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Chronic ear infection. Got nodular appearances on different parts of body. What is causing these nodes?

O.k. are you ready BTW my daughter s now 20. She has several small nodular appearances on her kidneys.. discovered at age 10. We also dicovered, she has a granular appearances in both her retinas. She too had several cases of pheumonia from 6 months until she was 5. She has had chronic ear infections her whole life with 18 sets of bilaterial tubes . Since Oct. 2012 two cultures showed Archomobacter Xylosxidans and a 24 =round of 1 x daily Entapenem via PICC line did not affect the brown drainage. We have just gotten test results on the third culture showing that she has a heavy gowth Burkholderia Cepacia in her left ear. She has had a mastodictomy when MRI results had shown small noduals in both ears near the choeculis. This was 5 years ago. When the doctor opened up the left ear, what he saw was granular in nature and opted not to open the right ear.... I have had her in a NIH study and they pointed me towards Cohen`s syndrome . That was six years ago. Which does have interemitant nueropenia as a common facter. Now with the recent diagnosis of Burkholderia Cepacia, I am scared it will find it way into her blood stream. She is known to touch her ear then pick at her skin if she has any kind of scab and or bug bite . I have been keeping coton balls as a barrier but she is going to itch it when it is draining so much. She has a 50 IQ... I really have a bad feeling about the bacteria. I hope I am not overreacting. Is the bacteria easy to transmit from the ear to her blood? It does seem asy to catch if it is present. There was not much to be found concerning the batceria being in the ear. When researching on-line I was pointed towards Granulomatous. That is why I have thought back to where all of this seemed to piece together. All the differnt disiciplines could not pin point what the nodular / granular apperances were. Which kind of Dr. would test for granulomatos affecting the accumalation of cells? Is there a web address you would recommend to study the bacteria being in her ear and is there a site that could help me better understand the granular apperances in the different parts of her body?
Asked On : Fri, 25 Jan 2013
Answers:  1 Views:  31
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  User's Response
Thank for asking to HCM
I really appreciate your concern for your daughter, and sorry for her multiple medical issues, the granulomatous disease in fact highly genetic in origin and that can takes place in where in body with any tissue this is nothing but the accumulation of cells in irregular manners , this may long last with great uncertainty, the progression could be slow or may stops, the prognosis is fair to good with medical management, chances of secondary infections are high, take care of your daughter and have nice day.
Answered: Wed, 1 Jan 2014
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