problems as adults. Some kids appear to skate through their pre-school and even early school years and then the organisational, the executive function demands increase and the skills just aren't there and things start to fall to pieces, leaving the parents wondering where they've gone wrong because they thought they'd escaped the evil clutches of prematurity.
But all is not lost.
Those who read this blog regularly know that despite it all my boys are doing fairly well in their schoolwork, they are happy, exploring and living life as best they can.
They have some huge challenges but with our support are rising to it.
The trick is - knowledge is power.
Knowing what the risk factors are and employing watchful waiting. Don't expect every part of the preemie alphabet soup to befall your child, but, if they start to show issues then jump for help sooner rather than later.
Know how to find support and make sure you get it.
It's a roller coaster ride with many twists and turns, raising a premature child - but remember, the highs are there right along with the lows and I find, knowing how deep the lows can be also makes the highs all the more sweeter.
Friday, October 28, 2011
"Barring Disaster" or life is what happens when you are making other plans
Life changes a lot after you have kids - we all know friends we lost contact with after our lives changed with the advent of kids and they didn't have any. But parenting on the sharp end is more like an extreme sport - and so the gaps are bigger.
I often reply to invitations with "Love to come - barring disaster" and I'm sure people think I'm just a total recluse.
Actually I'm sure many have given up trying to make contact at all.
But the simple fact is that baby sitting is hard to find/impossible, stuff keeps going wrong at the last minute and actually I'm often just plain tired.
I'm often afraid if I actually escaped the house I'd simply fall asleep at the table.
Some days the reciprocal nature of normal conversation is beyond me.
Others talk about schools, play dates, running from event to event with the kids while my mind is running over things like - if T had 170 ml in a morning feed but only drank 40 ml in the afternoon that means he needs x extra mls on top of his 650ml overnight, um when am I getting to bed again and how fast dare I run it so I can get to bed no later than 1am?
Not too scintillating I'm sure you'll agree!
And that's when my mind's not doing the horrible realisation I haven't washed out the feed containers today because I got side-tracked so I'll have a stack to do and probably need sterilizing now or calculating when the younger two last had a weigh-in and I'd better book them in soon and when do I need to call the chemist to organise repeats.
T had his Nissen Fundoplication and gastrostomy placement in Feb '09. Since then his needs have sky rocketed.
As a result P and I have great difficulty getting out together without the kids. In fact I can count the times on the fingers of one hand - there have only been 4. And that's including my trip on my own to England for my sister's wedding.
I saw a brilliant blog post a while back - she's a mother of a special needs medically fragile kid and while Thomas isn't anywhere as high needs as her daughter is he's definitely had his moments!
The bit that really spoke to me was this -" But as much as I love my dear friends, it is a huge effort to get out and do something with them. Even just the smallest of outings. It involves much planning and scheduling. And it takes physical and mental effort and energy, and I really just don't have any to spare. When I am presented with a choice of "I could go get a pedicure with a friend, or I could go to bed an hour early" - I fully admit that I will choose the latter almost every time. Because even if I was not chronically sleep-deprived, when I get together with a friend, what is there to talk about? "
When I've had a week of 1 am bedtimes, juggling feeds and trips out to appointments, got N behaving like a twat during the day because he's not eating yet again and I had the choice of a night out or P doing the night feed for me and getting to bed early, ideally with the option of a sleep in in the morning - what am I going to choose?
"Oh, you'll feel so much better to get out and take a break" - not as much as I would after an early night!
"The world won't end if you aren't at home doing it all" - no but even P has difficulties on a regular basis getting T to let him hook him up for his feed and despite his best efforts he has other jobs to do so I get home to a trail of half done jobs which take a while to sort back out again.
I don't think I'm irreplaceable but more that often the work load I return to makes it feel like it's not worth the planning beforehand and the sort out afterwards.
But as the quote from the other blog said, it's the mental effort and energy too - and that is just being spent on getting through the day/night often.
When T came through his last surgery with a dramatic improvement I decided it was time to get a needs assessment done to see about respite time. It was a nice validation in a way because they said with the workload he incurs I qualify for 104 DAYS of carer respite time. That's at a time they are cutting back and that kind of allocation seems to be unheard of in special needs parent circles here.
Not like I can use it all - or find anyone to do the respite time for me - but it's nice to have the work recognised.
Our GP just the other day said she doesn't know how I do it all and she'd have checked herself into a institution long ago if it were her. The kids' paed has said that caring for these kids is more than a full time job and she has no idea how I do it and even a modicum of work.
I do it because they are my kids, because there is no other choice.
But the end result is pretty much chronic sleep deprivation which has lasted about 6 1/2 years now, endless paperwork, fights, tactical planning, appointments plus of course - just keeping the kids alive!
Having kids is tiring and busy.
So is running a household.
So is homeschooling.
But here's the reason why I'm so spent, why I'd love to come out with you, return your call, actually remember the things we were going to do - but just never get there.
I get up about 7am - not bad so far. Thankfully P's usually done some basic household chores by then because he gets up with T who wakes at some ungodly hour. We're still not sure when he wakes as he's always well and truly with it when he comes and stands beside P waiting for the alarm at 6am!
But by 9am I've spent - 35 minutes making up N's formula for the day and making him drink his first glassful;
- 20 odd minutes washing up T's feed containers, syringes and tubing from the night before and making his formula for the day and measuring it out;
I've also refereed at least 2 fights in the 30 mins N's been up because it takes time for his ADHD meds to kick in and he can't be medicated 24 hours a day.
That's about an hour of my 2 hours awake done for. That's in addition to sorting washing, making sure the kids eat, tidying up after breakfast, feeding and dressing myself etc - all the normal stuff.
By 10am I've spent - another 35 minutes supervising T's tube feed and quite possibly venting him at the end of the feed;
- between 5 and 10 minutes cleaning and applying cream if needed to T's tube site;
- another 15 mins cleaning feed containers, syringes and tubing again after the feed.
Venting usually means attaching an open syringe (a big plastic syringe but without the plunger, the pushy part, attached) to his extension tube and allowing air to come up and out of his tummy and relieving pressure. We didn't need to do that very often before but with the increased burping lately it makes him more comfortable.
If we have to do that then often a little stomach contents comes back up through the tubing and possibly into the syringe which has to be returned gently to his stomach and then all the equipment treated like it's been vomited on - as in effect it has been - and cleaned very carefully.
So that's about that whole hour between 9 and 10 gone.
In between I'm teaching the kids, sorting disagreements and trying to hang the washing without World War 7 billion breaking out because the kids are like any other self-respecting bunch of kids and if the teacher has left the room of course they'll do anything but their work!
Through the day at about 1 1/2 to 2 hourly intervals I spend about 30 mins trying to coax/remind/nag N into actually drinking a glassful of his formula. Sometimes he downs it without difficulty and it only takes a couple of minutes out of that 2 hour window. Other times, like today he drops it.
That results in an extensive dry up, stain management, spray the floor and spray with a different spray once it's dried effort. Milk based drinks in wool carpets are not a good mix.
These days I spend about 30 minutes in the afternoon luring T into drinking some formula in the afternoon.
It may sound like a long time but you have to remember that his morning feed plus clean-up takes at least 45 minutes so by getting him to drink it instead of tubing it I am winning on this one plus it's just another step closer to tube-free life.
Over the day I probably spend about 3 hours just getting N to drink his formula - never mind eat anything.
You'd think that at least the kids are old enough that bedtime would be simpler...
T needs help drying round his tube site after a shower in the evening and checking if he needs any cream, either for granulation (extra skin growth which leads to a bit of an ooze and so what we call 'the crusties') or for early signs of infection which is often caused by the moisture/ooze caused by the granulation.
So that accounts for another 5 minutes - usually around the build up to dinner time so thankfully now P works from home he pops up, deals to that and goes back to 'work'.
The med round the kids require before bed also takes time.
By the time you've warmed the feed, flushed the tube and hooked T up to his night feed, mixed N's med for constipation (caused by his lack of solid food and shonky diet) with juice and given him his night medicine there goes another 20 mins.
That's in addition to night chats, sorting beds, tucking them in and all the normal stuff that everyone else does.
Of course I do try to do the housework, cook the meals, bake for the family including allergen-friendly foods for T and all that normal stuff.
The older two do music lessons as well, W has soccer in season and the older two but now it's the younger two have swimming lessons so I do have a stint as a 'mum-bus' as well.
N's meds wear off coming up to 12 noon and again coming up to 3pm so in the gap of them wearing off and the next dose kicking in he does need watching more carefully - he comes up with the most hair-brained schemes anyway but when he's hyperactive and impulsive you just never know what's going to happen. If he's not eating then he has a hair-trigger temper too and certainly doesn't think through the consequences of shoving a sibling even if they are close to a ranch slider...
As I say he can't be medicated 24 hours a day...
But my day doesn't stop there.
My night stretches on and on -
If T's eaten a good meal and feeling very full then his feed start may be a little delayed or run more slowly,
If we've been out somewhere and so his feed starts late,
If things are running behind that evening and so he's late for bed,
If he hasn't drunk so much formula over the afternoon - these are all reasons why my night could easily shift from a 12:30am bedtime to a 1am bedtime.
Depending on how hard the day has been with 'persuading' N to drink or how well he's been eating and so behaving I can find it hard to sleep anyway when I do finally tumble into bed.
Even if I get to bed by 12:30 it's often 1 am before I actually sleep. If getting to bed is 1am then it might be a bit quicker to sleep but that varies.
And so I finally get to rest and it seems all too soon that T arrives by my bedside (if I'm lucky enough to sleep that long) at 7am to tell me "It's up time Mummy!"
Some days, especially in winter, when I draw the curtains round the house to keep the warmth in, the pull of a bed in the semi-gloom is almost irresistible.
There are days when my eyes feel gritty because I'm tired - by about lunchtime.
By Friday I'm almost certainly in that state.
All of us who are parents remember that awful state of sleep deprivation with a newborn where you find you are unloading the dishwasher and putting the clean dishes in the fridge, when you drive somewhere and you only vaguely remember the trip, when you are sure you are actually micro-napping and missed something a kid said only, that's okay because if it's N he'll tell you another 10 times anyway.
I hang out for my Friday nights when P often does T's feed for me and whenever possible childwrangles on Sat morning so I get to sleep in. Some days that's even 9am!
Often but not always P does one of T's feed mid week for me too but that depends on rehearsal schedules and general tiredness of us both. There's no point in us both being zombies - and he has to earn the money!
So if I forget to return your call, find I'm just too tired to go out, have some disaster befall us, don't quite get to Facebook/email that day or week (because in the fog I've forgotten I even needed to send the email until I'm dropping off around 1am!) then it's not personal.
Heck I've been meaning to call T's Community nurse about a spare feeding tube for the past month!
Email actually works for me as does the internet.
It's my lifeline to the rest of the world and it's waiting whatever hour of the day or night.
But whatever happens, please don't give up on me totally.
Please don't stop inviting me to things.
It does help to know there are people out there, with other lives and in another world I look at and hope to re-join someday.
But do bear with me - this has to improve some day!
And so, I will post this and go and do some of those jobs which don't get done during the daylight hours as I have a good hour at least before bed tonight - T was full of air after a good dinner...
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