thoughts from Dr's
16 March 2003, 09:35 AM
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My son is passing blood and experiancing no pain or discomfort and has no temperature or sore throat and is his normal self, he was kept in Hospital for nearly a week while they ran tests and monitered his blood pressure and urine. The blood tests came back as normal and they could find no infection in his urine but could not explain why he had cola, red and now pink coloured urine.
After making many trips back to the hospital we have finally managed to get an ultra scan arranged, first the date they gave us was to long of a wait so we pushed and pushed and managed to get it brought forward by a week.
Now I am prepairing myself for the worst as I have searched on the internet and seen what blood in urine with no pain returns.
Could someone in the medical field tell me there thoughts? Is it really a case that the Dr's have no idea?
Also what questions should we be asking once the scan has been done as I would hate to forget to ask something very important.
Should I contact one of the childhood cancer organisations before the Scan to get a list of questions to ask or am I just over reacting and should wait to see what the scan shows. Should my son see a urologist? I have so many things going on in my head that I am finding it hard to know what to do for the best.
After making many trips back to the hospital we have finally managed to get an ultra scan arranged, first the date they gave us was to long of a wait so we pushed and pushed and managed to get it brought forward by a week.
Now I am prepairing myself for the worst as I have searched on the internet and seen what blood in urine with no pain returns.
Could someone in the medical field tell me there thoughts? Is it really a case that the Dr's have no idea?
Also what questions should we be asking once the scan has been done as I would hate to forget to ask something very important.
Should I contact one of the childhood cancer organisations before the Scan to get a list of questions to ask or am I just over reacting and should wait to see what the scan shows. Should my son see a urologist? I have so many things going on in my head that I am finding it hard to know what to do for the best.
16 March 2003, 10:35 AM
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Ask your GP for a list of questions and where the service for the paediatric nephrologist is provided.
GP won't necessarily know that but the local specialist (urologist) must know that!
When Drs don't know the cause, they say "idiopathic" which sounds impressive but literally means, "we haven't a clue" (iatrogenic is different all together and means "caused by a medical procedure" )
Ask to speak to the ward sister of the ward your child was on, they are usually more knowledgeable than the junior Drs on a rotation. The ward sister should have loads of pamphlets about this stuff in non jargon
If after a week of investigation it remains idiopathic "they haven't a clue", I would push for a paediatric nephrologist consultantion. The ultra sound may just show a kidney stone.
BTW does the urine come out dark or just when exposed to light?
Questions I would ask:
1: Proteinuria = protein in urine.
2: High Blood pressure.
3. Auto immune conditions.
4. Infection.
5. Is it genetic/run in families.
6. Should we be worried.
Infact between a good GP and good ward sister you should have enough questions to keep the specialist on their toes and more likely to go for a specialised paediatric nephrologist, a urologist maybe easier to arrange locally in the first instance.
Good luck and remember it is Alan Milburns fault not the Drs
GP won't necessarily know that but the local specialist (urologist) must know that!
When Drs don't know the cause, they say "idiopathic" which sounds impressive but literally means, "we haven't a clue" (iatrogenic is different all together and means "caused by a medical procedure" )
Ask to speak to the ward sister of the ward your child was on, they are usually more knowledgeable than the junior Drs on a rotation. The ward sister should have loads of pamphlets about this stuff in non jargon
If after a week of investigation it remains idiopathic "they haven't a clue", I would push for a paediatric nephrologist consultantion. The ultra sound may just show a kidney stone.
BTW does the urine come out dark or just when exposed to light?
Questions I would ask:
1: Proteinuria = protein in urine.
2: High Blood pressure.
3. Auto immune conditions.
4. Infection.
5. Is it genetic/run in families.
6. Should we be worried.
Infact between a good GP and good ward sister you should have enough questions to keep the specialist on their toes and more likely to go for a specialised paediatric nephrologist, a urologist maybe easier to arrange locally in the first instance.
Good luck and remember it is Alan Milburns fault not the Drs
16 March 2003, 11:18 AM
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That really must be a worry for you, I hope it all turns out to be alright.
It seems as though you have to start thumping the table and making a nuisance of yourself to get things done on the NHS these days. You may have to start jumping up and down to get the right sort of service.
Les
It seems as though you have to start thumping the table and making a nuisance of yourself to get things done on the NHS these days. You may have to start jumping up and down to get the right sort of service.
Les
17 March 2003, 10:17 AM
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A few more bits of background.
Family history of arterial disease
High history of cancer in quite a few paternal and maternal family members and of childhood cancer
On admition to the ward, was started on a course of antibiotics but this was stopped once no infection was found.
We was prescribed some Bayer urine strips to take home, obtaining these was a right farce.
his blood is always a +3 but no clots visable
protein is +1
one other we measure but cant remember from top of my head
Some inflamation on one Kidney
Urine is dark at the start, mid and end of stream and cloudy when held up to the light but less cloudy than when we first noticed it.
Seeing the GP later today so will ask them for some questions to ask. Thanks for taking the time and for the pointers HP.
Family history of arterial disease
High history of cancer in quite a few paternal and maternal family members and of childhood cancer
On admition to the ward, was started on a course of antibiotics but this was stopped once no infection was found.
We was prescribed some Bayer urine strips to take home, obtaining these was a right farce.
his blood is always a +3 but no clots visable
protein is +1
one other we measure but cant remember from top of my head
Some inflamation on one Kidney
Urine is dark at the start, mid and end of stream and cloudy when held up to the light but less cloudy than when we first noticed it.
Seeing the GP later today so will ask them for some questions to ask. Thanks for taking the time and for the pointers HP.
17 March 2003, 11:24 AM
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Had a quick look for you (I'm no doctor), found the following.
Q: My child has red coloured urine, What does it signify?
A: Red coloured urine suggestive of blood in the urine. However, every pink/red/brown coloured urine not be due to blood in urine. Ingestion of coloured sweets, beetroot, drugs (Rifampicin, anantituberular drug causes orange coloured urine; Multivitamins may cause yellowish colour of urine), hemoglobin or myoglobin can cause red urine.
The colour of the urine may give a clue to the cause:-
1.Cola coloured urine is suggestive of a kidney disease. It may be associated with puffiness of eyes and increased blood pressure.
2. Bright red coloured urine, especially if seen at the end of urination is due to bleeding from the urinary bladder or from lower urinary tract.
Q: How do you determine that the red coloured urine is due to presence of blood in urine?
A: A simple urine test can determine the cause of red urine. Either a microscopic examination of the urine in a pathology laboratory or a strip test can determine whether red urine is due to bleeding. However, the strip test may also be positive in case of presence of myoglobin or hemoglobin in urine. Red urine due to other causes will have a negative strip test.
Hence, the best way to determine the cause would be a simple urine examination under the microscope.
Q: What are the causes of blood in urine?
A: The presence of blood in urine signifies bleeding from the urinary system. It can be from anywhere right from kidneys ureters (tubes that connect kidneys to the urinary bladder), urinary bladder and the urethra (tube that transmits urine from the bladder to the urinary opening on the body). Rarely, bleeding may be due to a bleeding disorder (eg Hemophilia etc).
Q: How do you treat a patient with red urine?
A: First and foremost, it is necessary to determine the cause of bleeding for which a battery of tests may be required. Patient’s urine may be sent for examination and blood may be collected for a few tests (e.g ASO time, serum C3 , HbsAg, urine culture etc) depending upon the clinical features which the patient presents with sometimes, a 24 hour urine sample may be required, where urine passed over 24 hours is collected in a container and tested. Depending upon the cause, an ultrasound of the kidneys and pelvis maybe required.
Some causes of blood in urine (also called Hematuria) are transitory like Acute post infectious glomerulonephritis, renal stones etc which subside after sometime. Other conditions may lead to persistent bleeding, which may not be visible to the naked eye, but can be detected by microscopic examination. Hence, a urine examination may be done every monthly till at least, last 3 samples of urine are normal.
The treatment of blood in urine varies with the cause. In acute post infectious glomerulonephritis, the treatment is the complication bed rest, antihypertensives to lower the B.P and antibiotics. Acute pyelonephritis may require intravenous antibiotics.
Q: If my child has persistent bleeding, what can be done?
A: If your child has visible bleeding for more than 2-4 weeks after the 1st episode or has persistent microscopic bleeding for more than 12 months, then a kidney biopsy may be required to determine the cause and further management. In case, the child has recurrent episode of bleeding, then also a kidney biopsy is required. Family members may also be screened for blood in urine and hearing tests maybe done. In addition, further blood tests may be required. However, biopsy can confirm most of the diseases. If biopsy is normal and there is a familial tract of bleeding, then it has a good prognosis.
Rarely, tests like IVP& cystoscopy maybe required for the diagnosis. Again,the treatment depends upon the cause of bleeding?
Q: Since, my child has persistent bleeding in urine, won’t he require an vitamin or iron supplements?
A: Microscopic bleeding of long standing does not usually lead to a low hemoglobin or decreased vitamin stores, hence the child may not require any hematinics, tonic or vitamin supplements.
Q: What precautions can we follow to ensure good health of our child?
A: A child with acute episode of bleeding may require bed rest till the episode tides over (again depending upon the cause). However, a child with persistent bleeding can usually lead a normal life till complications of the kidney disease do not develop.
Might not give you any definitive answers, but may give a few more clues, I think the BIG thing here is to start getting some action, don't be fobbed off (it's happened to many people I know - to their expence !), get more than one opinion too !!.
Good luck,
Q: My child has red coloured urine, What does it signify?
A: Red coloured urine suggestive of blood in the urine. However, every pink/red/brown coloured urine not be due to blood in urine. Ingestion of coloured sweets, beetroot, drugs (Rifampicin, anantituberular drug causes orange coloured urine; Multivitamins may cause yellowish colour of urine), hemoglobin or myoglobin can cause red urine.
The colour of the urine may give a clue to the cause:-
1.Cola coloured urine is suggestive of a kidney disease. It may be associated with puffiness of eyes and increased blood pressure.
2. Bright red coloured urine, especially if seen at the end of urination is due to bleeding from the urinary bladder or from lower urinary tract.
Q: How do you determine that the red coloured urine is due to presence of blood in urine?
A: A simple urine test can determine the cause of red urine. Either a microscopic examination of the urine in a pathology laboratory or a strip test can determine whether red urine is due to bleeding. However, the strip test may also be positive in case of presence of myoglobin or hemoglobin in urine. Red urine due to other causes will have a negative strip test.
Hence, the best way to determine the cause would be a simple urine examination under the microscope.
Q: What are the causes of blood in urine?
A: The presence of blood in urine signifies bleeding from the urinary system. It can be from anywhere right from kidneys ureters (tubes that connect kidneys to the urinary bladder), urinary bladder and the urethra (tube that transmits urine from the bladder to the urinary opening on the body). Rarely, bleeding may be due to a bleeding disorder (eg Hemophilia etc).
Q: How do you treat a patient with red urine?
A: First and foremost, it is necessary to determine the cause of bleeding for which a battery of tests may be required. Patient’s urine may be sent for examination and blood may be collected for a few tests (e.g ASO time, serum C3 , HbsAg, urine culture etc) depending upon the clinical features which the patient presents with sometimes, a 24 hour urine sample may be required, where urine passed over 24 hours is collected in a container and tested. Depending upon the cause, an ultrasound of the kidneys and pelvis maybe required.
Some causes of blood in urine (also called Hematuria) are transitory like Acute post infectious glomerulonephritis, renal stones etc which subside after sometime. Other conditions may lead to persistent bleeding, which may not be visible to the naked eye, but can be detected by microscopic examination. Hence, a urine examination may be done every monthly till at least, last 3 samples of urine are normal.
The treatment of blood in urine varies with the cause. In acute post infectious glomerulonephritis, the treatment is the complication bed rest, antihypertensives to lower the B.P and antibiotics. Acute pyelonephritis may require intravenous antibiotics.
Q: If my child has persistent bleeding, what can be done?
A: If your child has visible bleeding for more than 2-4 weeks after the 1st episode or has persistent microscopic bleeding for more than 12 months, then a kidney biopsy may be required to determine the cause and further management. In case, the child has recurrent episode of bleeding, then also a kidney biopsy is required. Family members may also be screened for blood in urine and hearing tests maybe done. In addition, further blood tests may be required. However, biopsy can confirm most of the diseases. If biopsy is normal and there is a familial tract of bleeding, then it has a good prognosis.
Rarely, tests like IVP& cystoscopy maybe required for the diagnosis. Again,the treatment depends upon the cause of bleeding?
Q: Since, my child has persistent bleeding in urine, won’t he require an vitamin or iron supplements?
A: Microscopic bleeding of long standing does not usually lead to a low hemoglobin or decreased vitamin stores, hence the child may not require any hematinics, tonic or vitamin supplements.
Q: What precautions can we follow to ensure good health of our child?
A: A child with acute episode of bleeding may require bed rest till the episode tides over (again depending upon the cause). However, a child with persistent bleeding can usually lead a normal life till complications of the kidney disease do not develop.
Might not give you any definitive answers, but may give a few more clues, I think the BIG thing here is to start getting some action, don't be fobbed off (it's happened to many people I know - to their expence !), get more than one opinion too !!.
Good luck,
17 March 2003, 01:38 PM
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Well so much for my sons GP, they did not give me a list of questions to ask. All they would say is that sometimes blood is present in urine and clears up on its own. The Kidney output is normal.
Said they may want to do other tests at the Hospital such as inserting a tube into his bladder to look at the wall
I just hope nothing nasty is found in his bladder.
When I asked about seeing a pediatric nephrologist I dont think they knew what one was and I had to say urologist, not happy and not impressed and will be changing GP soon.
How do I go about finding a good GP is it just trial and error?
Just wish I could afford private healthcare.
What is it they say about a parents intuition, I just hope that I am wrong.
Said they may want to do other tests at the Hospital such as inserting a tube into his bladder to look at the wall
I just hope nothing nasty is found in his bladder.When I asked about seeing a pediatric nephrologist I dont think they knew what one was and I had to say urologist, not happy and not impressed and will be changing GP soon.
How do I go about finding a good GP is it just trial and error?
Just wish I could afford private healthcare.
What is it they say about a parents intuition, I just hope that I am wrong.
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17 March 2003, 02:30 PM
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Good GP's are hard to find, best way is word of mouth, but in fairness to them they can't be good at everything. I think though they have to specialise in something at med school, so try and find one which has specialised in something useful to you, in this case pediatrics or renal.
DON'T let it drop though keep on pushing and asking questions, be in their faces the whole time !!!.
There is nothing more important than your own childs life ..
IMHO..
DON'T let it drop though keep on pushing and asking questions, be in their faces the whole time !!!.
There is nothing more important than your own childs life ..
IMHO..
18 March 2003, 03:01 PM
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Update for those who have given advice and offered suport. Scan was done today and no lumps found in the bladder or kidneys and kidney size is normal.
Been told to moniter urine over the next few weeks and record the results. Will have weight and blood pressure checked twice a week untill the next apointment. If there is no improvment then we will be referred to Kings. I am so glad that no lumps where found but still concerned that we have no diagnosis. I am hoping that it clears itself up in the next few weeks and is not renal disease. Thank you to everyone who has helped.
Been told to moniter urine over the next few weeks and record the results. Will have weight and blood pressure checked twice a week untill the next apointment. If there is no improvment then we will be referred to Kings. I am so glad that no lumps where found but still concerned that we have no diagnosis. I am hoping that it clears itself up in the next few weeks and is not renal disease. Thank you to everyone who has helped.
19 March 2003, 01:22 AM
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Kings is good for paediatric nephrology in conjunction with Guys
Infact the Dulwich part of Kings was a world leader in kidney stuff when I was training (cough, 18 years ago
)
Well what do you know I am now a senior tutor for GKT = Guys Kings and St Thomas' medical schools.
Great organisation
Remember it is Milburn's fault not the Drs and Nurses.
Very good news that there is no "mass" on scan
i.e. tumour far less likely
Infact the Dulwich part of Kings was a world leader in kidney stuff when I was training (cough, 18 years ago
)Well what do you know I am now a senior tutor for GKT = Guys Kings and St Thomas' medical schools.
Great organisation
Remember it is Milburn's fault not the Drs and Nurses.
Very good news that there is no "mass" on scan
i.e. tumour far less likely
19 March 2003, 01:29 AM
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BTW medical students don't specialise, GP trainees don't specialise to get their GP badge, however if a juniour Dr wants to, they can spend more time training in a speciality without becoming an expert e.g. more psychiatry (good) or more dermatology (boring but good for private income for the GP ).
If desperate to find a good GP go to Citizens advice to see who doesn't get complained about!
Word of mouth best, took me 18 years in London to find a GP to transfer to from Hertfordshire as I am not generally impressed with London GPs......my current one is a Saint
).If desperate to find a good GP go to Citizens advice to see who doesn't get complained about!
Word of mouth best, took me 18 years in London to find a GP to transfer to from Hertfordshire as I am not generally impressed with London GPs......my current one is a Saint
19 March 2003, 06:11 PM
#13
Bubblegum
The Christmas before last I went through something similar, and have a family history of glomerulonephritis plus kidney stones. I I did, however have some pain and fever, as you say this can be better news than blood and no pain, and ultimately it turned out to be a kidney stone, but a transparent one that didn't show up on the ultrasound scan. It was only after a CAT scan that they found it.
I had all my treatment at the London Bridge Hospital (privately) but the specialists are from the Kings and Guys Trust. I was very impressed by these guys, especially their willingness to turn things around very quickly, and would recommend Tim O Brien, Urologist, and Ian Abbs, Nephrologist.I will happily pass on phone numbers off line if you want them for a second opinion.
Fingers crossed it's just one of those harmless kids things designed to terrify parents...
John
The Christmas before last I went through something similar, and have a family history of glomerulonephritis plus kidney stones. I I did, however have some pain and fever, as you say this can be better news than blood and no pain, and ultimately it turned out to be a kidney stone, but a transparent one that didn't show up on the ultrasound scan. It was only after a CAT scan that they found it.
I had all my treatment at the London Bridge Hospital (privately) but the specialists are from the Kings and Guys Trust. I was very impressed by these guys, especially their willingness to turn things around very quickly, and would recommend Tim O Brien, Urologist, and Ian Abbs, Nephrologist.I will happily pass on phone numbers off line if you want them for a second opinion.
Fingers crossed it's just one of those harmless kids things designed to terrify parents...
John
25 March 2003, 04:36 PM
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Update for those who have asked.
The Docs at Hospital have spoken to Great Ormond St and they think it is idiopathic nephrotic syndrome, which is basically an autoimune condition where the blood attacks the kidneys. Currently on 60mg of prednisone daily to see if the protein goes away (which he is doing his best not to take, the little angel ) if it has not gone for at least a 3 day period within 2 weeks then it is biopsy time But the urines visable colour is now yellow, so we are hopefull 
that this is what it is.
We have heard that this is quite a common condition which kids usually grow out of by the time they are teenagers, hope we dont have to wait that long, as the long term affects of steroids could have very bad sideaffects.
Thanks for the help when I needed it, as it has been really tough for us lately. I hope that the kind people who responded will know just how much I have valued your help and support.
The Docs at Hospital have spoken to Great Ormond St and they think it is idiopathic nephrotic syndrome, which is basically an autoimune condition where the blood attacks the kidneys. Currently on 60mg of prednisone daily to see if the protein goes away (which he is doing his best not to take, the little angel
) if it has not gone for at least a 3 day period within 2 weeks then it is biopsy time But the urines visable colour is now yellow, so we are hopefull that this is what it is. We have heard that this is quite a common condition which kids usually grow out of by the time they are teenagers, hope we dont have to wait that long, as the long term affects of steroids could have very bad sideaffects.
Thanks for the help when I needed it, as it has been really tough for us lately. I hope that the kind people who responded will know just how much I have valued your help and support.
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