AUTISM & ASPERGER'S SYNDROME EXPERT FORUM
Autistic & Kidney Failure

Autistic & Kidney Failure

I have a 14 year old autistic stepdaughter that caught a bad virus (diarrhea & vomiting) and is on her 10th day of hospitalization with KIDNEY FAILURE, due to the virus and her being so sick. She has produced no urine. Doctors are giving her kidneys another week to produce urine on their own, if not, they will then do a kidney biopsy. Due to her autism and aggressive behavior, she is sedated and has been sedated the whole time. To help you understand ALITTLE bit of her aggressiveness... she HATES routine doctor visits, will NOT TOLERATE even a band-aid on her and has never allowed nurses to take her bood pressure. SO right now, we are facing her having to come home on dialysis to keep her alive.  Which is still not a good thing, because she will tear her catheder out and bleed to death.  

What it is I want to know, is there ANY HOSPITAL and/or DOCTOR that specializes in AUTISM and KIDNEY Failure, ANYWHERE in the US???

PLEASE HELP!!!!  and PLEASE KEEP MORGAN IN YOUR PRAYERS!
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This sounds like a very serious problem and I certainly send my best wishes for a speedy resolution to it.  That said, renal specialists are typically not overly familiar with autism and autism specialists are not typically familiar with kidney problems, though an MD that specializes in developmental disorders should bring together knowledge in both areas.  The best pediatric hospital program that deals with helping children tolerate medical procedures is the Kennedy Krieger Institute at Johns Hopkins Medical School.  In my opinion, Dr. Keith Slifer is the foremost expert in this area. Here is a link to his faculty page:

http://www.kennedykrieger.org/kki_staff.jsp?pid=1816

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As I have a child with sensory integration disorder and autism I can only imagine how difficult the prospect of regular medical interventions must seem.
Follow the advice and link above.
Make sure that you don't agree to any procedures at home or any environment that you feel your child cannot cope with.  If sedation during any treatment is the only option take it and make sure that medical staff are aware of the reasons why that is the only option.  Make sure any consultants regarding the kidney issue are in contact with the a professional who knows your child well so that they can explain the issues around both autism and sensory difficulties.
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