Help my toddler, please. It's been 2.5 years and the answer is always "DON'T KNOW"!

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It started when my baby was 2 months old. She had a rash from head to toe and after a month, the small rush was visible on her wrists, and single dots under her knees. When she was 5 months old, her elbows were covered and more visible rash was formed on her wrists. With every month, her skin condition got worse. For first year of her life I was advised to put a vaseline on her...well, that didn't work. Once she turned 12 months, I took her to a dermatologist, and I was again advised to put some vaseline on her. At that point her wrists were covered in crusty dark bracelet looking  shape, her knees were all covered with same crusty texture, her elbows were deeply penetrated into the bones, and her face was affected with few reddish spots. I was told it was eczema at this point. So, she was seen by highly recommended pediatric dermatologists in IL and MI, and was treated for condition known as eczema. Once she turned 2, we moved again to TX, because I was told that the SUN could help her skin to get better. Her skin condition didn't respond to ANY safe steroids that was given as age appropriate. I started questioning doctors. We were able to find one ped. dermatologist who started to listen. My baby had 3 skin biopsies, and nothing was determined. She receives UV treatment for 3 months now, and that helped some, but now her entire body is affected and she does have dark spots on her body where symptoms reappear from time to time. The rash appeares without warning. One month it looks like a Ringworm, next month it looks like Psoriasis, next month it looks like Eczema, and so on. On top of her skin issues, she has a feeding disorder. For 18 months of her life, everytime she was fed, she vomited. She has a small head, and delay in development. However, she is receiving therapies (OT, SP, PT) and she is catching up very quickly, especially in last 4 months. Still, no genetic doctor, neurologist, GI, oncologist, dermatologist, several pediatritians,  can diagnose my child. Her rash is extremely itchy and she screams often, scratches often, and doesn't want to eat or drink. We are desperate to find what is causing all of these symptoms. She is currently on gluten free, dairy free, wheat free, egg free diet. She is only 2.5 years old. Please, help. We don't know what to do anymore...

-Mother-

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4 Replies

  • Posted

    ...that sounds so much like my grandaughter! she is 17 years old now but has suffered so much; a lot of eczema still but learning to manage it. I have asked my daughter to help, so she may give me some info or call in on the site. Eczema.org have some very good advice and lots of helpful info'

    Kind regards,

    Lesley

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    • Posted

      Thank you Lesley. I appreciate every help. The doctors don't think it is eczema, because there are different outbreaks every month indicating different condition.
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    • Posted

      ...eczema can cause different infections; I remember a particularly horrific attack when my grandaughter had skin that broke out in what appeared to be 'cornflakes' stuck all over her. A course of the correct antibiotics sorted it out...no fun, I sympathise. Blessings, Lesley
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  • Posted

    Diet is the way to go although I'd be looking at flavour enhancers and yeast extracts as they make me extremely itchy and rashy. There is an australian site called fed up that might be worth a read for more information. Good luck.
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