Thank you to all the blood donors
Discussion
It is to my everlasting regret that neither me or the wife can donate blood. She was a beneficiary as a teenager and would not be here without an anonymous donor.
I went on my 18th birthday to donate and was told I could not due to my medical history (involving 3 types of malaria, yellow fever, TB, and admission to a Nigerian hospital).
Hope all goes well with your little'un, OP.
I went on my 18th birthday to donate and was told I could not due to my medical history (involving 3 types of malaria, yellow fever, TB, and admission to a Nigerian hospital).
Hope all goes well with your little'un, OP.
Strewth, I'm so so sorry your little'un is having such a rough time.
GOSH should be light years better for blood draws, as well as being international specialists for paediatric haematology. They looked after a couple of schoolfriends of mine absolutely brilliantly, he couldn't be in better hands.
Did they attempt to use numbing cream on the little lad? If not, why not?
GOSH should be light years better for blood draws, as well as being international specialists for paediatric haematology. They looked after a couple of schoolfriends of mine absolutely brilliantly, he couldn't be in better hands.
Did they attempt to use numbing cream on the little lad? If not, why not?
Thank you.
Yes, numbing cream we've used before and had a minimal effect - given they tried the wrists, back of hands, elbows and feet before, then when they all failed just prodded around further where the cream hadn't been. Tried the spray numb stuff as well, worked a treat on me through my t-shirt, not so on the little chap. The main problem isn't the actual pain from the needle (although of course that clearly hurts like hell), it's all the looking about for a vein beforehand, grabbing an arm, stretching a foot etc... he knows what's probably coming so the screaming starts then.
One doctor managed it the other week, with the cream, from the elbow, needle, tube, syringe and went very very gently.... still painful of course, but once in drew it out patiently, and basically job done very effectively. By all accounts GOSH will be more on the effective side, rather than the stab about and see approach.
Anyway, bright little chap today, in finest cheeky toddler mode, which is great - all those extra red blood cells no doubt, and the rate of decline in them appears to be slowing, gradually... we'll see where the Hb count is on Tuesday.
Yes, numbing cream we've used before and had a minimal effect - given they tried the wrists, back of hands, elbows and feet before, then when they all failed just prodded around further where the cream hadn't been. Tried the spray numb stuff as well, worked a treat on me through my t-shirt, not so on the little chap. The main problem isn't the actual pain from the needle (although of course that clearly hurts like hell), it's all the looking about for a vein beforehand, grabbing an arm, stretching a foot etc... he knows what's probably coming so the screaming starts then.
One doctor managed it the other week, with the cream, from the elbow, needle, tube, syringe and went very very gently.... still painful of course, but once in drew it out patiently, and basically job done very effectively. By all accounts GOSH will be more on the effective side, rather than the stab about and see approach.
Anyway, bright little chap today, in finest cheeky toddler mode, which is great - all those extra red blood cells no doubt, and the rate of decline in them appears to be slowing, gradually... we'll see where the Hb count is on Tuesday.
Great Ormond St. now Friday, which is fine, so back into Eastbourne hospital today for another set of blood tests... despite 2hrs waiting (fair enough - ish, they're busy) this time there was no faffing about and it was only a 10min screaming session, managed to find a vein too. We did the numbing cream at home, which worked on his elbows but wasn't very successful on the wrists. Generally the pain isn't the issue, more the anticipation of it. Most were fairly reluctant to have a go at doing it as well, and suddenly became very busy when we arrived - much to the amusement of the nurses (and the most likely cause of the 2hr wait in fact... ho hum!).
Anyway, never mind all that... great result, Hb now up to 11.2
That'd explain the cheeky toddler we have charging around the house, amazing what he can fit out of the cat flap as well...!
In tomorrow to have the line removed from his neck, then we'll see how the results look on Friday up at GOS as well, he's still on the steroids, but things appear to be heading in the right direction which is great.
Anyway, never mind all that... great result, Hb now up to 11.2
That'd explain the cheeky toddler we have charging around the house, amazing what he can fit out of the cat flap as well...!
In tomorrow to have the line removed from his neck, then we'll see how the results look on Friday up at GOS as well, he's still on the steroids, but things appear to be heading in the right direction which is great.
K77 CTR said:
Why are they taking the line out? What if his Hb drops again?
Been in for 15 days and doesn't bleed back anymore (so no use for blood tests). Given the pattern of transfusions the next one, if required, would be past the 21 day limit on the line.... although we were originally told this was 10d then 14d.... good for confidence of course Add to this his veins are now easier to spot, even I can see some reasonable ones... getting anywhere near them, especially if you look remotely medical, is somewhat more tricky however! Anyway, if a further transfusion is needed, a normal cannula is a reasonable possibility; if there's some rapid change for the worse then it all switches to an emergency situation and another more permanent line could go in.
Removing the risk of him getting hacked off with the bunch of pipes tucked under a section of foam covered by a (very) loose tubi-grip/gauze and giving it a good tug is also a plus in my view.
...that's quite a long reply isn't it?! I'll stop thinking about it for now
Ok, I understand would think that the line would be useful for longer than they are saying, dont recall them being changed that frequently in adults.
The reason his veins are easier to spot is that his Hb is relatively higher, if his Hb falls again you will notice his veins appearing to fade due to the body reducing bloodflow to his peripheries.
I hope they find out what is causing this pretty quickly as I'm amazed they have left it 3 weeks in someone his age.
Good luck and fingers crossed
The reason his veins are easier to spot is that his Hb is relatively higher, if his Hb falls again you will notice his veins appearing to fade due to the body reducing bloodflow to his peripheries.
I hope they find out what is causing this pretty quickly as I'm amazed they have left it 3 weeks in someone his age.
Good luck and fingers crossed
SWH Jnr's neck line swiftly removed this afternoon by the same Consultant who installed it, minimal fuss and not too much struggling from the little chap... he was anticipating another blood test and wasn't best impressed by the whole dressing removal from his neck. Anyway, quickest time in that treatment room we've had, good skills.
Seems to be retaining a decent colour too, certainly went proper purple when having a struggle in the treatment room, much more like it.
Now to Friday and Great Ormond St... apparently we can park at the side of the road on the single yellow line and acquire a permit from reception/security - we'll see how that goes in the middle of the day, I'd guess any of the NCP parking around the Russel Sq. area is going to be rammed by midday anyway.
More to follow no doubt, looking reasonably stable currently, we'll see what Friday's tests show.
Seems to be retaining a decent colour too, certainly went proper purple when having a struggle in the treatment room, much more like it.
Now to Friday and Great Ormond St... apparently we can park at the side of the road on the single yellow line and acquire a permit from reception/security - we'll see how that goes in the middle of the day, I'd guess any of the NCP parking around the Russel Sq. area is going to be rammed by midday anyway.
More to follow no doubt, looking reasonably stable currently, we'll see what Friday's tests show.
Thanks, yes we'll see what they say. Guessing he'll need many a follow up blood test at the moment, and he's still on the steroids as well, so they'll need to be reduced etc. Main thing is he's much brighter and certainly the right colour again
Gave up the delights of the train ~3yrs ago (I commute in 3 days a week generally) so it'll make a change heading up in a comfortable Swedish auto barge, rather than in my diesel commuter box.
...clearly I reserve the right to have a good old rant about the parking/traffic/tickets I acquire on Friday
Gave up the delights of the train ~3yrs ago (I commute in 3 days a week generally) so it'll make a change heading up in a comfortable Swedish auto barge, rather than in my diesel commuter box.
...clearly I reserve the right to have a good old rant about the parking/traffic/tickets I acquire on Friday
Long old day today. Up to Great Ormond St, easy drive, easy parking (permit for single yellow line outside-ish) then a bit of wait with the little chap dashing up and down the corridor pointing out the Giraffe on the wall, the Lion on the door etc.
Met the Consultant Haematologyst, superb detail, calm, matter of fact - just what was needed in fact. Then onto the blood tests... nothing too drastic, a few goes, the nurse got one of the doctors to do it and she managed a great load of blood (for the 6 different test samples) with minimal fuss, good stuff.
The little chap has Haemolytic Anaemia, rare in itself - of this there are four types (can't recall what they are at the moment) and he has the super rare one, of which there have only been 3 other cases that GOS could find.... all recovered, one just with steroids, the others with a somewhat more drastic treatment which we expect the little guy is going to require - he's booked in already for that. Treatment is once a week for four weeks at GOS, on a drip, with Rituximab - my understanding here is that this kills off the B cells (type of while blood cells) which are getting rid of his red blood cells at the moment. He's likely to need further transfusions to keep his Hb count up (well, red cell count and corresponding Hb count) and it's expected to take a few months to get better. Could of course go many ways, but no way of saying at this stage.
How does this feel... well, good actually, we now have a plan, and a known treatment (also used for loads of other things), feels like we're getting somewhere.
First step will be to discuss the wider test results with the consultant at GOS on Monday, then reduce the steroids slowly and test to see what happens - this is where the Rituximab comes in, as that allows him to come off the steroids and therefore avoid all the nasties that go with relatively high doses of them (already has a rounder face due to the fat redistribution). It's possible the reduction in steroids will show he's getting better all by himself, but most likely he'll need to go onto the course of Rituximab and have further transfusions.
First appointment for Rituximab - 1st Apr, SWH Jnr.2's due date... and remain calm!
Just to add to the fun of course, while we were munching on Ikea's finest meatballs - SWH Jnr most pleased with this choice, got a call from the Consultant, Hb count had come back at 2.9... err... well, can't be, so reasonably put down as a duff result and we needed to go to Eastbourne hospital to get a test done this evening... pah, oh well, these things happen. So off we toddled, via a small jam on the A23 with a very smashed (rolled) Mondeo at the front of it (hopefully driver/passengers all ok) and onto a tedious wait with a very over tired toddler - remarkably the registrar on for the night managed to get the sample first go, no fuss (well, lots of crying, but still a great effort) and back home we came, little chap very shattered and straight to sleep. Hb count came in at a more reasonable 9.4 - pretty much where we thought it would be.
Met the Consultant Haematologyst, superb detail, calm, matter of fact - just what was needed in fact. Then onto the blood tests... nothing too drastic, a few goes, the nurse got one of the doctors to do it and she managed a great load of blood (for the 6 different test samples) with minimal fuss, good stuff.
The little chap has Haemolytic Anaemia, rare in itself - of this there are four types (can't recall what they are at the moment) and he has the super rare one, of which there have only been 3 other cases that GOS could find.... all recovered, one just with steroids, the others with a somewhat more drastic treatment which we expect the little guy is going to require - he's booked in already for that. Treatment is once a week for four weeks at GOS, on a drip, with Rituximab - my understanding here is that this kills off the B cells (type of while blood cells) which are getting rid of his red blood cells at the moment. He's likely to need further transfusions to keep his Hb count up (well, red cell count and corresponding Hb count) and it's expected to take a few months to get better. Could of course go many ways, but no way of saying at this stage.
How does this feel... well, good actually, we now have a plan, and a known treatment (also used for loads of other things), feels like we're getting somewhere.
First step will be to discuss the wider test results with the consultant at GOS on Monday, then reduce the steroids slowly and test to see what happens - this is where the Rituximab comes in, as that allows him to come off the steroids and therefore avoid all the nasties that go with relatively high doses of them (already has a rounder face due to the fat redistribution). It's possible the reduction in steroids will show he's getting better all by himself, but most likely he'll need to go onto the course of Rituximab and have further transfusions.
First appointment for Rituximab - 1st Apr, SWH Jnr.2's due date... and remain calm!
Just to add to the fun of course, while we were munching on Ikea's finest meatballs - SWH Jnr most pleased with this choice, got a call from the Consultant, Hb count had come back at 2.9... err... well, can't be, so reasonably put down as a duff result and we needed to go to Eastbourne hospital to get a test done this evening... pah, oh well, these things happen. So off we toddled, via a small jam on the A23 with a very smashed (rolled) Mondeo at the front of it (hopefully driver/passengers all ok) and onto a tedious wait with a very over tired toddler - remarkably the registrar on for the night managed to get the sample first go, no fuss (well, lots of crying, but still a great effort) and back home we came, little chap very shattered and straight to sleep. Hb count came in at a more reasonable 9.4 - pretty much where we thought it would be.
Another day another blood test... the little chap's Hb count is only down to 9 this time (0.4 drop from Fri) which is pretty good going
Lots of screaming and protesting as ever, second attempt got a sufficient sample for a full blood count... minimal chaos this time too, well, I'll limit that comment to just the actual taking of the red stuff, but far from the most traumatic one we've had.
So, no need for a further transfusion at the moment, and we'll see what the consultant up at GOSH says tomorrow (by phone this time) and go from there. Maybe a chance to drop the steroids and then retest next week to see how he responds, before seeing if he's going to proceed with the Rituximab; likelihood is he'll need it.
Anyway, the little guy is doing okay, guessing he's acquired some sort of bug this week as he was actually sick overnight earlier in the week, and hasn't got his usual appetite... nothing too drastic however, so we'll see how it goes. He's doing well with plenty of chilling out interspersed with standard toddler madness Toy cars in the washing machine today, better than the TV remote or one of the phones however (I got them out pre-wash thankfully... the cars did a full cycle and are nice and clean).
Somewhat frustrating experience at the hospital again, where they seem incapable of communicating with GOSH and knowing what's happening next; it's usually me calling and making sure the blood test results have actually been sent.... many haven't. A few phone calls later, initiated by me, we now know he doesn't require further blood tests (I asked them to check that yesterday, blank looks all round today... handy!) and that the Consultant Haematologist from GOSH will be letting us know what's next tomorrow - that's better.
Lots of screaming and protesting as ever, second attempt got a sufficient sample for a full blood count... minimal chaos this time too, well, I'll limit that comment to just the actual taking of the red stuff, but far from the most traumatic one we've had.
So, no need for a further transfusion at the moment, and we'll see what the consultant up at GOSH says tomorrow (by phone this time) and go from there. Maybe a chance to drop the steroids and then retest next week to see how he responds, before seeing if he's going to proceed with the Rituximab; likelihood is he'll need it.
Anyway, the little guy is doing okay, guessing he's acquired some sort of bug this week as he was actually sick overnight earlier in the week, and hasn't got his usual appetite... nothing too drastic however, so we'll see how it goes. He's doing well with plenty of chilling out interspersed with standard toddler madness
Toy cars in the washing machine today, better than the TV remote or one of the phones however (I got them out pre-wash thankfully... the cars did a full cycle and are nice and clean).Somewhat frustrating experience at the hospital again, where they seem incapable of communicating with GOSH and knowing what's happening next; it's usually me calling and making sure the blood test results have actually been sent.... many haven't. A few phone calls later, initiated by me, we now know he doesn't require further blood tests (I asked them to check that yesterday, blank looks all round today... handy!) and that the Consultant Haematologist from GOSH will be letting us know what's next tomorrow - that's better.
First treatment with rituximab at GOSH yesterday. Just me and the little guy went this time as he acquired a little brother on Tuesday morning well timed and not really that little (9lb 10½oz) - more here: http://www.pistonheads.com/gassing/topic.asp?h=0&a...
So, early start with the little chap, riding the end of the rush hour, dumped the car on the single yellows outside GOSH, grabbed a parking permit for the day and parked up in Guilford Street (behind GOSH). Pretty easy drive up from Eastbourne really, I'm more used to avoiding the queue for the Blackwall Tunnel at 0630 three times a week, so this was a refreshing change.
1030 appointment, so in nice and early before anything too busy started. A quick consultation to check I was happy what the treatment was doing and why he was having it, what the side effects may be, and generally to check out the now slightly steroid-chubby toddler.... he was busy wreaking the toy police car in the room, and pointing at the clock (he's somewhat of a fan of clocks, any sort...!).
Cannula insertion in his hand/wrist went okay, 15mins of screaming I guess, but success and sufficient blood for the blood tests needed too. Then an antihistamine to minimise the possible side effects. A wait for that to work, and into the ward/room... 4 beds in a room, TVs, 5mth old and 8yr old leukemia patients (pretty humbling to be honest). Glad we had got a portable DVD player, the drip took probably 4hrs to go in... good little chap just let it happen, concentrating on Winnie The Pooh, The Jungle Book, Grandpa in my Pocket etc... and munching away on left overs from a roast I did the day before, oh, and about a kilo of chopped up grapes and strawberries
Minimal side effects, red face and a bit of a wheeze at one point, although that's just as likely to be due to the fruit consumption(!) Quick snooze on the way home, then an IKEA Croydon meatballs and chips experience (well, he had ~5 chips, I ate the rest) and home.
No noticeable side effects at all today, which is great - so, back up next Friday ready for round 2, and another blood test which will hopefully show the rituximab working and his Hb level stable (it was a fairly normal 10.9 yesterday) - then the steroids can start being reduced.
well timed and not really that little (9lb 10½oz) - more here: http://www.pistonheads.com/gassing/topic.asp?h=0&a...So, early start with the little chap, riding the end of the rush hour, dumped the car on the single yellows outside GOSH, grabbed a parking permit for the day and parked up in Guilford Street (behind GOSH). Pretty easy drive up from Eastbourne really, I'm more used to avoiding the queue for the Blackwall Tunnel at 0630 three times a week, so this was a refreshing change.
1030 appointment, so in nice and early before anything too busy started. A quick consultation to check I was happy what the treatment was doing and why he was having it, what the side effects may be, and generally to check out the now slightly steroid-chubby toddler.... he was busy wreaking the toy police car in the room, and pointing at the clock (he's somewhat of a fan of clocks, any sort...!).
Cannula insertion in his hand/wrist went okay, 15mins of screaming I guess, but success and sufficient blood for the blood tests needed too. Then an antihistamine to minimise the possible side effects. A wait for that to work, and into the ward/room... 4 beds in a room, TVs, 5mth old and 8yr old leukemia patients (pretty humbling to be honest). Glad we had got a portable DVD player, the drip took probably 4hrs to go in... good little chap just let it happen, concentrating on Winnie The Pooh, The Jungle Book, Grandpa in my Pocket etc... and munching away on left overs from a roast I did the day before, oh, and about a kilo of chopped up grapes and strawberries
Minimal side effects, red face and a bit of a wheeze at one point, although that's just as likely to be due to the fruit consumption(!) Quick snooze on the way home, then an IKEA Croydon meatballs and chips experience (well, he had ~5 chips, I ate the rest) and home.
No noticeable side effects at all today, which is great - so, back up next Friday ready for round 2, and another blood test which will hopefully show the rituximab working and his Hb level stable (it was a fairly normal 10.9 yesterday
) - then the steroids can start being reduced. Rituximab part 2 this week, well, that was the plan.
Easy trip up, with Mrs SWH and SWH Jnr.2 in tow as well, the tiny chap did well for 10 days old... totally chilled for the whole thing.
SWH Jnr doing fine in the clinic, putting on a little weight, fat cheeks/stomach thanks to the steroids (and occasional the raging crazy of course). Cannula went straight in first time, good skills from a phlebotomist they had there to do it. Blood test taken, waited around for a bit, then the pre-med time (antihistamine), which went in fine, then the vein collapsed... bugger. Ok, so in with another... and that failed while attempting to tape it down.
Think they were more upset than we were, given the little chap can talk pretty well (for 21mths) and was telling them to, "take it off" and, "no, don't like it"... one last try, in the foot this time, and that failed as well... SWH Jnr suitably unimpressed, at least at GOSH there's minimal faffing about and they just get on with it. He's one of the more difficult they've had to find veins in, and they aim to minimise his stress, which is good... no stabbing about etc!
Reasonable blood test results, well excellent Hb at 11.3 (normal), so a slight delay in the Rituximab schedule then... deemed as perfectly safe by the consultant he's under, so we're up again at some stage this coming week for a 'Pick Line' insertion, another general for the little man, and a line in around the elbow, tracks up a vein and ends up close(ish) to the heart - much like the neck line he had, just not in his neck this time clearly.
Once that's in, any further blood tests or treatment (3 Rituximab sessions remaining) can just be done with minimal fuss... this is good.
Hopefully we can get the steroids to start coming down soon too... the raging crazy moments aren't great, nor is the weight gain, poor chap. Clearly the beneficial effects far outweigh this, given the Hb count is now normal. As a friend put it, at least you can sit on him, can't do that with a 12yr old.... true, still upsetting to have to hold onto him while he calms down, but it's not permanent. However, my cunning negotiation techniques to avoid an upcoming 'moment' are significantly improving. Basically I'd describe it as standard toddler-ness, but there's no upper limit on the stress out that ensues...
So... another trip to GOSH for the line to be put in next week, not what I expected to be using SWH Jnr.2's paternity leave for!
Easy trip up, with Mrs SWH and SWH Jnr.2 in tow as well, the tiny chap did well for 10 days old... totally chilled for the whole thing.
SWH Jnr doing fine in the clinic, putting on a little weight, fat cheeks/stomach thanks to the steroids (and occasional the raging crazy of course). Cannula went straight in first time, good skills from a phlebotomist they had there to do it. Blood test taken, waited around for a bit, then the pre-med time (antihistamine), which went in fine, then the vein collapsed... bugger. Ok, so in with another... and that failed while attempting to tape it down.
Think they were more upset than we were, given the little chap can talk pretty well (for 21mths) and was telling them to, "take it off" and, "no, don't like it"... one last try, in the foot this time, and that failed as well... SWH Jnr suitably unimpressed, at least at GOSH there's minimal faffing about and they just get on with it. He's one of the more difficult they've had to find veins in, and they aim to minimise his stress, which is good... no stabbing about etc!
Reasonable blood test results, well excellent Hb at 11.3 (normal), so a slight delay in the Rituximab schedule then... deemed as perfectly safe by the consultant he's under, so we're up again at some stage this coming week for a 'Pick Line' insertion, another general for the little man, and a line in around the elbow, tracks up a vein and ends up close(ish) to the heart - much like the neck line he had, just not in his neck this time clearly.
Once that's in, any further blood tests or treatment (3 Rituximab sessions remaining) can just be done with minimal fuss... this is good.
Hopefully we can get the steroids to start coming down soon too... the raging crazy moments aren't great, nor is the weight gain, poor chap. Clearly the beneficial effects far outweigh this, given the Hb count is now normal. As a friend put it, at least you can sit on him, can't do that with a 12yr old.... true, still upsetting to have to hold onto him while he calms down, but it's not permanent. However, my cunning negotiation techniques to avoid an upcoming 'moment' are significantly improving. Basically I'd describe it as standard toddler-ness, but there's no upper limit on the stress out that ensues...
So... another trip to GOSH for the line to be put in next week, not what I expected to be using SWH Jnr.2's paternity leave for!
Minor delay to the proceedings due to not being able to get an appointment in for the PICC Line (got the spelling right this time!).... so we're now up to GOSH on Monday for quite a day of it.
Need to be there at 8am, which will be an early start, allowing a couple of hours to get there. SWH Jnr will be nil-by-mouth from 6.30am.... he can have water before that, but nothing else, this could be entertaining to explain to him while negotiating entry to his car seat at 6am. Then we'll have to wait for the timeslot to get him in for a general anaesthetic and the PICC line gets installed. Once that's been done and he's out of recovery.... and de-miffed (he wasn't best impressed last time!), it's Rituximab pt.2 time, along with the pre-medication etc.
Hopefully the steroids reduction can then start too... he's somewhat of a chubby little chap now, this will quickly change once he's off them hopefully, especially considering the rate he dashes about the house/up the road/over the garden.
So, once epic Monday is done, he's up there two more times with 10 day intervals... then we'll see what's next... many a regular blood test I'm suspecting.
Need to be there at 8am, which will be an early start, allowing a couple of hours to get there. SWH Jnr will be nil-by-mouth from 6.30am.... he can have water before that, but nothing else, this could be entertaining to explain to him while negotiating entry to his car seat at 6am. Then we'll have to wait for the timeslot to get him in for a general anaesthetic and the PICC line gets installed. Once that's been done and he's out of recovery.... and de-miffed (he wasn't best impressed last time!), it's Rituximab pt.2 time, along with the pre-medication etc.
Hopefully the steroids reduction can then start too... he's somewhat of a chubby little chap now, this will quickly change once he's off them hopefully, especially considering the rate he dashes about the house/up the road/over the garden.
So, once epic Monday is done, he's up there two more times with 10 day intervals... then we'll see what's next... many a regular blood test I'm suspecting.
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