Well, today was supposed to be the rush, rush day with T seeing both the speech therapist who is going to work with his eating, and getting the biopsy results from the surgeon.
However....we have a junior doctors' strike today and tomorrow and I got the call from the surgeon's office yesterday to put off T's appointment until next week - I guess it's all hands on deck!
I don't mind really because I was going to have to watch the clock carefully and this way I could make sure we got basic info right. The therapist was really good and thorough. She said that kids who have things like reflux which make feeding unpleasant often learn to self-limit eating and won't increase volumes.
T is apparently eating a good range of textures and his mechanics are fine - it's just the volumes.
We really need to sort out his reflux and then she sees a definate need and real role for her after that. She's going to talk to her seniors about T's feeding post op and the pros and cons of a feeding tube for a kid like Thomas. She said she'd get back to me in a few days and that she'd write a detailed report on T and include a plan for him. She's going to talk to the dietician too and make sure everyone gets a copy of the report. I had my list of contact details for everyone involved with T so she can easily circulate everything. I also gave her a copy of the sheet with our concerns for T. She took photocopies of all of this month's food diary as well.
She did say I was already doing everything she'd recommend I do - including getting him involved in cooking (not that he eats it afterwards!) and that he is still fairly positive about food which shows how well we've done over the past 3 years. She also laughed at the surgeon's idea that once we operate he's just going to start eating - not a chance! Once we've fixed his reflux we've then got a long road of trying to fix his attitude to eating and volumes.
But I feel like we might get somewhere finally with T's eating - which is nice since he's eaten stuff all since Friday!
Eleanor.
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Showing posts with label reflux. Show all posts
Showing posts with label reflux. Show all posts
Tuesday, April 22, 2008
Thursday, March 27, 2008
Getting to the heart of the matter?
So the day dawned bright and beautiful - and we spent a lot of it inside!
W has been having dizzy spells accompanied by heart palpitations for a while now and so we were referred to the cardiologist. This is a new specialist for us - we've 'done' paediatricians, audiologists, speech therapists, occupational specialists, developmental paediatrician, developmental therapists , psychologists/psychiatrists, orthopaedics, optometrists/ophthalmologist, behavioural intervention workers and dietitians galore - but not cardiology before!
He did an ECG, an echo cardiogram and a stress echo - more ultrasound after treadmill.
End result - essentially healthy heart but something is going on. I hate to think how much all of that is going to cost us - thank heavens for health insurance!
So the next time he has an episode I have to take his pulse and record the rate. We also have to rush him to the hospital if we're close enough and get an ECG done. He needs one done during an episode for the cardio to know what's happening. The other possibility is to take him in to the private hospital and get an event monitor to attach to him so that he can wear that for about 2 weeks and hopefully have another episode while he's wearing it.
But the wonderful news is that he doesn't believe it's anything life threatening. I knew we weren't going to get answers today really as the episodes seem random with nothing in particular triggering them - so we'd have to be really incredibly lucky to catch one while we were there! But it would have been nice to have had some kind of answer rather than now having to wave a vague butterfly net at the problem.
W's happy - he was worried he wouldn't be allowed to play soccer - first practice is this Sunday!
The doctor did seem to think that the cisapride W was on for nearly 2 years for his reflux wouldn't have any effect - but he also said it didn't have any cardio effects at all - when it's know to extend the QT sequence. So I'll have to keep researching because the last thing we need is to be creating a time bomb in T!
And so we're in a holding pattern for W, it's back to the battle front with T - time next week to chase the GP over the formula, antacid and surgery for T. The hospital we were at today is where N had his surgery and where T will have his. I watched as they wheeled someone past us all dressed up for theatre and I could see T's tiny body in my mind's eye, lying on one of those huge beds...so not looking forward to this.
And so we keep trucking onwards,
Eleanor.
W has been having dizzy spells accompanied by heart palpitations for a while now and so we were referred to the cardiologist. This is a new specialist for us - we've 'done' paediatricians, audiologists, speech therapists, occupational specialists, developmental paediatrician, developmental therapists , psychologists/psychiatrists, orthopaedics, optometrists/ophthalmologist, behavioural intervention workers and dietitians galore - but not cardiology before!
He did an ECG, an echo cardiogram and a stress echo - more ultrasound after treadmill.
End result - essentially healthy heart but something is going on. I hate to think how much all of that is going to cost us - thank heavens for health insurance!
So the next time he has an episode I have to take his pulse and record the rate. We also have to rush him to the hospital if we're close enough and get an ECG done. He needs one done during an episode for the cardio to know what's happening. The other possibility is to take him in to the private hospital and get an event monitor to attach to him so that he can wear that for about 2 weeks and hopefully have another episode while he's wearing it.
But the wonderful news is that he doesn't believe it's anything life threatening. I knew we weren't going to get answers today really as the episodes seem random with nothing in particular triggering them - so we'd have to be really incredibly lucky to catch one while we were there! But it would have been nice to have had some kind of answer rather than now having to wave a vague butterfly net at the problem.
W's happy - he was worried he wouldn't be allowed to play soccer - first practice is this Sunday!
The doctor did seem to think that the cisapride W was on for nearly 2 years for his reflux wouldn't have any effect - but he also said it didn't have any cardio effects at all - when it's know to extend the QT sequence. So I'll have to keep researching because the last thing we need is to be creating a time bomb in T!
And so we're in a holding pattern for W, it's back to the battle front with T - time next week to chase the GP over the formula, antacid and surgery for T. The hospital we were at today is where N had his surgery and where T will have his. I watched as they wheeled someone past us all dressed up for theatre and I could see T's tiny body in my mind's eye, lying on one of those huge beds...so not looking forward to this.
And so we keep trucking onwards,
Eleanor.
Tuesday, March 18, 2008
Just Starting out
So here I am!
I've tried to set up a blog elsewhere but something's gone wrong so I figured if others can do this then so can I!
Hopefully I'm going to find time to blog fairly regularly...but typical of life with my prem kids, setting up this blog was interrupted by a phone call with T's dietitian!
Who am I?
I'm a full time mother - truly full time with this lot!
I homeschool, largely due to the kids not getting their needs met in our wonderful educational system here in New Zealand, but also due to bullying problems - which seems to be a universal problem. But I have found that the homeschool lifestyle is good - so much less stressful than dealing with school crap everyday!
I also have a little company called Little Tom - www.littletom.co.nz which sells properly sized clothing for premature and small new born babies.
I have 3 wonderful boys - W aged 9 and a half, N aged 7 and T aged nearly 3.
I also have a great and supportive husband - P. He does hugely long hours at work and sings as a paying hobby so often it's just the kids and me 24/7 or very nearly.
Apart from the obvious reasons to blog I decided to do this because my kids are the 'invisible preemies' or prems. They are 'late' prems. Still prems and they still struggle, just in different ways than say a 24 weeker but struggle none the less. They get ignored and forgotten in research, by doctors, by teachers (even though it has been shown that kids born even as late as 36 gestation are hugely more likely to have reading, writing, maths and fine motor skill problems and delays). My boys will carry their prematurity through life with them just as much as any other premature child.
W was born at 33 weeks gestation and weighing 3lb 14 oz or 1795g. He got through the NICU okay but once home the shit hit the fan. We dealt with reflux, failure to thrive (FTT), food aversions, apnoea episodes (where he stopped breathing in his sleep), developmental delays and eventually a diagnosis of Asperger's Syndrome - a form of high functioning autism.
There is no family history of Autistic Spectrum Disorders and the psychiatrist who diagnosed him said he had seen this more and more often in kids who were born prematurely, especially when the birth was difficult. W was delivered by emergency caesarian section due to my pre-eclampsia. He was deprived oxygen for a short period around his birth and didn't breathe on his own for a minute and a half. So who knows what actually happened to him...
They told my husband that they weren't sure he was going to make it through his first 24 hours but he can't remember why and I was too ill to be told - or so they decided anyway.
He's a wonderful kid these days anyway!
N was born at 36 weeks and 3 days, again an emergency caesarian section due to my pre-eclampsia and weighed 5lb 12 oz or 2620g. He had only 3 days in the NICU as he had respiratory problems and needed CPAP for a couple of days. He then came to me in the ward and we went home all together! N also dealt with severe reflux, feeding problems, FTT and some developmental delays. He seemed to get through it all but middle of last year he was diagnosed with ADHD and is now on Ritalin. This has made a massive difference to all of us - and again kids born prematurely, even as late as 36 weeks, have a 10 fold increased risk of ADHD - and again we have no family history. N also had a Nissen Fundoplication in October last year to finally deal with his on going reflux.
N is also a wonderful kid if a little challenging at times!
T was also born at 36 weeks - exactly, again and emergency caesarian section due to my pre-eclampsia. He weighed 5lb 11 oz or 2580g. This time I managed to not have a baby in the NICU and he stayed with me all the way through. T has struggled with feeding and weight gain pretty much ever since birth due to reflux. I was convinced he was refluxing at a couple of days old although told all prems reflux and not to wish it into reality - typical pat on the head to a postnatal mother. Never mind all my experience with reflux and the fact that this was my 3rd child and my 3rd preemie!
At 3 months old T got horribly thin and wound up needed nasogastric tube feeding. After 11 days in hospital he came home - plus tube. We managed tube feeding at home for about 3 weeks before he seemed to be doing better.
Due to some research and challenging on my part T's cow's milk protein allergy was picked up around 18 months old - and we discovered an allergy to soy at the same time. So the poor kid can't have any dairy products - or any soy! A huge culinary challenge.
T is now nearly 3 and still dealing with allergy problems and terrible reflux. He's still on meds and still underweight. We are battling on a daily basis to get him to eat anything much at all. He's now just hanging on the 3rd centile for his age, having dropped down the charts all year.
At the moment we have a dietitian, paediatrician, paediatric surgeon and GP involved with his care. We are waiting for 2 different lots of speech therapists at the moment. One lot to work with him on his pretty delayed speech and another lot to work with him on feeding issues.
But feeding therapy is going to have to wait until after we get T through surgery for his reflux as well. It appears, especially after having talked to the dietitian again today, that he is going to need to have a feeding tube surgically implanted after his nissen.
That's a thought which scares me witless and makes me feel like I've failed my child. But realistically, with developmental delays, hugely difficult feeding, all the learnt behaviour from reflux and his already low weight, it'd be irresponsible to go into his surgery without that kind of option and I actually will be failing T if I didn't take all steps I could to ensure adequate nutrition. His diet right now is horribly deficient - the dietitian says that if he weren't on formula he'd be suffering from malnutrition!
He's also a surprisingly happy and fun kid despite all the problems.
So that's me in a nut shell - I'll try and blog weekly if nothing else!
Eleanor.
I've tried to set up a blog elsewhere but something's gone wrong so I figured if others can do this then so can I!
Hopefully I'm going to find time to blog fairly regularly...but typical of life with my prem kids, setting up this blog was interrupted by a phone call with T's dietitian!
Who am I?
I'm a full time mother - truly full time with this lot!
I homeschool, largely due to the kids not getting their needs met in our wonderful educational system here in New Zealand, but also due to bullying problems - which seems to be a universal problem. But I have found that the homeschool lifestyle is good - so much less stressful than dealing with school crap everyday!
I also have a little company called Little Tom - www.littletom.co.nz which sells properly sized clothing for premature and small new born babies.
I have 3 wonderful boys - W aged 9 and a half, N aged 7 and T aged nearly 3.
I also have a great and supportive husband - P. He does hugely long hours at work and sings as a paying hobby so often it's just the kids and me 24/7 or very nearly.
Apart from the obvious reasons to blog I decided to do this because my kids are the 'invisible preemies' or prems. They are 'late' prems. Still prems and they still struggle, just in different ways than say a 24 weeker but struggle none the less. They get ignored and forgotten in research, by doctors, by teachers (even though it has been shown that kids born even as late as 36 gestation are hugely more likely to have reading, writing, maths and fine motor skill problems and delays). My boys will carry their prematurity through life with them just as much as any other premature child.
W was born at 33 weeks gestation and weighing 3lb 14 oz or 1795g. He got through the NICU okay but once home the shit hit the fan. We dealt with reflux, failure to thrive (FTT), food aversions, apnoea episodes (where he stopped breathing in his sleep), developmental delays and eventually a diagnosis of Asperger's Syndrome - a form of high functioning autism.
There is no family history of Autistic Spectrum Disorders and the psychiatrist who diagnosed him said he had seen this more and more often in kids who were born prematurely, especially when the birth was difficult. W was delivered by emergency caesarian section due to my pre-eclampsia. He was deprived oxygen for a short period around his birth and didn't breathe on his own for a minute and a half. So who knows what actually happened to him...
They told my husband that they weren't sure he was going to make it through his first 24 hours but he can't remember why and I was too ill to be told - or so they decided anyway.
He's a wonderful kid these days anyway!
N was born at 36 weeks and 3 days, again an emergency caesarian section due to my pre-eclampsia and weighed 5lb 12 oz or 2620g. He had only 3 days in the NICU as he had respiratory problems and needed CPAP for a couple of days. He then came to me in the ward and we went home all together! N also dealt with severe reflux, feeding problems, FTT and some developmental delays. He seemed to get through it all but middle of last year he was diagnosed with ADHD and is now on Ritalin. This has made a massive difference to all of us - and again kids born prematurely, even as late as 36 weeks, have a 10 fold increased risk of ADHD - and again we have no family history. N also had a Nissen Fundoplication in October last year to finally deal with his on going reflux.
N is also a wonderful kid if a little challenging at times!
T was also born at 36 weeks - exactly, again and emergency caesarian section due to my pre-eclampsia. He weighed 5lb 11 oz or 2580g. This time I managed to not have a baby in the NICU and he stayed with me all the way through. T has struggled with feeding and weight gain pretty much ever since birth due to reflux. I was convinced he was refluxing at a couple of days old although told all prems reflux and not to wish it into reality - typical pat on the head to a postnatal mother. Never mind all my experience with reflux and the fact that this was my 3rd child and my 3rd preemie!
At 3 months old T got horribly thin and wound up needed nasogastric tube feeding. After 11 days in hospital he came home - plus tube. We managed tube feeding at home for about 3 weeks before he seemed to be doing better.
Due to some research and challenging on my part T's cow's milk protein allergy was picked up around 18 months old - and we discovered an allergy to soy at the same time. So the poor kid can't have any dairy products - or any soy! A huge culinary challenge.
T is now nearly 3 and still dealing with allergy problems and terrible reflux. He's still on meds and still underweight. We are battling on a daily basis to get him to eat anything much at all. He's now just hanging on the 3rd centile for his age, having dropped down the charts all year.
At the moment we have a dietitian, paediatrician, paediatric surgeon and GP involved with his care. We are waiting for 2 different lots of speech therapists at the moment. One lot to work with him on his pretty delayed speech and another lot to work with him on feeding issues.
But feeding therapy is going to have to wait until after we get T through surgery for his reflux as well. It appears, especially after having talked to the dietitian again today, that he is going to need to have a feeding tube surgically implanted after his nissen.
That's a thought which scares me witless and makes me feel like I've failed my child. But realistically, with developmental delays, hugely difficult feeding, all the learnt behaviour from reflux and his already low weight, it'd be irresponsible to go into his surgery without that kind of option and I actually will be failing T if I didn't take all steps I could to ensure adequate nutrition. His diet right now is horribly deficient - the dietitian says that if he weren't on formula he'd be suffering from malnutrition!
He's also a surprisingly happy and fun kid despite all the problems.
So that's me in a nut shell - I'll try and blog weekly if nothing else!
Eleanor.
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