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***updated Help! Hoping someone has seen this.(pics)

ruedeodeonruedeodeon Posts: 160
edited July 2017 in Parenting and Life
Hey all, so again I am here to ask your expert parenting advice....We moved to Charleston South Carolina 3 months ago and its been nothing short of a nightmare...From the horrendous heat, to the flooding, to the bugs......again....the bugs...I advise you never EVER move here as cute as it may be....

So we are now plagued with a mystery rash and 5 pediatricians, I repeat 5 have said they HAVE Never seen this and sent us home....This rash started on R's feet and has literally been spreading for almost two weeks. It is HORRIBLE, blistery/burn/ different sized clear fluid filled almost blisters covering his whole body except his belly and back.... We first thought it was Hand Foot and Mouth, but apparently its not that, they said it could be scabies so we treated it, NOT scabies, we are literally at a loss, I haven't slept...I have cried for two days because i fear it causing scars, i mean people are looking at him like its the plague and since NO ONE KNOWS WHAT IT IS, we don't know if its contagious, if it is an allergy to the pesticides they use...SO we took out all factors and are staying at holiday inn up the road...HAVE any of you seen this? I am desperate and NO medical professional can explain it......I am truly beside myself (he has been vaccinated, he doesn't go to daycare)

It is now day 10 and it still is spreading with no one being able to help, some areas are clusters of a bunch of tiny ones and some are huge! He is very uncomfortable its itchy its absolutely AWFUL!

1. not scabies
2. not chickenpox
3. not shingles
4. not eczema
5. not dermatitis
6. not sun rash

And this rash is covering his whole body except for: His face, his neck, his trunk and head...



  • momsquaredmomsquared Posts: 59
    edited November -1
    Can't see your pic. Try to update so we can try to help
    December 2016 Ages 9,7,5 & 3
  • ariellearielle Posts: 240
    edited November -1
    I'm sorry to hear that. It's very strange that the local doctors don't know what it is. Since your picture doesn't come up, maybe in the meantime you could also go to a medical website and ask there. It costs about $25-30 or so to post there (for example on justanswer.com), but you would get a reply from a doctor fast. Did you go to the MUSC clinic? My friend who lives there told me it's a prestigious clinic. Maybe they would be able to figure out what this rash is.
    ICI 07/2012 BFN, ICI 08/2012 BFN, IUI 03/2013 BFN, IUI 06/2013 BFN, ICI 08/2013 BFN, ICI 11/2014 BFN, ICI 12/2014 BFN, ICI 12/2015 BFN, ICI 01/2016 BFN, IUI (with trigger) 02/2016 BFN, IUI (with clomid + trigger) 03/2016 BFN, IUI (with clomid + trigger) 04/2016 BFP - ended in ectopic pregnancy, ICI 10/2016 BFN, ICI 11/2016 BFN, Back to Back IUI 01/2017 BFN, ICI 4/2017 - BFN, ICI 5/2017 - BFN, IVF 6/2017 - 19 blastocysts frozen, FET 8/2017 (single embryo transfer) - BFP
  • alohilanialohilani Posts: 8
    edited November -1
    I cant see the picture, but does the rash bother him? My niece had what sounds similar and it was gianotti crosti. It can come after a viral infection they think. Some kind of immune thing? She had a whole lot of testing and creams before she saw a doctor who diagnosed it in five minutes. It eventually went away and did not scar. Something to ask about maybe? I hope he gets better soon.
  • ruedeodeonruedeodeon Posts: 160
    edited November -1
    Arielle, thanks for the advice we went to MUSC last night the children's emergency unit seven doctors came in including a specialist and they all were scratching their heads they do not have a definitive answer therefore they have no way to help us and besides myself it is very upsetting… I tried to post the picture again but it looks like Photo bucket is nothing but adds so I'm not sure how to post a pic now.
  • ruedeodeonruedeodeon Posts: 160
    edited November -1
    alohilani, that is exactly what they think he has............but they aren't sure because it is so rare, can you tell me anything about this virus syndrome whatever it is, even the pediatricians have never seen it in their office before… Please give me any advice on the syndrome if you know anything I am so desperate… did your nieces rash go away fairly soon? Because the pediatricians told us that he could even last a year if it is in fact crosti syndrome... also when Roman was about nine months old he had a horrible petechial rash breakout after a sickness and has a hypochondriac it really makes me worry about underlying issues why is his immune system reacting this way?
  • alohilanialohilani Posts: 8
    edited November -1
    oh my God I'm so glad you might have a answer. my niece's rash lasted about 4 months before it went away. he said sometimes it takes two weeks, sometimes a lot longer. but she didnt have any scars, just some light spots that eventually went back to her normal color. she is pretty brown. they used to think it only happened with hepatitis b infection. but actually it can happen after a lot of regular viral infections and even after vaccines. She has eczema. The way he explained it is that they actually think the immune system might be in overdrive a little since kids with eczema or allergies get a little more.

    I'm sorry I'm not a doctor to give science details. the doctor that diagnosed it didnt think it was worth testing for a specific virus like mono or whatever because he said it wouldn't chang anything.
  • alohilanialohilani Posts: 8
    edited November -1
    sorry, I was gonna say her mom didn't do anything special fot it besides what she usually does for her eczema ---swimming in and ocean, kukui nut oil and aloe. we live in hawai'i.
  • kelleymelkelleymel Posts: 1,402
    edited November -1
    Could it be chigger bites?
    TTC #1: BFP Cycle #11 IVF (2014)
    TTC #2: IVF April 2017
    BFP: FET Due February 2018
  • ahk00ahk00 Posts: 1,420
    edited November -1
    any update? I hope the LO is doing well.
    SMBC: TTC since 12/2014: 3 home attempts: 2 BFN & 1 chemical. 3 medicated Dr assisted IUI's: 2 BFN & 1 BFP (04/24/15) with twins in May (new donor) MC with D&C @ 9w. 4th IUI 09/17/15: BFN. 10/15: hsg good. 11/15: BFN. 01/16: BFN. 05/16: Embryos arrested. IVF failed 06/16: KD BFN 07/16: KD BFN 09/16: IUI #7 with donor sperm BFP-MC at 9w w/ D&C. 02/17: diagnosed with hetero compound MTHFR & clotting mutation. 03/09/17 IUI #8: chemical pregnancy. IUI #9: 04/19/17 BFN LOOKING FOR EMBRYO'S TO ADOPT
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