Author Topic: Bladder Reflux: Causes, Cures & Treatment Options  (Read 10199 times)

Offline mykidsmom

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Bladder Reflux: Causes, Cures & Treatment Options
« on: December 20, 2007, 06:14:56 PM »
I have read through what I could here on bladder reflux and haven't found much.  I saw one person mention their dd had it but not much more then that.

It appears that my 6yr old dd has bladder reflux.  She was hospitalized in October for a kidney infection that went into her blood.  Since then she's only been 4 days without an infection.  On the 28th they will be doing a follow-up ultrasound to see if her kidneys are still swollen.  When she was in the hospital they were so swollen they couldn't believe it.  If they are, they will want to test her for reflux (which we're pretty sure she has).  My sister had it when she was little and had to have surgery for it.  It's a congenital issue.

My question is this - either fix for this isn't pretty.  She appears to be around a stage 2 or 3 reflux.  To treat that they normally put a child on prophylactic antibiotics for up to 5yrs until the ureters lengthen and the reflux heals.  The other option is an outpatient surgery that puts something called "deflux" in the ureter that creates a "new" valve so the urine cannot go back up into the kidneys.  This deflux stuff is made of teflon.  That can't be good for the body either.   My sister had stage 5 reflux and had to have a pig valve put in her ureters.

On the natural side we have had her drinking whole cranberry juice, I've been doing GSE daily on top of the antibiotics they've had her on.  She's on a mega probiotic to try and protect her gut.  Nothing is kicking these infections.  She never had anything prior to this infection.  No antibiotics, just normal colds.  Bladder issues tend to run on my side of the family.

Do you all have any suggestions?  If faced with this decision, what are your thoughts on natural vs. allopathic (since I can't seem to find a natural)?  The concern is long term kidney damage (which she may already have since her kidneys are so swollen).  Besides praying about it, my husband wondered if any of you have dealt with this and what you did. 

Thanks for any info you all might have.

patti
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline prairiechild

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Bladder Reflux: Causes, Cures & Treatment Options
« Reply #1 on: December 21, 2007, 02:53:58 AM »
Are those the only two options? Is there a reason she couldn't have the same surgery your sister had with the pig valve placement? The teflon or antibiotic options don't sound so good. Do they have to wait for stage 5 reflux?

My friend is about 35 and is now on dialysis every night due to end stage kidney failure caused by reflux. She knew about the reflux and was on meds for hypertension caused by kidney damage. She couldn't afford the lab tests and didn't go to the dr for several years then became sick and they found the ESRD.

She is on the list for a kidney transplant but if she gets it, she will have to be on meds for the rest of her life that cost several thousand dollars a month.

She really wishes she would have had corrective surgery as a child.

Offline mykidsmom

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Bladder Reflux: Causes, Cures & Treatment Options
« Reply #2 on: December 21, 2007, 07:19:13 AM »
Are those the only two options? Is there a reason she couldn't have the same surgery your sister had with the pig valve placement? The teflon or antibiotic options don't sound so good. Do they have to wait for stage 5 reflux?

My friend is about 35 and is now on dialysis every night due to end stage kidney failure caused by reflux. She knew about the reflux and was on meds for hypertension caused by kidney damage. She couldn't afford the lab tests and didn't go to the dr for several years then became sick and they found the ESRD.

She is on the list for a kidney transplant but if she gets it, she will have to be on meds for the rest of her life that cost several thousand dollars a month.

She really wishes she would have had corrective surgery as a child.


Right now, those are the two options I can find.  I've been researching like crazy.  They will not do the valve replacement unless someone is a stage 5.  At a stage 4 they will take the ureters off the kidneys and reattach them correctly.  Up to that point, antibiotics is the option they usually use.  I found out about the deflux by researching things out.  I know, both options are yucky.  That's why we're trying to see if anyone knows of anything else. 

1ofeach, that is an excellent point about the water.  Unfortunately, with reflux that doesn't seem to effect it.  Reflux is caused by the valve that keeps the urine from backflowing into the kidneys.  No matter how much she drinks or in what order, the urine backflows.  We've been trying to have her go potty frequently to keep her bladder from being overall causing more urine to back up but that doesn't seem to be helping either.   :-\

Anyways, thanks for the input.

patti
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline prairiechild

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Bladder Reflux: Causes, Cures & Treatment Options
« Reply #3 on: December 21, 2007, 08:27:33 AM »
That sounds like the insurance may be dictating the treatment. Statements like "we can't do the surgery until stage 5" usually translate into "your insurance will not pay for it unless she is in stage 5.

You may have already done this, but I would probably sit down with the urologist and express your concern about complications of long-term antibiotic therapy and also teflon in the body. See if there are any alternatives.

Especially since this is almost guaranteed to worsen unless the structure is corrected.

Offline Mom2four

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Bladder Reflux: Causes, Cures & Treatment Options
« Reply #4 on: December 21, 2007, 09:56:47 AM »
I agree that it is probably an insurance thing, unfortunately that is the way our health care system works!  :P  (My husband is in the health care field, so I say this from personal experience).  I also can say from personal experience, that if your doctor is willing to stand up for you, you can get it done and paid for by your insurance.  Assuming of course, that is the reason they won't do it.  I know nothing about kidney reflux, though I do know someone whose 4 year old in currently being diagnosed with it.  If it is the best option for your daughter, as opposed to long term antibiotics, which would weaken her immune system, cause yeast issues, etc.....  I would keep after them until someone listens. 

Offline hi_itsgwen

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Re: Bladder Reflux: Causes, Cures & Treatment Options
« Reply #5 on: July 17, 2009, 05:00:07 AM »
Patti,
My cousin just had a baby that is diagnosed with kidney reflux at a week old.  Do you have any suggestions or ideas for treatment options?  What did you guys end up doing, and how is your daughter doing?

~Gwen
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Offline mykidsmom

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Re: Bladder Reflux: Causes, Cures & Treatment Options
« Reply #6 on: July 17, 2009, 05:38:36 AM »
Patti,
My cousin just had a baby that is diagnosed with kidney reflux at a week old.  Do you have any suggestions or ideas for treatment options?  What did you guys end up doing, and how is your daughter doing?

~Gwen


Gwen,

My dd ended up not having urinary reflux.  She was having kidney/bladder infections caused by chronic constipation (caused by poor digestion and food allergies).  SO - she's doing great.  We've got her on lots of enzymes, etc. and we don't have any issues anymore.  It would be VERY abnormal for a 6yr old (she's 8 now) to get reflux and I knew that so I just kept searching.

As for baby - yes!  There is something they can use besides antibiotics and it WILL work.  Reflux in a baby generally takes 2yrs to outgrow.  Sometimes 3.  They can give her 1/2tsp. of d-mannose daily 3x's a day (basically with each meal).  It's tasteless so they can maybe put it on mom's breast before feeding or something like that.  Maybe mix with water and put it in an eye dropper and then drop it into baby's mouth.  I think this method would be easier.  They should buy many many bottles of this and stock up to get through the next year or two.  Who knows if it will be available this time next year.   :-\  Mannose comes in capsules and powder.  They should get the powder.  The cheapest I found it was Luckyvitamin.com and it's by NOW.

If they do this, baby should never get an infection.  IF she does, they can up the dose to 1 tsp 3x's a day and it will kill the infection.  We have avoided abxs now with my dd for two years with the mannose.  We used it daily for 6 months until we figured out what was wrong with my dd. 

BTW, did they actually do a reflux test on this baby or did baby just get a UTI and they told them he/she had reflux?  Because honestly, I have known several babies that have gotten UTI's and they just never figured out why.  So I think it's important that they actually did the cystoscopy to diagnose this or I wouldn't trust the diagnosis.   Also, if they didn't do a cystoscopy and this baby is only a week only I would NOT trust that diagnosis. 

hth

patti
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline hi_itsgwen

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Re: Bladder Reflux: Causes, Cures & Treatment Options
« Reply #7 on: July 17, 2009, 04:00:50 PM »
Thank you so much for your response and advice Patti!

I am not sure what testing was done for the 'dianosis', but the family updated today to say that the baby has Group B strep in addition to the supposed kidney reflux.  She was hospitalized with a fever just 2 days ago, and they are just getting initial testing back.  The good news is that she's eating and soiling diapers regularly at this point.  They want her to stay in the hospital for 10 days with intravenous antibiotics for 'observation'.  I just cringe to think of what it is doing to her tiny little self.

She was born at home, and has 4 older brothers and sisters, and I don't think the family has insurance.  I feel so badly for them, and I know that they feel helpless and just want to know what's wrong with her.  I will pass along your suggestion for the D-Mannose.

Thanks again!
~Gwen
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Offline mykidsmom

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Re: Bladder Reflux: Causes, Cures & Treatment Options
« Reply #8 on: July 17, 2009, 07:45:33 PM »
Glad to help.  If you get an update, please let me know.  What a hard time.

patti
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline dkhawk

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Re: Bladder Reflux: Causes, Cures & Treatment Options
« Reply #9 on: January 11, 2010, 04:34:07 PM »
That sounds like the insurance may be dictating the treatment. Statements like "we can't do the surgery until stage 5" usually translate into "your insurance will not pay for it unless she is in stage 5.

You may have already done this, but I would probably sit down with the urologist and express your concern about complications of long-term antibiotic therapy and also teflon in the body. See if there are any alternatives.

Especially since this is almost guaranteed to worsen unless the structure is corrected.

As far as I know, they won't do the surgery if it is not Stage 5 because the chances of it healing itself by age 7 is likely, saving the child an unnecessary surgery.  I am trying to research the antibiotic issue now since my child gets an infection within days of stopping them, and ends up hospitalized.

Offline hi_itsgwen

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Re: Bladder Reflux: Causes, Cures & Treatment Options
« Reply #10 on: January 11, 2010, 04:56:12 PM »
To update on my cousin's baby:
She ended up with an infection that spread to her bloodstream, so they decided surgery was the best option for her.  She seems to be doing great, though they've not yet had the follow up ultrasound...I think another couple of months before that is due to check healing/structure.
Personally, I think this was a blessing for their family, as it is a permanent fix, and she won't be living on antibiotics.

dkhawk...check two posts up for Patti's recommendation for using D-Mannose as a preventative for infections. 
Come see me at www.gwens-nest.com
♥ Check out our family favorite recipes, funny kid stories, natural remedies and other creative and fun stuff.