PH Parents of 09..
Discussion
SBDJ said:
Since having the PEG+Fundo my boy makes himself vomit if you try and give him any food or drink orally which is annoying as he used to love his food!
Ack! It's possible that his fundo is a bit tight and is making it feel funny when he swallows - might be worth asking his paediatrician about it next chance you get. I've had an offer of a toddler powerchair free to a good home - you can drive it with switches so don't need to be able to manage a joystick or anything - do you fancy trying Mason in it?
Evening, me again, checking in for my next dose of catharsis..
How's everyone doing? Things well I hope?
I'm afraid I'm having another bad day, the trouble is, you see, that forgetting is actually really easy, it's remembering that's difficult..
I say that because, with Daisy bombing around the house, it's easy to forget her conditions... And then something happens to make someone whisper in your ear "now, don't forget old chap, your daughter is disabled"..
It was a really simple call from nursery today, just asking to have a chat about how Daisy is doing, but wanting to have a get together to discuss how she's doing and some of the nursery nurse's concerns about her..
Cognitively, socially, behaviourally, Daisy is substantially ahead of her peers, but her (reduced) mobility makes a day at nursery hard for her, she finds it very tiring and so as the day progresses she tends to engage less..
She adores nursery and I'll do everything I can to make sure that she can carry on going, but today made me wobble.. Like I say, it's that whisper in your ear, that fleeting thought when you get a moment to pause..
It hurts..
I want to fix it..
I cant..
How's everyone doing? Things well I hope?
I'm afraid I'm having another bad day, the trouble is, you see, that forgetting is actually really easy, it's remembering that's difficult..
I say that because, with Daisy bombing around the house, it's easy to forget her conditions... And then something happens to make someone whisper in your ear "now, don't forget old chap, your daughter is disabled"..
It was a really simple call from nursery today, just asking to have a chat about how Daisy is doing, but wanting to have a get together to discuss how she's doing and some of the nursery nurse's concerns about her..
Cognitively, socially, behaviourally, Daisy is substantially ahead of her peers, but her (reduced) mobility makes a day at nursery hard for her, she finds it very tiring and so as the day progresses she tends to engage less..
She adores nursery and I'll do everything I can to make sure that she can carry on going, but today made me wobble.. Like I say, it's that whisper in your ear, that fleeting thought when you get a moment to pause..
It hurts..
I want to fix it..
I cant..
Slow progress here. In and out of hospital constantly with vomiting and dehydration. A few other things:
Mason has developed focal seizures which are triggered by air movement - such as wind or fans. Very difficult that one!
Botox in his hip next week.
Replacement of PEG tube with button soon.
Hip operation in a couple of months, with major hip surgery a few years later.
On the plus side Mason has started playing with toys with me, if I spin a rattle he will reach out and copy me.
He's loving nursery - currently afternoons 5 days a week, full time in September. It's a very specialist nursery, but he loves it. He gets to swim twice a week there too so he's happy!
Still no mobility at all though and no real progress - at present he can't even really roll over. I really do fear for the future. He's also getting too heavy to carry up and down stairs and have been advised he either needs downstairs living facilities or a proper floor-to-floor lift. Neither of these are really possible in our current house.
Mason has developed focal seizures which are triggered by air movement - such as wind or fans. Very difficult that one!
Botox in his hip next week.
Replacement of PEG tube with button soon.
Hip operation in a couple of months, with major hip surgery a few years later.
On the plus side Mason has started playing with toys with me, if I spin a rattle he will reach out and copy me.
He's loving nursery - currently afternoons 5 days a week, full time in September. It's a very specialist nursery, but he loves it. He gets to swim twice a week there too so he's happy!
Still no mobility at all though and no real progress - at present he can't even really roll over. I really do fear for the future. He's also getting too heavy to carry up and down stairs and have been advised he either needs downstairs living facilities or a proper floor-to-floor lift. Neither of these are really possible in our current house.
SBDJ said:
Slow progress here. In and out of hospital constantly with vomiting and dehydration. A few other things:
Mason has developed focal seizures which are triggered by air movement - such as wind or fans. Very difficult that one!
Botox in his hip next week.
Replacement of PEG tube with button soon.
Hip operation in a couple of months, with major hip surgery a few years later.
On the plus side Mason has started playing with toys with me, if I spin a rattle he will reach out and copy me.
He's loving nursery - currently afternoons 5 days a week, full time in September. It's a very specialist nursery, but he loves it. He gets to swim twice a week there too so he's happy!
Still no mobility at all though and no real progress - at present he can't even really roll over. I really do fear for the future. He's also getting too heavy to carry up and down stairs and have been advised he either needs downstairs living facilities or a proper floor-to-floor lift. Neither of these are really possible in our current house.
Erk, in and out of hospital isn't fun. Mason has developed focal seizures which are triggered by air movement - such as wind or fans. Very difficult that one!
Botox in his hip next week.
Replacement of PEG tube with button soon.
Hip operation in a couple of months, with major hip surgery a few years later.
On the plus side Mason has started playing with toys with me, if I spin a rattle he will reach out and copy me.
He's loving nursery - currently afternoons 5 days a week, full time in September. It's a very specialist nursery, but he loves it. He gets to swim twice a week there too so he's happy!
Still no mobility at all though and no real progress - at present he can't even really roll over. I really do fear for the future. He's also getting too heavy to carry up and down stairs and have been advised he either needs downstairs living facilities or a proper floor-to-floor lift. Neither of these are really possible in our current house.
Playing however is FANTASTIC. I'm so pleased - this says huge things about his awareness and also physical abilities - he knows you're playing, he knows he can copy you, he has enough control of the right muscles to actually do it... that kind of stuff is a big deal as it's a really good sign for communication and choice making as he grows up.
re: adapting house - you'd be amazed what can be done, with through-floor lifts and the like. An option that you could also consider is a stairlift with a specialist seat on it, a hoist at each end and a spare wheelchair (or hoist track straight through to his bedroom) upstairs. That would mean no lift and no huge re-organising of the house, although it does mean that every trip up/downstairs has two transfers in it, which can be a pain. If you think that either a through-floor lift or setting him up downstairs is your best option than an extension may make things MUCH easier - especially for the lift as you then don't need to find room for a lift shaft inside the current fabric of the house. Domestic lifts don't need a true shaft building and don't have a huge amount of external machinery like commercial ones do so it doesn't need all that much room.
Mobility - Mason clearly has enough eyesight, hand movement and awareness to be very successful using a powerchair so that will probably become the priority as far as developing skills goes over the next few years. He's old enough and able enough to start learning now - obviously with a toddler you need to go fairly slowly
but they do get the hang of it pretty quickly once you've got the right seating and access method (eg joystick/adapted joystick/one switch/many switches etc etc) sorted out. Does he play with switch toys at the moment? I'm informally supporting a family with a little girl who also had a brain injury at birth and has epilepsy and cerebral palsy - she's just turned 6 and is doing fantastically well in mainstream school with a modified curriculum and one-on-one support. She had her first go driving my powerchair a few weeks ago - sat on my knee with me supporting her in the best position I could manage. She'll be having hip surgery (probably the same as Mason's) in the next few months as well - it's no fun but the good thing about doing it with the little'uns is that they forget, by the time he's ten or twelve he'll have almost no memory of all the stuff he got through now. A mate of mine had the same surgery at 14 and was miserable - at that age you've got far too much in your life to want to spend ages in hospital and in a hip spica and so on. Better to get it over with early and then it's done and you can get on with forgetting it.
If you want to look at ways that Mason might be able to start learning to use a powerchair, the most relevant information will be about the Smart Wheelchair project run by Dundee university along with PAMIS who represent people with profound and multiple impairments and their families in Scotland.
All the best for the various medical bits you've got coming up - I'm jealous that Mason can have a button, I'm stuck with a PEG for good now.
Thanks.
I'm really happy about the playing thing too, he often copies me now. I taught him to scratch things with his nails - pillows etc - and he now copies me doing it in turns which I love. He really only does these things with me though which is a bit unfair on my OH.
We had our current house looked at by an OT and she wasn't really happy with it at all. Apparently insufficient floor space and unsuitable for an extension. Really unhappy at the suggestion of a stair lift. This is still ongoing, I'm sure we can come up something though.
He doesn't really play with switch toys although his hand movement and control is slowly increasing.
Hip surgery now is essential, the consultant says it is so bad that if its not done asap then he will have uncurable pain for the rest of his life. Absolute no brainer that one!
How come you are stuck with a PEG? We are hoping for a button - he's been put on the waiting list for surgery, but its a toss up whether it will be a button or if he doesnt stop vomiting they might go for a GJ tube instead.
I'm really happy about the playing thing too, he often copies me now. I taught him to scratch things with his nails - pillows etc - and he now copies me doing it in turns which I love. He really only does these things with me though which is a bit unfair on my OH.
We had our current house looked at by an OT and she wasn't really happy with it at all. Apparently insufficient floor space and unsuitable for an extension. Really unhappy at the suggestion of a stair lift. This is still ongoing, I'm sure we can come up something though.
He doesn't really play with switch toys although his hand movement and control is slowly increasing.
Hip surgery now is essential, the consultant says it is so bad that if its not done asap then he will have uncurable pain for the rest of his life. Absolute no brainer that one!
How come you are stuck with a PEG? We are hoping for a button - he's been put on the waiting list for surgery, but its a toss up whether it will be a button or if he doesnt stop vomiting they might go for a GJ tube instead.
Slight bump!
We had an appointment with the hip consultant, which turned out to be pre-op assessment for an operation the week after next which we hadn't received a letter for. It's phase one of his hip operations and he'll be in a brace held with his legs apart and elevated for just shy of 6 weeks afterwards - timed the brace to be removed at the same time as his mic-key is done mid april (sorry Becca). Joined up thinking, I like it.
Carbamazepine isn't controlling his seizures so we're waiting on an alternative following input from the neurologists.
Vomiting still a major issue (roughly 2 weeks a month of it at the moment) and is causing weight loss that he can't afford, I've finally convinced them of this and in a meeting with the consultant I asked about the possible use of the antiemetic drug Ondansetron. They agree it could be worth a try and have also suggested Pantoprazole as another possible route.
It's nice to be listened to!
We had an appointment with the hip consultant, which turned out to be pre-op assessment for an operation the week after next which we hadn't received a letter for. It's phase one of his hip operations and he'll be in a brace held with his legs apart and elevated for just shy of 6 weeks afterwards - timed the brace to be removed at the same time as his mic-key is done mid april (sorry Becca). Joined up thinking, I like it.
Carbamazepine isn't controlling his seizures so we're waiting on an alternative following input from the neurologists.
Vomiting still a major issue (roughly 2 weeks a month of it at the moment) and is causing weight loss that he can't afford, I've finally convinced them of this and in a meeting with the consultant I asked about the possible use of the antiemetic drug Ondansetron. They agree it could be worth a try and have also suggested Pantoprazole as another possible route.
It's nice to be listened to!
Just been looking through the thread again , 2 1/2 years , times seemes to have flown by , Our feelings and best wishes to all parents on here and especially to those who have children who have suffered illnesses and disabilities , reading through some of the posts has been heart rending.
The wife is Preparing to leave Siberia and return back to the UK she's expecting our second in early June and theres lots to prepare , including buying a house in the UK !!!It's going to be very difficult for me to be here at work and not have them close by at her mothers in the village.travelling back every 2 months
A few photos of our Sasha born Oct 05.09
with her best friend Dasha .........Sasha & Dasha sounds like a cartoon !!
In mischevous mood ,
Ive learned alot in the two 1/2 years , the most fantastic experience is finally being a Dad , with all the ups and downs , working away , travelling .......Her first plane journey was to Russia at 3 months !! nothing beats coming home and hearing those words " Daddy "
all the best
DBS
The wife is Preparing to leave Siberia and return back to the UK she's expecting our second in early June and theres lots to prepare , including buying a house in the UK !!!It's going to be very difficult for me to be here at work and not have them close by at her mothers in the village.travelling back every 2 months
A few photos of our Sasha born Oct 05.09
with her best friend Dasha .........Sasha & Dasha sounds like a cartoon !!
In mischevous mood ,
Ive learned alot in the two 1/2 years , the most fantastic experience is finally being a Dad , with all the ups and downs , working away , travelling .......Her first plane journey was to Russia at 3 months !! nothing beats coming home and hearing those words " Daddy "
all the best
DBS
Yep, our little'un is just over 2 and a half years now, been a journey and a half, ups and downs along the way, but she is a joy to watch.
ps sorry to sound like mumsnet, but homebase currently have soft close toilet seats for £15, half price, best £15 quid we've spent in a while, no more risk of slamming seat on little fingers.
ps sorry to sound like mumsnet, but homebase currently have soft close toilet seats for £15, half price, best £15 quid we've spent in a while, no more risk of slamming seat on little fingers.
Bit of a bump, rough week.
Mason didn't wake up on Tuesday - I had to wake him up for school. He looked a bit out of it, but he'd had one of his laughing until 2am nights so I just assumed he was tired and that was why he was spaced out.
He goes to a special needs school and they called us to collect him after school as the taxi was refusing to take him as he'd thrown up. Turns out he had slept all day. Coupled with the vomiting it looked like he was coming down with something so we took him home, tucked him up in bed and hooked him up to some fluids.
Later that evening he still didn't look right and my OH took him to hospital where they scratched their heads, thought he must have an infection and admitted him into isolation. I came down after work and stayed through the night - still asleep. We're now into Wednesday and he hadn't really woken up yet. A fresh batch of doctors noticed his feet twitching and a few tests later it's decided that he has suffered a massive epileptic fit early hours of Tuesday morning and not recovered from it. It was weird - when he was awake there was just random eye movement, nothing else. No limb movement, no crying, nothing, then he'd just fall back asleep again.
He's had a whole raft of different meds and we've had a couple of brief periods of crying but the killer for me is that it's now Friday and he's still asleep
Mason didn't wake up on Tuesday - I had to wake him up for school. He looked a bit out of it, but he'd had one of his laughing until 2am nights so I just assumed he was tired and that was why he was spaced out.
He goes to a special needs school and they called us to collect him after school as the taxi was refusing to take him as he'd thrown up. Turns out he had slept all day. Coupled with the vomiting it looked like he was coming down with something so we took him home, tucked him up in bed and hooked him up to some fluids.
Later that evening he still didn't look right and my OH took him to hospital where they scratched their heads, thought he must have an infection and admitted him into isolation. I came down after work and stayed through the night - still asleep. We're now into Wednesday and he hadn't really woken up yet. A fresh batch of doctors noticed his feet twitching and a few tests later it's decided that he has suffered a massive epileptic fit early hours of Tuesday morning and not recovered from it. It was weird - when he was awake there was just random eye movement, nothing else. No limb movement, no crying, nothing, then he'd just fall back asleep again.
He's had a whole raft of different meds and we've had a couple of brief periods of crying but the killer for me is that it's now Friday and he's still asleep
SBDJ said:
Bit of a bump, rough week.
Mason didn't wake up on Tuesday - I had to wake him up for school. He looked a bit out of it, but he'd had one of his laughing until 2am nights so I just assumed he was tired and that was why he was spaced out.
He goes to a special needs school and they called us to collect him after school as the taxi was refusing to take him as he'd thrown up. Turns out he had slept all day. Coupled with the vomiting it looked like he was coming down with something so we took him home, tucked him up in bed and hooked him up to some fluids.
Later that evening he still didn't look right and my OH took him to hospital where they scratched their heads, thought he must have an infection and admitted him into isolation. I came down after work and stayed through the night - still asleep. We're now into Wednesday and he hadn't really woken up yet. A fresh batch of doctors noticed his feet twitching and a few tests later it's decided that he has suffered a massive epileptic fit early hours of Tuesday morning and not recovered from it. It was weird - when he was awake there was just random eye movement, nothing else. No limb movement, no crying, nothing, then he'd just fall back asleep again.
He's had a whole raft of different meds and we've had a couple of brief periods of crying but the killer for me is that it's now Friday and he's still asleep
Oof, poor Mason!Mason didn't wake up on Tuesday - I had to wake him up for school. He looked a bit out of it, but he'd had one of his laughing until 2am nights so I just assumed he was tired and that was why he was spaced out.
He goes to a special needs school and they called us to collect him after school as the taxi was refusing to take him as he'd thrown up. Turns out he had slept all day. Coupled with the vomiting it looked like he was coming down with something so we took him home, tucked him up in bed and hooked him up to some fluids.
Later that evening he still didn't look right and my OH took him to hospital where they scratched their heads, thought he must have an infection and admitted him into isolation. I came down after work and stayed through the night - still asleep. We're now into Wednesday and he hadn't really woken up yet. A fresh batch of doctors noticed his feet twitching and a few tests later it's decided that he has suffered a massive epileptic fit early hours of Tuesday morning and not recovered from it. It was weird - when he was awake there was just random eye movement, nothing else. No limb movement, no crying, nothing, then he'd just fall back asleep again.
He's had a whole raft of different meds and we've had a couple of brief periods of crying but the killer for me is that it's now Friday and he's still asleep
Poor you too, must be terrifying.
It's not THAT unusual for someone that's had a really huge seizure to take a properly long time to recover, especially if they have more fits before they've finished recovering from the big one.
Wishing him a speedy recovery - suspect that previous poster is right, if his brain's just been through a sustained thunderstorm he'll be needing some rest to recover from it.
When he comes home, for your own peace of mind, you might want to look up about seizure alarms, just so you can be really confident that this won't happen again.
Hope the little dude is back to laughing all night very very soon.
Bloody hell mate - I have my fingers crossed for you.
Insofar as my boy is concerned, his mother and I broke up a few months back and she took him to live with her in France. I'm actually over here with him at the moment, first time I've given him a cuddle since they left 4 weeks ago.
Insofar as my boy is concerned, his mother and I broke up a few months back and she took him to live with her in France. I'm actually over here with him at the moment, first time I've given him a cuddle since they left 4 weeks ago.
escargot said:
Bloody hell mate - I have my fingers crossed for you.
Insofar as my boy is concerned, his mother and I broke up a few months back and she took him to live with her in France. I'm actually over here with him at the moment, first time I've given him a cuddle since they left 4 weeks ago.
Sorry to hear that mate! Insofar as my boy is concerned, his mother and I broke up a few months back and she took him to live with her in France. I'm actually over here with him at the moment, first time I've given him a cuddle since they left 4 weeks ago.
SBDJ said:
That's terrible mate, I would hate for my son to be out of practical reach.
We are home now but he's still not himself. No attempts at communication and he is now left handed?
I'm suspecting some kind of neurological damage?
I'm so glad he's home! Frankly I was terrified when I saw your previous post and feared much worse news than this when I saw you'd posted this evening.We are home now but he's still not himself. No attempts at communication and he is now left handed?
I'm suspecting some kind of neurological damage?
Can't remember if I said but my most recent ex has uncontrollable epilepsy (due to a genetic brain defect/difference) and after really bad seizures she's often seriously off-kilter for as much as a week or two.
I'm actually surprised that Mason wasn't already left-handed cos it's that common in people who've had a brain injury/who have CP - he was in a serious minority before now!
He's presumably still somewhat full of all the extra drugs as well as recovering from the seizure, so I wouldn't take any bets about further neuro injury this early. He probably feels rotten - horrible seizure hangovers aren't fun - and a bit confused about what the hell's been going on, give him a few days to settle back in?
It might possibly be worth getting them to scan him at some point just so that you have a baseline to refer to if he has any further issues (I really hope he doesn't but still...) - it's notoriously hard to assess for neuro changes in little kids even when they're not already neurologically impaired.
Welcome home, little dude.
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