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Thread: New to intravesical antibiotics

  1. #1

    Question New to intravesical antibiotics

    Hello, I've joined your community in order to better understand health issues for my 2 young adult daughters. They have a rare, complex genetic condition called Pitt Hopkins syndrome. There were ~350 persons identified worldwide with this condition in 2012 when we received our diagnosis. Today there are 10X that number, but most are babies or young children so little is understood re adult issues. Maybe a dozen of the older children/young adults - mainly girls - have significant urinary retention and are diagnosed with neurogenic bladder. My daughters are struggling with recurrent UTIs (>100,000 CU but no fever -- lots of neurological stuff to clue me in, they are non-verbal). Since they're both now developing resistant organisms, we're just starting intravesical treatments and I could use a support community.

    i would love to hear experiences with intravesical neomycin (or genta). Please describe basic protocol and whether it has helped to reduce UTI's. Thank you. PittMom

  2. #2
    Quote Originally Posted by PittMom View Post
    Hello, I've joined your community in order to better understand health issues for my 2 young adult daughters. They have a rare, complex genetic condition called Pitt Hopkins syndrome. There were ~350 persons identified worldwide with this condition in 2012 when we received our diagnosis. Today there are 10X that number, but most are babies or young children so little is understood re adult issues. Maybe a dozen of the older children/young adults - mainly girls - have significant urinary retention and are diagnosed with neurogenic bladder. My daughters are struggling with recurrent UTIs (>100,000 CU but no fever -- lots of neurological stuff to clue me in, they are non-verbal). Since they're both now developing resistant organisms, we're just starting intravesical treatments and I could use a support community.

    i would love to hear experiences with intravesical neomycin (or genta). Please describe basic protocol and whether it has helped to reduce UTI's. Thank you. PittMom
    here is a recent study from u of m.
    https://cuaj.ca/index.php/journal/ar...File/4434/3273

    and a great article from nm. instilling gent is a game changer for many. however, you need to make sure there are no other underlying issues ie- hydronephrosis, stones etc
    http://www.newmobility.com/2015/12/b...ant-solutions/
    Bike-on.com rep
    John@bike-on.com
    c4/5 inc funtioning c6. 28 yrs post.
    sponsored handcycle racer

  3. #3
    I’m assuming you have already been in consultation with urologist who is knowledgeable about neurological conditions?
    as well as infectious disease provider? I hope the above article is helpful to you. Give us update when you can.

    pbr
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  4. #4
    Thank you for this PDF. It is helpful. My older daughter has had a mix of organisms, but the younger one (issues slightly more advanced, so we're starting this with her) predominantly is infected by Kelbsiella so I'm glad to see that reported here. Funny, her doctors chose to instill neomycin rather than gentamicin because she had recently had an Enterobacter infection, and I was told that enterobacter did not respond well to gentamicin... but these authors report a favorable outcome with enterobacter, too. There seems to be less data in the scientific lit on intravesical neomycin.
    Has anyone used neomycin in this fashion? Thanks, PittMom

  5. #5
    YES, my girls have a quality care team at Mass General Hosp in Boston that includes urology, nephrology and infectious disease along with genetics, neurology, etc.. They are neurologically complex by virtue of having Pitt Hopkins Syndrome, though these urinary issues are not yet understood for this syndrome. In many ways, they're likely opposite to many in this forum... they are ambulatory (walk remarkably well for Pitt), but are non-verbal w/significant intellectual disability. Neither can tell me (not even w/augmentative technology) what hurts or what they feel. That's my guessing game. I go by tremor, myoclonus, movement quality, affect and behavior... including sleep or lack there of.

    Has anyone using intravesical gent or neomycin reported neurological changes when on treatment? We're 10 days out and now comfortable doing the procedure, but my daughter has been increasingly manic. That means very little sleep for either of us. Got 3 h total last night (after Rx meds for sleep). Has anyone reported agitation on this procedure?

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