02-17-2019, 05:08 PM   #1
Pilgrim
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Shingles

Little H developed shingles. We ended up at children's hospital to see the infectious disease specialist. It devoloped in an odd way, working up her body as well as around one side.
We had to drop her Humira and Mtx this week at least. Hopefully, it won't cause a problem with her response.
She is on antiviral drugs in the meantime.
It's been a stressful week!
02-17-2019, 05:35 PM   #2
my little penguin
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Has she had chicken pox (did she have the chicken pox vaccine ?)
Dh has shingles and exposed Ds a few years ago
But we were told Ds couldn’t develop shingles
But only could develop chicken pox (but he had the chicken pox vaccine x2)
So they tested titers abd we watched
In his case nothing happened but one lesion we now know is Sweets syndrome lesion
But didn’t at the time

Did they biopsy the fresh lesion with dermatologist?
Given the number of crazy lesions that crohns and autoimmune can produce

Hate she has to stop humira and mtx
That’s always rough when infection is at play
Really hope things calm quickly for her
The whole thing stinks

Sending healthy vibes your way
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02-17-2019, 06:38 PM   #3
Pilgrim
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Thanks, MLP. She has had chicken pox, before diagnosis. Then chicken pox vaccine (redundantly) just before biologics. So, both.
Noone here has had shingles. And because of the unpredictable way it's behaving, ID thought she would be airborne so we are keeping her away from school, etc...
It really does look like shingles, they had no doubts. But I will keep a watch to see what happens next. Because things can develop...
Good advice!
02-17-2019, 07:11 PM   #4
my little penguin
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Ugh
Hate that for her
Sweets lesions can “weep” ooze
And come in all shapes sizes
Glad they are watching her closely- just keep Dermo in mind if things don’t behave properly
Ds first really bad outbreak of sweets we assume hives (dh had hives at the same time )
Then protracted hives , then infection (they were oozing )
All specialists thought they knew exactly at the time what it was
Until Dermo
02-17-2019, 09:37 PM   #5
my little penguin
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One last thing
Shingles comes from dormant chicken pox
So someone with shingles can give a child who hasn’t had chicken pox
Chicken pox
But shingles is simply a chicken pox virus that stays in the body and gets released later
(Sooner in immunosuppressed folks )
So she wouldn’t have “caught “ shingles since she had chicken pox prior
It was already there in her body -waiting

Hope that makes sense
02-17-2019, 09:58 PM   #6
pdx
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So sorry to hear this, Pilgrim. I hope that she recovers quickly and can go back on her Humira and mtx soon.

E was on antivirals last week for flu. She also had to hold mtx for a week, but luckily she was right in the middle of her Remicade cycle, so we didn't have to delay that. Anyway, so far she hasn't had any Crohn's symptoms; hopefully H will be the same.
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Remicade started 12/24/14 (9 mg/kg every 6 weeks)
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vitamin D, folic acid, multivitamin, Prozac

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90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
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02-17-2019, 11:23 PM   #7
Jelly loves Peanut butter
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Sorry to hear your daughter has shingles 😥. Hopefully she will be feeling better soon and get back on her meds. Take care🤗❤️💜💙
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02-17-2019, 11:50 PM   #8
Pilgrim
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One last thing
Shingles comes from dormant chicken pox
So someone with shingles can give a child who hasn’t had chicken pox
Chicken pox
But shingles is simply a chicken pox virus that stays in the body and gets released later
(Sooner in immunosuppressed folks )
So she wouldn’t have “caught “ shingles since she had chicken pox prior
It was already there in her body -waiting

Hope that makes sense
Yes, that was how I understood it. But the caution to keep her home was for unvaccinated people in the wider community. The information that was new to me was that if shingles behaves in a certain way it can spread it's virus just through contact with sores. But if it behaves in another way, it could be an airborne contagion(in the unvaccinated).
I am watching her brother closely this week as he is also taking Humira, albeit a lower dose.
02-18-2019, 08:04 PM   #9
Maya142
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Really sorry to hear H has shingles. Poor kiddo!! That sounds miserable. How is she feeling? Is the rash painful or just itchy?

We were told the same - that a kiddo who has not had chicken pox wouldn't get shingles from someone - they'd get chicken pox. My daughters both had the chicken pox vaccine + a booster before starting biologics.

That's interesting that sometimes it's contagious only from contact with the sores and sometimes it's airborne. Who knew!

I hope H recovers quickly!!
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dx with JIA at 14
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02-19-2019, 09:21 AM   #10
Lisa
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Poor kiddo! I had shingles 2-3 years ago now - started as an itchy/tingly feeling under my left arm and in a couple of days the tell-tale rash started and wrapped its' way around my torso under my breast to my breastbone. Was NOT fun!

Hope she gets over it soon - did the doctor prescribe anything such as lidocane patches to help with pain/itching? Those helped a bit but not much for me.....
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02-19-2019, 10:26 PM   #11
Pilgrim
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Poor kiddo! I had shingles 2-3 years ago now - started as an itchy/tingly feeling under my left arm and in a couple of days the tell-tale rash started and wrapped its' way around my torso under my breast to my breastbone. Was NOT fun!

Hope she gets over it soon - did the doctor prescribe anything such as lidocane patches to help with pain/itching? Those helped a bit but not much for me.....
H told the specialist that it doesn't really cause her pain, only the itching. The itching is still quite bothersome even as the patches are crusted over. Plus she is so, so tired. Sleeping during the day.
No meds besides the antivirals.
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