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4 yr old sibling worst exacerbation yet


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I have asked you all for advice so much lately that I really hate to ask again. But you all the ones who know.....

 

I really don't even know if I am asking for encouragement or advice.....I just know that I have been trying to avoid the freight train coming down the track, and despite several glimpses of it, tonight it has pulled into the station full force.

 

Poor baby girl. You might remember that when tested for strep several weeks ago.....based on her hand being warm in mine and new and sudden fears of being alone in a room, etc, her culture was positive for pennicillin-resistant staph (negative for strep). She initially took some zithro, which really seemed to help, and Advil was helping. When we got the culture back, we switched to clindamycin (which was not as effective against pandas symptoms).

 

We finished it, and things were okay except you may remember that I posted about her barking and neighing down on the floor almost constantly (even though she seemed to enjoy it and was not obviously distressed). Then a few days ago she seemed sick again suddently. Really warm to the touch, watery eyes and complaining that her belly hurts (every day now). Parents had been sick and took Clindamycin. But they were still not completely well and siblings had coughs. Pandas sibling was positive on rapid strep, zithro for all, but cultures grew nothing.

 

After three full days of having zithro in her, fear of being in another room by herself was present. But tonight it went through the ceiling. Shrieking in fear if in another room where I am not ---even for a moment---even with sibling present. Being afraid to walk on the floor. Shrieking. Poor baby. I almost wish that I didn't know what this was.

 

Night before last she wet the bed. She is almost five and has been potty trained since three. I know where this is going but am apparently powerless to stop it.

 

Another oddity is that she has been sweating a lot. What seems unwarranted by the environment. Like she has a high fever, but she doesn't. I remember dd12 being a heavy sweater in the same way when she was younger. I think maybe her body is trying to detox something.

 

The only thing, other than staph and strep that I can think of is that the other day she got a lot of mosquito bites. I am diligent with insect repellent , but apparently missed this time.

 

I just can't fathom this happening all over again. We're still trying to work it out after years with dd12. I know that so many of you have dealt with the same thing.

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I'm so sorry---- heartbreaking. One day at a time, but it's time to move and fight for her- you can do it.

 

The good news IS that you know what is happening, and it's early. Early is HUGE.

I think you are going to have to go down the PANS list to stop it:

is it Myco P, the staph never cleared, different antibiotics to treat, short steroid burst,

possible Lyme and co- infections,

make sure her guts okay from recent antibx treatment.

Sending good thoughts-------

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my littlest affected child's tonsils cultured postive for Methicillin Resitant Staph (MRSA) when they were removed for sleep apnea (no infection suspected at all!) She really did improve after that- though prior to the Tonsilllectomy- she improved with steroids and abx.

Steroids are the kicker for my kids.

do you have a pandas doc who would see her quickly and rx steroids? don't they help your older kid (s)?

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