UPDATE - Seeking docs to play "House" for real
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BM-
You're absolutely right, and I appreciate everyone's patience while I abuse the purpose of Pprune for this. I'm taking all suggestions straight to our docs for their consideration and am not acting on any information on my own. I've already shared several of the e-mails I've recieved with the docs and they're grateful that we're getting extra brainpower to help us.
I'm really here to try to expand the network of knowledge and experience working on the case and, to that end, Ppruners have been absolutely brilliant. I am very grateful to you moderators and the readers for the help. Incidentally, most of this is being done offline by e-mail or PM, so as not to clutter up the bulletin board itself.
Honestly, next time I post here it's gonna be about laser eye surgery and the CAA or something, I swear!
Shawn
You're absolutely right, and I appreciate everyone's patience while I abuse the purpose of Pprune for this. I'm taking all suggestions straight to our docs for their consideration and am not acting on any information on my own. I've already shared several of the e-mails I've recieved with the docs and they're grateful that we're getting extra brainpower to help us.
I'm really here to try to expand the network of knowledge and experience working on the case and, to that end, Ppruners have been absolutely brilliant. I am very grateful to you moderators and the readers for the help. Incidentally, most of this is being done offline by e-mail or PM, so as not to clutter up the bulletin board itself.
Honestly, next time I post here it's gonna be about laser eye surgery and the CAA or something, I swear!
Shawn
I am very sorry to learn of your problems. Medical care in Brazil is variable but even with the limited information you have posted, I really think you should consider going to a developed world childrens' centre. Great Ormond Street has been mentioned and it is excellent but Miami Childrens' is much closer and on par.
Distance diagnosing is inherently difficult and a face to face consultation is always better than pilots on a website asking friends who may be medically qualified!
However, I think it is a bit excessive to consider this a rare or exotic disease at this stage - it is more than likely that a reputable developed world centre can get to the bottom of this and offer you the advice and support you need.
Good luck and feel free to pm me if you need specific advice
Distance diagnosing is inherently difficult and a face to face consultation is always better than pilots on a website asking friends who may be medically qualified!
However, I think it is a bit excessive to consider this a rare or exotic disease at this stage - it is more than likely that a reputable developed world centre can get to the bottom of this and offer you the advice and support you need.
Good luck and feel free to pm me if you need specific advice
Psychophysiological entity
Shawn, thanks for the PM.
Carrots. When I mentioned this to my wife, she recalled a case of a guy that went orange and became extremely ill.
What the mechanism of this illness was she doesn't know.
She's a vegetarian health-food fanatic, and tries to filter out the nonsense when reading these things. This item was from a considerable time ago, but she recalled that it was far from an isolated case.
I would be a little cautious about the sudden removal of betacaratine going in, but I'd feel happier to have it instantly withdrawn than carry on with too much.
Quite what connection there might be to the prime issue I'm not clear about, but it is a matter of, as I said, removing variables. There is just a chance that the carrots are making her ill in other ways.
During this next period, I would wash her without ANY soaps. Don't allow anything to contaminate the utensils. I say this with a certain passion. In my dotage, I've become profoundly allergic to some soaps/washing up liquids. The symptoms extend way beyond swollen red hands. I become 'globally' affected with a multiplicity of symptoms. Again, just one more thing to get out of the equation.
I'm putting feelers out for more information. Despite the fact that there are some good people on this forum, your logic is sound: Just somewhere, there might be someone that has heard of an exact same set of symptoms.
Carrots. When I mentioned this to my wife, she recalled a case of a guy that went orange and became extremely ill.
What the mechanism of this illness was she doesn't know.
She's a vegetarian health-food fanatic, and tries to filter out the nonsense when reading these things. This item was from a considerable time ago, but she recalled that it was far from an isolated case.
I would be a little cautious about the sudden removal of betacaratine going in, but I'd feel happier to have it instantly withdrawn than carry on with too much.
Quite what connection there might be to the prime issue I'm not clear about, but it is a matter of, as I said, removing variables. There is just a chance that the carrots are making her ill in other ways.
During this next period, I would wash her without ANY soaps. Don't allow anything to contaminate the utensils. I say this with a certain passion. In my dotage, I've become profoundly allergic to some soaps/washing up liquids. The symptoms extend way beyond swollen red hands. I become 'globally' affected with a multiplicity of symptoms. Again, just one more thing to get out of the equation.
I'm putting feelers out for more information. Despite the fact that there are some good people on this forum, your logic is sound: Just somewhere, there might be someone that has heard of an exact same set of symptoms.
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Carrots. When I mentioned this to my wife, she recalled a case of a guy that went orange and became extremely ill.
What the mechanism of this illness was she doesn't know.
What the mechanism of this illness was she doesn't know.
Miami Childrens' is much closer.
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Medical care in Brazil
Humonculus,
Thank you very much for writing. I really appreciate it.
I think you might have a valid point, and is one of the reasons I posted here and have been touching base with medical friends. So far, everyone I've talked to seems to corroborate the care and the approach we're getting from the docs here. The response I've had from people here has helped give me confidence in the medical team. We're in a specialist pediatric hospital that deals only with children and they seem to have a pretty full range of departments available for consultation. I'm reasonably confident of their knowledge and expertise, even if some of the facilities are not to my liking (1930s hospital, no air conditioning in most wards, the general paeds ward is unclean, but ICU and Haemo look OK).
I've already started thinking about a flight back to London to GOSH if the hospital here comes up empty in another couple of weeks (Thanks DX!).
LR-
The orange and carrots thing is bugging me. Ana and I agreed tonight that we're backing off on the carrots and papaya to see if that makes a difference. I don't know how long it takes for betacarotine to process out of the system, but I expect her Hgb count is going to be low again in a few days, so we may see something then. At least we stand a chance of eliminating a useless complicator. You make a good point about other contaminants. I'll see what we can do about that. We already sterilise all her eating utensils and bottles, and don't use soap to wash her, but there may be other stuff that we need to look at, too.
To all of you who have responded or are merely following this thread, I wish you a very happy New Year and hope it brings you want you need in life. See you on the other side!
Cheers,
Shawn
Thank you very much for writing. I really appreciate it.
I think you might have a valid point, and is one of the reasons I posted here and have been touching base with medical friends. So far, everyone I've talked to seems to corroborate the care and the approach we're getting from the docs here. The response I've had from people here has helped give me confidence in the medical team. We're in a specialist pediatric hospital that deals only with children and they seem to have a pretty full range of departments available for consultation. I'm reasonably confident of their knowledge and expertise, even if some of the facilities are not to my liking (1930s hospital, no air conditioning in most wards, the general paeds ward is unclean, but ICU and Haemo look OK).
I've already started thinking about a flight back to London to GOSH if the hospital here comes up empty in another couple of weeks (Thanks DX!).
LR-
The orange and carrots thing is bugging me. Ana and I agreed tonight that we're backing off on the carrots and papaya to see if that makes a difference. I don't know how long it takes for betacarotine to process out of the system, but I expect her Hgb count is going to be low again in a few days, so we may see something then. At least we stand a chance of eliminating a useless complicator. You make a good point about other contaminants. I'll see what we can do about that. We already sterilise all her eating utensils and bottles, and don't use soap to wash her, but there may be other stuff that we need to look at, too.
To all of you who have responded or are merely following this thread, I wish you a very happy New Year and hope it brings you want you need in life. See you on the other side!
Cheers,
Shawn
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For anyone who may be interested:
Betacarotene is converted to Vitamin A which is fat-soluble so abrupt cessation will not have any immediate effect.
This seems to be a reasonably comprehensive article on the subject but I'm sure there will probably better ones out there on the internet. A word of caution though about using internet sites for medical information as not all of the information has been properly researched and there are many self-proclaimed experts out there. I am NOT one.
I've had a look at several articles but cannot find any reference to betacarotene being the cause of haemolysis.
I would be a little cautious about the sudden removal of betacaratine going in, but I'd feel happier to have it instantly withdrawn than carry on with too much.
This seems to be a reasonably comprehensive article on the subject but I'm sure there will probably better ones out there on the internet. A word of caution though about using internet sites for medical information as not all of the information has been properly researched and there are many self-proclaimed experts out there. I am NOT one.
I've had a look at several articles but cannot find any reference to betacarotene being the cause of haemolysis.
Psychophysiological entity
Again, although there is no specific mechanism to link the two, I wonder if the presence of something the body objects to might trigger a quite different problem.
This soap thing. If I go to make tea (with filtered water from a dispenser in the fridge door) and the water shows the slightest tendency to bubble, I sling it and rinse the cup again thoroughly to remove the slightest traces of dishwasher soap that may remain. In my case it is because of a possible link with anaphylaxis, but if traces of soap can cause a life threatening allergic reaction, it's possible that it might trigger something else.
Just Occam's razor again.
I came across this a while back. It's interesting in some ways, but I'm not really sure that it's a useful link.
http://jn.nutrition.org/cgi/reprint/13/2/143.pdf
This soap thing. If I go to make tea (with filtered water from a dispenser in the fridge door) and the water shows the slightest tendency to bubble, I sling it and rinse the cup again thoroughly to remove the slightest traces of dishwasher soap that may remain. In my case it is because of a possible link with anaphylaxis, but if traces of soap can cause a life threatening allergic reaction, it's possible that it might trigger something else.
Just Occam's razor again.
I came across this a while back. It's interesting in some ways, but I'm not really sure that it's a useful link.
http://jn.nutrition.org/cgi/reprint/13/2/143.pdf
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Babies and Haemoglobin: Newborn babies arrive in this world with HbF [Foetal Haemoglobin] which is gradually replaced by normal haemoglobin. Prior to birth this form of Hb helps the baby absorb as much oxygen as possible from the mother's bloodstream. Neonates also have a fairly high level of Hb which also aids in this process but because the baby no longer needs such a high level of HbF to help absorb oxygen it starts to get rid of the excess cells. It is the breakdown products of this process, combined with a slightly immature liver, which produce the very common Neonatal Jaundice which resolves quickly and may or may not require phototherapy. The neonate has a lot of growing to do and red blood cell production may not quite keep pace with this growth giving an apparently low Hb. This is compounded by the fact that milk does not contain much iron or folic acid. This is all perfectly normal and usually resolves itself once the baby starts mixed feeding. There isn't usually any need for extra supplements and, to be sensible, none should be given unless prescribed by a doctor.
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It might be worth your while ringing Great Ormond Street, and seeing if you can talk to a haematologist (I'm not sure how easy that will be to do).. Explain the situation and that you are considering bringing her back to the UK and see what they advise.
DXWombat, I'm not sure what you are thinking of regarding the normal loss of Fetal haemoglobin. Your statement is indeed correct, but it shouldn't cause an Hb much below 10.
DXWombat, I'm not sure what you are thinking of regarding the normal loss of Fetal haemoglobin. Your statement is indeed correct, but it shouldn't cause an Hb much below 10.
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TV, don't worry, the post was really just to try to explain the relevance, or rather the lack of it, in the link given in the previous post and the fact that neonates have a different form of Hb from older babies and children. This is not mentioned in that link. I assume that article was written for people with some medical knowledge. My own feeling is that it is a prime example of how those without appropriate knowledge can be seriously misled by information on the internet and in turn can mislead others with perhaps fatal consequences. I should, perhaps have explained myself a bit better.
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That's the truth DX. The first thing that FiL said when I mentioned this to him was "I don't know anything about babies..."
Now, whilst that's obviously not completely true, when it comes to serious illnesses or medical conundrums like this, then you need the real experts and even someone who is highly qualified, but in a slightly different field, might start getting things mucked up. All Drs use caveats if it isn't an area of specific knowledge. (Well, good ones do anyway!)
You wouldn't ask an Airbus pilot about a Boeing. They might know the basics, but unless they know the systems in and out, then things might get confused.
Now, whilst that's obviously not completely true, when it comes to serious illnesses or medical conundrums like this, then you need the real experts and even someone who is highly qualified, but in a slightly different field, might start getting things mucked up. All Drs use caveats if it isn't an area of specific knowledge. (Well, good ones do anyway!)
You wouldn't ask an Airbus pilot about a Boeing. They might know the basics, but unless they know the systems in and out, then things might get confused.
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My apologies DXW, I hadn't looked at the link, and hadn't realised that's what you were referring to - you are absolutely right. The article is a classic one published in 1936 about haemoglobin in babies (under 6 months old), and doesn't have any relevance to this thread.
Agreed with all who are pointing out this is highly specialist stuff, which is why I too am only suggesting expert sources to investigate. I'm also happy to explain any techie stuff you find if needed, as that sort of task is a lot of my job.
Agreed with all who are pointing out this is highly specialist stuff, which is why I too am only suggesting expert sources to investigate. I'm also happy to explain any techie stuff you find if needed, as that sort of task is a lot of my job.
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Sources versus diagnonsis
TV,
And it's the sources that I'm actually looking for, rather than an on-line or e-mail diagnosis because I know how difficult, if not impossible, that kind of thing is. I simply think this situation is just beyond the experience of the staff at the hospital - meaning none of them has personally seen this before. But somewhere, someone has, and it's that person I'm hoping to find eventually; someone who can say "Well, yeah, I saw just this kind of thing about 5 years ago. It turned out to be (insert something dead easy to fix here)". If I show her symptoms around far and wide enough, eventually they'll ring a bell with someone.
On an update note, Anna-Nicole is doing very well, though she can't seem to catch a break. She was just stung by a bee about an hour ago. When you're already traumatised by being stuck with way too many big needles in the hospital, getting stuck by a bee when you're in your own safe play-space just isn't fair! Other than that, though, she's very happy, eating well, and playing all the time.
We're back in on Monday, so more news then. Many thanks again!
Shawn
And it's the sources that I'm actually looking for, rather than an on-line or e-mail diagnosis because I know how difficult, if not impossible, that kind of thing is. I simply think this situation is just beyond the experience of the staff at the hospital - meaning none of them has personally seen this before. But somewhere, someone has, and it's that person I'm hoping to find eventually; someone who can say "Well, yeah, I saw just this kind of thing about 5 years ago. It turned out to be (insert something dead easy to fix here)". If I show her symptoms around far and wide enough, eventually they'll ring a bell with someone.
On an update note, Anna-Nicole is doing very well, though she can't seem to catch a break. She was just stung by a bee about an hour ago. When you're already traumatised by being stuck with way too many big needles in the hospital, getting stuck by a bee when you're in your own safe play-space just isn't fair! Other than that, though, she's very happy, eating well, and playing all the time.
We're back in on Monday, so more news then. Many thanks again!
Shawn
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Oh the poor little girl, 
bee stings aren't nice for anyone. One question for you Pitts - are the doctors using something like Emla cream or other topical local anaesthetic before they stick needles into her? If they aren't, ask them why not and request that they do so in future. The only excuses for not using it are a known, proven allergy to the constituents or an immediately life-threatening situation where time is of the essence. We used it on babies as young as 24 weeks gestation and sometimes less.
TV, as I said, I should probably have explained myself better. Pitts will tell you that the first thing I said was that he should get an immediate referral to GOSH - that became a little more complicated once I learned of his actual, as opposed to PPRuNe, location, but, as I told him, there is absolutely nothing to stop the doctors in Brazil requesting a referral as Anna-Nicole is a British citizen, born in Britain so there are no costing worries.
Pitts, as in any profession the good practitioners recognise their limitations and shout for help sooner rather than later. I hope things are looking up when you go back on Monday.
bee stings aren't nice for anyone. One question for you Pitts - are the doctors using something like Emla cream or other topical local anaesthetic before they stick needles into her? If they aren't, ask them why not and request that they do so in future. The only excuses for not using it are a known, proven allergy to the constituents or an immediately life-threatening situation where time is of the essence. We used it on babies as young as 24 weeks gestation and sometimes less.TV, as I said, I should probably have explained myself better. Pitts will tell you that the first thing I said was that he should get an immediate referral to GOSH - that became a little more complicated once I learned of his actual, as opposed to PPRuNe, location, but, as I told him, there is absolutely nothing to stop the doctors in Brazil requesting a referral as Anna-Nicole is a British citizen, born in Britain so there are no costing worries.
Pitts, as in any profession the good practitioners recognise their limitations and shout for help sooner rather than later. I hope things are looking up when you go back on Monday.
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A few thoughts
I am an anaesthetist and neither a paediatrician nor a haematologist so I can't really help with the diagnosis side...
EMLA is great (or Ametop) but it needs to be on for a good 45 mins to an hour before it makes significant difference. It may or may not be available at the hospital in Brazil (although I would like to think it would be). The biggest trouble we have in the gas board with these creams is it not being on long enough before the child is brought for cannulation.
If you do get a referral to GOSH/Miami kids/Alder Hey or any other paeds centre, give due consideration to how you are going to get there. Many airlines might refuse to fly children in this situation. Your travel insurance may pay for it but it is wise to check. Getting a medical team from the UK to fly a sick child back can be very expensive.
If you are going to fly back, it is worth making sure that the child has been recently transfused (or at least has a recent haemoglobin (last 24 hours or so)) to a level of 10 g/dl (or equivalent). As you will no doubt be aware, the oxygen levels in commercial aircraft are significantly lower than at sea level and with a low Haemoglobin, this will be a significant problem for the child, even if they are fine on the ground. 10g/dl should be enough to fly without needing oxygen (a lot of ladies have Haemoglobins that low for a few days every month).
Hope you get a diagnosis soon and that the treatment is not too arduous.
BtD
I am an anaesthetist and neither a paediatrician nor a haematologist so I can't really help with the diagnosis side...
EMLA is great (or Ametop) but it needs to be on for a good 45 mins to an hour before it makes significant difference. It may or may not be available at the hospital in Brazil (although I would like to think it would be). The biggest trouble we have in the gas board with these creams is it not being on long enough before the child is brought for cannulation.
If you do get a referral to GOSH/Miami kids/Alder Hey or any other paeds centre, give due consideration to how you are going to get there. Many airlines might refuse to fly children in this situation. Your travel insurance may pay for it but it is wise to check. Getting a medical team from the UK to fly a sick child back can be very expensive.
If you are going to fly back, it is worth making sure that the child has been recently transfused (or at least has a recent haemoglobin (last 24 hours or so)) to a level of 10 g/dl (or equivalent). As you will no doubt be aware, the oxygen levels in commercial aircraft are significantly lower than at sea level and with a low Haemoglobin, this will be a significant problem for the child, even if they are fine on the ground. 10g/dl should be enough to fly without needing oxygen (a lot of ladies have Haemoglobins that low for a few days every month).
Hope you get a diagnosis soon and that the treatment is not too arduous.
BtD
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Update
I wanted to take a minute to thank everyone who's responded with information, contacts, and support for us on this.
As it stands, outwardly, our daughter is the picture of health and happiness. INwardly, the doctors suspect she has a condition known as dyserythropoiesis. Her initial bone marrow test results seem to support this theory. I can't even pronounce it, but what it means is that her bone marrow is not producing enough healthy red blood cells that are making it into the bloodstream. Test results due in two weeks will tell us if it is genetic (and, therefore, requires a bone marrow transplant), or if it isn't. If it isn't, we're back to not knowing what has caused this. There is another test out, with results also due in a couple of weeks, looking for a wide range of viruses and infectious diseases. Hopefully either that result turns up something or this mysteriously heals itself and goes into the "Well, I'll be damned..." category.
The hospital here has a relationship with St. Jude's hospital in Memphis and is going to consult with them for a second opinion.
Thanks again for the help. You have no idea how much we have appreciated it. Pprune readers came through in spades for us and restored my faith in humanity.
Many, many thanks
Shawn
As it stands, outwardly, our daughter is the picture of health and happiness. INwardly, the doctors suspect she has a condition known as dyserythropoiesis. Her initial bone marrow test results seem to support this theory. I can't even pronounce it, but what it means is that her bone marrow is not producing enough healthy red blood cells that are making it into the bloodstream. Test results due in two weeks will tell us if it is genetic (and, therefore, requires a bone marrow transplant), or if it isn't. If it isn't, we're back to not knowing what has caused this. There is another test out, with results also due in a couple of weeks, looking for a wide range of viruses and infectious diseases. Hopefully either that result turns up something or this mysteriously heals itself and goes into the "Well, I'll be damned..." category.
The hospital here has a relationship with St. Jude's hospital in Memphis and is going to consult with them for a second opinion.
Thanks again for the help. You have no idea how much we have appreciated it. Pprune readers came through in spades for us and restored my faith in humanity.
Many, many thanks
Shawn
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Thank you for reporting back, Shawn. I've just been looking at St Jude's website and they are clearly heavily involved in research in haematology, and active in the American Society of Haematology.
I'm glad your daughter is well in herself - at least it makes the waiting for results a bit easier. Hang in there! and keep us posted.
I'm glad your daughter is well in herself - at least it makes the waiting for results a bit easier. Hang in there! and keep us posted.
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I'm presuming the haematologists have looked at a blood film to make sure that the red cells are actually a normal size and shape?? As the first conditions which I considered were spherocytosis and thalassaemia. (although in the case of spherocytosis I have seen the whites of the eyes were pigmented, but this would account for the normal bilirubin)
Also is the white count normal?
Have they done a count of reticulocytes (immature red cells)?
Does she have haemoglobinuria? (different from haematuria)
Dyserythropoeisis is usually associated with jaundice and this does usually affect the white of the eyes (abnormalities should be seen on a film, although this wouldnt confirm the condition)
It will be interesting to see the final diagnosis as I am currently doing an MSc in haematology.
Hope all is well and that she is able to come home soon
Also is the white count normal?
Have they done a count of reticulocytes (immature red cells)?
Does she have haemoglobinuria? (different from haematuria)
Dyserythropoeisis is usually associated with jaundice and this does usually affect the white of the eyes (abnormalities should be seen on a film, although this wouldnt confirm the condition)
It will be interesting to see the final diagnosis as I am currently doing an MSc in haematology.
Hope all is well and that she is able to come home soon
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Just been reading over the symptoms again, dont know if its of any relevance any longer, but auto-immune destruction of red-cells could be possible.
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