Any PH with kids with disabilities or long term illness?
Discussion
Just wondered if any of you guys like me have a child/ children with complicated medical probs?
I have a son with a rare (500 worldwide) genetic metabolic condition. We also lost a daughter to meningitis 2 yrs ago. So have had a rough time!!
Thought it would be good to share stories, experiences etc.
I have a son with a rare (500 worldwide) genetic metabolic condition. We also lost a daughter to meningitis 2 yrs ago. So have had a rough time!!
Thought it would be good to share stories, experiences etc.
My step daughter has autism spectrum, she is about 2.5 years behind at 6 and yet still the schools continue to push her into a new year every year despitre saying that she is currently at preschool level. I f
king hate the bullst spewed by schools and the educational establishment, she's our daughter why not let us have a say in her education and hold her back a year.
Sorry needed to rant, after yet another set back in trying to get the statement, sometimes I think we should just burn it all down and start again.
king hate the bullst spewed by schools and the educational establishment, she's our daughter why not let us have a say in her education and hold her back a year.Sorry needed to rant, after yet another set back in trying to get the statement, sometimes I think we should just burn it all down and start again.
Sushi said:
My step daughter has autism spectrum, she is about 2.5 years behind at 6 and yet still the schools continue to push her into a new year every year despitre saying that she is currently at preschool level. I fking hate the bullst spewed by schools and the educational establishment, she's our daughter why not let us have a say in her education and hold her back a year.
Sorry needed to rant, after yet another set back in trying to get the statement, sometimes I think we should just burn it all down and start again.
Sushi, sorry to hear the school system is failing your daughter. Is she at mainstream or a special school. I don't know whether you've seen this piece of news... http://www.bbc.co.uk/news/education-12677259... remains to be seen if it will make things better. I hope so.king hate the bullst spewed by schools and the educational establishment, she's our daughter why not let us have a say in her education and hold her back a year.Sorry needed to rant, after yet another set back in trying to get the statement, sometimes I think we should just burn it all down and start again.
She is currently at a mainstream school and the doctors have all suggested that unless absolutely necessary we should keep her there to help with her social skill problems (she has serious speech issues so struggles to make friends or talk to other kids) but I'm honestly going to kick off if they force her to move up again next year.
The last meeting we had with the SENCO and teacher said she was working at a preschool level and she is in year two, if they move her on she will be out of the nursery and infant school and into a whole new world of issues at juniors, I can't understand why they are pushing her through when they have openly said she is 2 years behind. I read that article and I'm not sure how much of a difference it'll make, I wish I could be optomistic, but my experiences so far have left me more than jaded with the current system. It needs ripping apart and rebuilding.
The last meeting we had with the SENCO and teacher said she was working at a preschool level and she is in year two, if they move her on she will be out of the nursery and infant school and into a whole new world of issues at juniors, I can't understand why they are pushing her through when they have openly said she is 2 years behind. I read that article and I'm not sure how much of a difference it'll make, I wish I could be optomistic, but my experiences so far have left me more than jaded with the current system. It needs ripping apart and rebuilding.
Sushi said:
She is currently at a mainstream school and the doctors have all suggested that unless absolutely necessary we should keep her there to help with her social skill problems (she has serious speech issues so struggles to make friends or talk to other kids) but I'm honestly going to kick off if they force her to move up again next year.
The last meeting we had with the SENCO and teacher said she was working at a preschool level and she is in year two, if they move her on she will be out of the nursery and infant school and into a whole new world of issues at juniors, I can't understand why they are pushing her through when they have openly said she is 2 years behind. I read that article and I'm not sure how much of a difference it'll make, I wish I could be optomistic, but my experiences so far have left me more than jaded with the current system. It needs ripping apart and rebuilding.
I would honestly consider thinking about a special school. It's just that from my experience mainstream teachers have no idea when it comes to kids that require a little more. Our experience of special schools has been outstanding. At my son's school they cater from kids as disabled as my son to children while mild autism and seem to be able to cater for them all seemlessly ( well almost!).The last meeting we had with the SENCO and teacher said she was working at a preschool level and she is in year two, if they move her on she will be out of the nursery and infant school and into a whole new world of issues at juniors, I can't understand why they are pushing her through when they have openly said she is 2 years behind. I read that article and I'm not sure how much of a difference it'll make, I wish I could be optomistic, but my experiences so far have left me more than jaded with the current system. It needs ripping apart and rebuilding.
The mainstream schools are often keen to keep kids with special needs within their schools as they get a huge amount of cash per student - but - in my experience the money never seems to be spent on the child, it gets sucked up into the system. Where are you based?
nickmac209 said:
Just wondered if any of you guys like me have a child/ children with complicated medical probs?
I have a son with a rare (500 worldwide) genetic metabolic condition. We also lost a daughter to meningitis 2 yrs ago. So have had a rough time!!
Thought it would be good to share stories, experiences etc.
Sorry to read this must have been a nightmare losing a little one really do sympathise. My little one was born with uni lateral talipes but seems to be doing okay.I have a son with a rare (500 worldwide) genetic metabolic condition. We also lost a daughter to meningitis 2 yrs ago. So have had a rough time!!
Thought it would be good to share stories, experiences etc.
996 sps said:
Sorry to read this must have been a nightmare losing a little one really do sympathise. My little one was born with uni lateral talipes but seems to be doing okay.
Thanks, it was very very tough. She was one of twins, they both got a strep B infection in hospital at 4 weeks. They treated Isobel but Doc refused to treat Abbie with Anti-Biotics (we'll never know why) Infection spread to sepsis then to meningitis. She was horrifically brain damaged with a great deal of associated problems. Was on 3 hrly medications (up to 5 meds each time) 24hrs a day. She lost her terrible fight and suffering when she was just short of 2 yrs. How old is your little one? A friend of ours son had the same prob - was in plaster for some time but is absolutely fine now. Hope it goes the same way with your kid.
nickmac209 said:
996 sps said:
Sorry to read this must have been a nightmare losing a little one really do sympathise. My little one was born with uni lateral talipes but seems to be doing okay.
Thanks, it was very very tough. She was one of twins, they both got a strep B infection in hospital at 4 weeks. They treated Isobel but Doc refused to treat Abbie with Anti-Biotics (we'll never know why) Infection spread to sepsis then to meningitis. She was horrifically brain damaged with a great deal of associated problems. Was on 3 hrly medications (up to 5 meds each time) 24hrs a day. She lost her terrible fight and suffering when she was just short of 2 yrs. How old is your little one? A friend of ours son had the same prob - was in plaster for some time but is absolutely fine now. Hope it goes the same way with your kid.
. It makes me feel so very lucky, I carry Strep B and it was only discovered because I had a swab for something else and because I was pregnant they checked for it. As a result I had i/v antibiotics whilst in labour. Had it not been for that swab my boy could have had a very different start in life.My sister lives in Australia and pregnant women are routinely chesked with a reliability of 96%, yet over here they won't do it because they reckon the test is unreliable!! I can only assume they use a different test.
bexVN said:
I'm so sorry for your loss . It makes me feel so very lucky, I carry Strep B and it was only discovered because I had a swab for something else and because I was pregnant they checked for it. As a result I had i/v antibiotics whilst in labour. Had it not been for that swab my boy could have had a very different start in life.
My sister lives in Australia and pregnant women are routinely chesked with a reliability of 96%, yet over here they won't do it because they reckon the test is unreliable!! I can only assume they use a different test.
Thanks . With the twins it was a late onset strep B so couldn't be avoided. The infection came from their surrounding environment after birth (4 weeks. But I totally agree with respect to the testing - I believe it is only a finacial decision that all mothers are not tested.. It makes me feel so very lucky, I carry Strep B and it was only discovered because I had a swab for something else and because I was pregnant they checked for it. As a result I had i/v antibiotics whilst in labour. Had it not been for that swab my boy could have had a very different start in life.My sister lives in Australia and pregnant women are routinely chesked with a reliability of 96%, yet over here they won't do it because they reckon the test is unreliable!! I can only assume they use a different test.
Hi Nick, Really sorry about all your family troubles but glad to see that you appear to be recovering a little from your ordeal & reaching out to help others.
I entirely endorse your view that children with special needs are best schooled in special schools where they have all the expertise & equipment to look after your child & to realise their maximum potential.
I hope you realise who I am & would look forward to a pm - sometime, when you're able & may be we can take it from there.
I entirely endorse your view that children with special needs are best schooled in special schools where they have all the expertise & equipment to look after your child & to realise their maximum potential.
I hope you realise who I am & would look forward to a pm - sometime, when you're able & may be we can take it from there.
I don't think I really belong here but I can share having had three premature babies who spent a lot of time in and out of hospital in their first year.
I am very sorry to hear the above stories. I do feel we have rolled the dice and won each time.
My eldest was born due to a strep A infection and was cooked alive for some time before he was removed under GA - apparently blue. He had severe RDS and the doctors said he was much worse than expected for gestation. He came home apprently ok but had severe reflux which impacted his development - he was late to smile and never responded to stimlus eg keys rattling at 3 months corrected. At 9 months old the doctors said he had spent so long being sick etc it had impacted his development and he was furtrher behind than his correted age. He was late to sit and then very late to talk - we saw a useless speach therapist. He is still very immature for school - being one of the youngest in the year and being behind on top. I always wonder what would have happpened had he not been cooked alive with a heart rate off the charts for several hours before birth. It maybe pointless speculation.
No 2 was also prem but less poorly intially - only 3 weeks in HDU/SCBU. Came home and had severe reflux, stopped breathing. Then we had the MRSA on skin farce (caught in SCBU). Then another stopped breathing. Lots of jerky episodes. When she finally looked better we had an infection that saw another week in hospital and a decline in feeding that led to no weight gain from 6-12 months. By which point I was ecpecting no.3. Not ideal. Overall she is a star and I am very relieved on this front.
No.3 most prem of the lot. Longest stay in SCBU (about 6 weeks). Followed by lots of readmissions, broncholitis endless times, the worst reflux, an operation, stopping breathing more than once. Endless bowel issues. Again I feel we are out of the worst now he is at 18 months. We are left with chest issues (query asthma) and diahhrhea most days - very cold last 6 weeks, simple things like a 24 hour bug can take a week to resolve. Developmentally is a big question. However this child is tough.
Sorry. I feel better for getting that off my chest.It's been a stressful few years. I am extremely lucky as I feel we are out of the other side of it with just minor issues. I cant' imagine how difficult it must be to have real problems. I take my hat off to parents who have to cope with illness and disability day after day. From my short experience it really takes it out of you - it is a mentally and physically exhausting process. I don't think I could cope with the endless rollercoster of highs, lows, frustrations and joys that I have seen other parents go through.
One thing that I am facing is the decision to have another child. In my case I know the baby would be premature - would be almost guaranteed to have severe reflux and various other minor issues. It worries me more that I would roll the dice and end up with an extremely premature baby and or a baby with severe long term issues. That seems to be quite a real possibility and I don't know if I can gamble with mine and my children's lives.
I am very sorry to hear the above stories. I do feel we have rolled the dice and won each time.
My eldest was born due to a strep A infection and was cooked alive for some time before he was removed under GA - apparently blue. He had severe RDS and the doctors said he was much worse than expected for gestation. He came home apprently ok but had severe reflux which impacted his development - he was late to smile and never responded to stimlus eg keys rattling at 3 months corrected. At 9 months old the doctors said he had spent so long being sick etc it had impacted his development and he was furtrher behind than his correted age. He was late to sit and then very late to talk - we saw a useless speach therapist. He is still very immature for school - being one of the youngest in the year and being behind on top. I always wonder what would have happpened had he not been cooked alive with a heart rate off the charts for several hours before birth. It maybe pointless speculation.
No 2 was also prem but less poorly intially - only 3 weeks in HDU/SCBU. Came home and had severe reflux, stopped breathing. Then we had the MRSA on skin farce (caught in SCBU). Then another stopped breathing. Lots of jerky episodes. When she finally looked better we had an infection that saw another week in hospital and a decline in feeding that led to no weight gain from 6-12 months. By which point I was ecpecting no.3. Not ideal. Overall she is a star and I am very relieved on this front.
No.3 most prem of the lot. Longest stay in SCBU (about 6 weeks). Followed by lots of readmissions, broncholitis endless times, the worst reflux, an operation, stopping breathing more than once. Endless bowel issues. Again I feel we are out of the worst now he is at 18 months. We are left with chest issues (query asthma) and diahhrhea most days - very cold last 6 weeks, simple things like a 24 hour bug can take a week to resolve. Developmentally is a big question. However this child is tough.
Sorry. I feel better for getting that off my chest.It's been a stressful few years. I am extremely lucky as I feel we are out of the other side of it with just minor issues. I cant' imagine how difficult it must be to have real problems. I take my hat off to parents who have to cope with illness and disability day after day. From my short experience it really takes it out of you - it is a mentally and physically exhausting process. I don't think I could cope with the endless rollercoster of highs, lows, frustrations and joys that I have seen other parents go through.
One thing that I am facing is the decision to have another child. In my case I know the baby would be premature - would be almost guaranteed to have severe reflux and various other minor issues. It worries me more that I would roll the dice and end up with an extremely premature baby and or a baby with severe long term issues. That seems to be quite a real possibility and I don't know if I can gamble with mine and my children's lives.
I would rather not share his name on a forum. I don't know why.
I meant I had a very high fever - over 40 for several hours before he was born. I was lucky to be in hospital - they did a monitoring of heart rates. There was a line at 160 - I thought was the baby but that was mine - my son's was 220 increasing to off the paper. It was termed "fetal distress" - after some hours of this, it was decided neither of us could take it anymore - heartrates were going up with the fever - so they decided to deliver.
I meant I had a very high fever - over 40 for several hours before he was born. I was lucky to be in hospital - they did a monitoring of heart rates. There was a line at 160 - I thought was the baby but that was mine - my son's was 220 increasing to off the paper. It was termed "fetal distress" - after some hours of this, it was decided neither of us could take it anymore - heartrates were going up with the fever - so they decided to deliver.
Yep, have a son with duchenne muscular dystrophy.
We found out when he was five because he started to tip toe, I kept shouting at him to put his feet down but he continued to do it. The Mrs was slightly worried but I kept saying he would grow out of it, she took him off to the docs and we were sent off to a specialist where they took some blood.
Fast forward to friday afternoon and we got a phone call to come and discuss the results, they told us to just come down, no need for an appointment. Monday morning we walked in and went past everyone waiting and were taken into a room with nice sofas, curtains and pot plants at this point my heart sank I knew what these rooms were for. I grabbed the Mrs hand and held it tight as we sat down.
The specialist came in and sat in front of us, he started to ask us how our son was moving around, had we noticed any weakness or falling? we told him about our son falling a few weeks before where he didn't seem to put his hands out to stop himself and fell full on his face leaving a cut nose and two black eyes. He nodded and put his folder down, lent forward and said "I'm sorry to tell you your son has muscular dystrophy, we think it's the worst kind called duchennes. There is no treatment, there is no cure and the prognosis is not very good, he is unlikely to live out his teens"
I spent ages finding out what exactly it was, about how his muscles would break down from everyday wear and tear but were unable to repair themselves like mine do, I'm sure you are all aware how hard it is to read while sobbing. As it dawned on me I will have to watch the slow deterioration of my only child the last string holding my world together snapped.
He's 11 now and the most charming, intelligent and witty person I have ever met, of course he needs someone with him all the time and I gave up work about three years ago to look after him which has been tough, waving goodbye to my lotus was hard but had to be done.
We're currently battling with the council to get a disabled extension on our house but are constantly being told due to the current cuts and economical climate you can sod off, they say we can have a council bungalow on an chav estate that looks like Beirut.
Anyhow he's a happy kid, we spoil him rotten and cut him much more slack than we would have done, he often gets games like GTA IV that he'd never have got if he was ok.
We found out when he was five because he started to tip toe, I kept shouting at him to put his feet down but he continued to do it. The Mrs was slightly worried but I kept saying he would grow out of it, she took him off to the docs and we were sent off to a specialist where they took some blood.
Fast forward to friday afternoon and we got a phone call to come and discuss the results, they told us to just come down, no need for an appointment. Monday morning we walked in and went past everyone waiting and were taken into a room with nice sofas, curtains and pot plants at this point my heart sank I knew what these rooms were for. I grabbed the Mrs hand and held it tight as we sat down.
The specialist came in and sat in front of us, he started to ask us how our son was moving around, had we noticed any weakness or falling? we told him about our son falling a few weeks before where he didn't seem to put his hands out to stop himself and fell full on his face leaving a cut nose and two black eyes. He nodded and put his folder down, lent forward and said "I'm sorry to tell you your son has muscular dystrophy, we think it's the worst kind called duchennes. There is no treatment, there is no cure and the prognosis is not very good, he is unlikely to live out his teens"
I spent ages finding out what exactly it was, about how his muscles would break down from everyday wear and tear but were unable to repair themselves like mine do, I'm sure you are all aware how hard it is to read while sobbing. As it dawned on me I will have to watch the slow deterioration of my only child the last string holding my world together snapped.
He's 11 now and the most charming, intelligent and witty person I have ever met, of course he needs someone with him all the time and I gave up work about three years ago to look after him which has been tough, waving goodbye to my lotus was hard but had to be done.
We're currently battling with the council to get a disabled extension on our house but are constantly being told due to the current cuts and economical climate you can sod off, they say we can have a council bungalow on an chav estate that looks like Beirut.
Anyhow he's a happy kid, we spoil him rotten and cut him much more slack than we would have done, he often gets games like GTA IV that he'd never have got if he was ok.
My 16 y o daughter has Downs and had surgery for major heart disease at 6 months old.
Further to above discussion - I agree medics generally know no more about education than the average PHer (and I speak as one in both groups!). Some of the specialist learning difficulty paediatricians will be different I suspect.
My daughter has been in mainstream education all along, albeit with varying amounts of additional support. Our High School has a great Learning Support Department which has made it a success. Maybe being a rural population precludes their being the numbers for a Special School. I feel that kids learn a lot from mimickry, and if they're in with a class of ordinary kids, they'll learn more 'normal' behaviour and socialisation than if in a class of children-with-euphemisms.
Further to above discussion - I agree medics generally know no more about education than the average PHer (and I speak as one in both groups!). Some of the specialist learning difficulty paediatricians will be different I suspect.
My daughter has been in mainstream education all along, albeit with varying amounts of additional support. Our High School has a great Learning Support Department which has made it a success. Maybe being a rural population precludes their being the numbers for a Special School. I feel that kids learn a lot from mimickry, and if they're in with a class of ordinary kids, they'll learn more 'normal' behaviour and socialisation than if in a class of children-with-euphemisms.
My youngest daughter, 2 years old, has cerebral palsy. She was born as white as a sheet, and was taken straight away from us and spent the next six weeks wired up from every where in the NeoNatal unit.
Was told that she wouldn't make it and to prepare for the worst. Then we were told that she might be ok but no quality of life.
Fast forward two years she cannot speak but uses Makaton to communicate and is having speech therapy so is getting better in that regard.
She can take a few wobbly steps on her own but give her the walking frame and she whizzes around banging and crashing about and generally clips at everyones heels which she finds hilarious. She will certainly need a lot of help but is no where near what we originally were advised.
She is a little monkey and we all think the world of her and is certainly an inspiration to everyone.
Was told that she wouldn't make it and to prepare for the worst. Then we were told that she might be ok but no quality of life.
Fast forward two years she cannot speak but uses Makaton to communicate and is having speech therapy so is getting better in that regard.
She can take a few wobbly steps on her own but give her the walking frame and she whizzes around banging and crashing about and generally clips at everyones heels which she finds hilarious. She will certainly need a lot of help but is no where near what we originally were advised.
She is a little monkey and we all think the world of her and is certainly an inspiration to everyone.
Our eldest has Haemolytic Anaemia, started a thread when he first was admitted for a blood transfusion, many an update since - http://www.pistonheads.com/gassing/topic.asp?h=0&a...
He should in theory make a full recovery, of course that's one of many possible outcomes and no one can say for sure the long term effects of the treatment he's on (it's only been about for ~10yrs).
Reading some of the posts above, my best wishes to all
He should in theory make a full recovery, of course that's one of many possible outcomes and no one can say for sure the long term effects of the treatment he's on (it's only been about for ~10yrs).
Reading some of the posts above, my best wishes to all
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