Sunday, 13 December 2015


This is Miss Katie's wrist.  It doesn't look that bad in the photo.  She has another staph infection.  When she's upset she bangs her wrists against her mouth.  The calluses and scars have built up over time.  She never used to do this.  You can see old bruises on her wrist.

She also has a callus built up on her forehead, except right now it's a huge sore because she hit her head so hard that she split the skin.  When she's upset she bangs her head against the floor or the wall, or another person's head if need be.  Katie gets upset a lot.  She is chronically anxious.  We tried weed and we have tried anti-depressants with only limited success. 





Katie also won't keep her fingers out of her nose.  She doesn't pick her nose, she just sticks her fingers up her nose all the time.  I think that's how she's reinfecting herself. This is either the fourth or fifth staph infection this year.  We tried decolonization which worked for about five months but now she has another infection. 

She saw a doctor at a walk in medical clinic on Friday who took a swab and put her on oral antibiotics.  I find walk in medical clinics to be quite useless but her staff had already taken Katie there.  The doctors in those clinics don't appear to really care that much, at least that's how I feel.  Anyway, she got started on the oral antibiotics and they are slowly working.  She had a fever Friday and Saturday but the fever is gone now thank goodness.  The swelling and redness are worse but it's not spreading.  It is however painful.  Katie doesn't usually complain of pain but she does get very grumpy. 


Infection spreading up her arm prior to antibiotics.

 


I did some research on recurrent staph infections.  Decolonization is not overly effective, especially with non cooperative patients, a category which Katie would definitely fall into.  She won't keep her fingers out of her nose and has small abrasions on her skin constantly from her self abuse.  I'm not really sure what to do.  I do worry about her becoming septic or her bacteria becoming antibiotic resistant.  I feel like I'm failing my daughter but I don't know what to do. 

Poor girl was crying on Friday when they took the swab, they had to poke the blister with a needle.  She was inconsolable.  She also had a fever and probably felt like shit.  Yesterday was the same.  When she cries, I cry.  Today she looked much better but was still crying because I put a bandage on her wrist.  She hates bandages, screaming, crying hates bandages.  But the wound is open and weeping now and I don't want anything else to get into the wound.  So the two of use have been crying a fair bit these past few days.  I feel helpless.

14 comments:

  1. My heart breaks for Katie, and for you. All I can say is that I wish it wasn't so hard, so unfair. I don't think you are failing her.

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  2. I'm so sorry to read this. My heart goes to you and your family.

    Greetings from London.

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  3. This is so sad and no doubt endlessly frustrating. I wish I had answers for you.
    You are not failing her. Not at all. xo

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  4. I'm crying too, to hear this. I am so sorry. There's way too much suffering going around -- for you and for Katie. I just don't understand life sometimes. I do understand that you're an extraordinary mother. Katie is on her own journey, and you are right there beside her. Hang in there, beautiful woman.

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  5. I have no words. Just a great deal of admiration for parents who raise special needs children with so much love and patience and hope. My heart goes out to you.

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  6. I have no words. Just a great deal of admiration for parents who raise special needs children with so much love and patience and hope. My heart goes out to you.

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  7. Oh!!! I am so sorry!! For both of you! I have a few ideas and have NO idea if they would be helpful.

    I get staph infections also. I am the only person I know who has gotten them who didn't get them from a hospital setting or from a special set of challenges such as Katie. I've done some reading and it appears that because I have eczema, I am more at risk for them. My body does a reverse defense thing. It defends but not the right risk. It reverse defends.

    I have tried to understand what can strengthen and support the organ of my skin - my first and very important defense against risks, etc. I take probiotics. Any chance Katie could take these or eat regular smoothies with yogourt something similar?

    Also, I get TCM - traditional Chinese medicine. I'm sure there's no way Katie would get needles (acupuncture) or drink teas as I do... but some of the herbs come in very, very, very tiny pills. They are so tiny. Little balls. Any chance she could be treated for these?

    Aside from that, things I do would probably not work for Katie - trying to take really good care of my skin, etc. Lots of lotions, etc. That's too hard for her, I know.

    I will keep thinking and if I think of anything, I'll share.

    With support, ZC

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  8. Here's an article - I just did a quick Google search - on the connection between eczema and staph. I don't know if Katie has eczema like I do. I've had it since babyhood. I had it horribly till my early 30s. She may not fall in this category at all and the info may provide no leads.

    http://www.uofmhealth.org/news/archive/201310/stapheczema

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    1. Thank you for the info. Katie carries the bacteria in her nose most likely and she likes to stick her fingers up her nose all the time, seriously, all the time. She also hits her face with her wrists and bangs her head. Both of the these break the skin and allow the bacteria to colonize.

      She eats a lot of yogurt, loves it actually. I'm going to try putting her on Vitamin which can help. Handwashing is the best prevention but she won't keep her fingers out of her nose.

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    2. If I can think of anything else, I'll send it along. Vitamins sound great. With my own system, I'm always thinking of how I can strengthen that protective organ - my skin. Because all my itself, it's too darn permeable. As a kid, I always impetigo and every other weird thing. As an adult, I've had boils, weird staph infections, etc. So... yes, I do lots of vitamins also, plus probiotics, etc. And I try to wash my hands when I come home. I definitely wash my hands after I've used public transit, etc. And when I visit folks in hospitals, I'm very, very careful. I am the kind of person who does visit people... but I know I'm vulnerable to weird staph stuff... so I wash my hands after I'm there, etc. You can't stop Katie from putting her fingers in her nose, doing the behaviors which lead to abrasion of her skin, etc... all I can think is that strengthening her overall immune system and barrier system (skin organ) is your best defense. Does she tolerate touch well? When you visit, could you give her gentle massage of her hands with lotions? That might be an idea... I also have super dry skin which means my skin is always cracking open, waiting to take in bacteria, etc. Light massage with a good, light lotion... maybe with rosemary or some other natural essential oil which has anti-bacterial properties... would stimulate blood flow, smooth epithelial cells, etc. Just an idea. My heart goes out to both of you and I hope she recovers from this infection soon. ZC

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    3. I had one more idea... would katie tolerate or use a Nasal saline solution or similar? There are some noise things you can get at Whole Foods or similar... it might feel good to her to use them because sensation would be similar to finger and can't be over used. I'll see if i can find and then post for you.

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    4. They are called essential oils nasal inhalers. You can find them online. They are totally different from saline solution. Two different things! The nasal inhalers are bigger than finger so wouldn't get stuck there but katie could put the tip there and that might satisfy the need she has for sensory stim in that area. The essential oils like lavender, rosemary etc ate anti bacterial so that would be good for inner conditions of her nose. You can check it out.

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  9. deb, you know i am sorry but i want to tell you this will pass. katie will be okay. it is your great love that cries those healing tears. that katie and you have to deal with difficult special needs is so unfair and difficult. but at the core of it all there is love.

    thinking of you and sending prayers
    love
    kj

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