dr hive... desperate, please look at pics

[butterflymommy]

Long story short, DD had moderate eczema as a baby/ toddler but outgrew it. Since puberty she has developed this splotchy, sunburn like rash that burns and itches (but looks different from the eczema she used to have). The scratch marks are from her scratching. She also has had, getting worse over the past year: severe fatigue (sleeping 13 hrs at night, waking up and going back to sleep three hours later), joint pain, numbness in hands and feet, and skin infection (boils & folliculitis). We have tried every OTC and prescription cream for the rash, nothing helped. The only thing that has helped is oral prednisone. The rash is still there when she takes prednisone, but it calms down, and her other symptoms decrease.

 

She has a malar rash on her face that comes and goes but her ANA test was negative (her brother had a positive ANA test and malar rash but no other lupus symptoms... I have no idea if this is relevant). She has elevated cholesterol despite eating mostly vegan (picky eater) and poultry maybe once a week. (My head was spinning at the dr yesterday so I can't remember her exact numbers). We're going to try to increase her protein intake.

 

If you smart ladies have ANY ideas on what could be going on please share... we are desperate to solve this. When the pain and rash are at their worst she cannot function. TIA :grouphug:

[Susann]

Oh my goodness-poor baby! I don't have any suggestions but hope you find your answer soon!!

[Catherine]

What she has looks like widespread eczema. Her history of eczema, the itching, and the partial improvement with prednisone all point to this too. The real question is whether any triggering factor can be identified that can be removed from her diet or environment that she might be reacting to.

 

Has she seen a dermatologist? At a referral center, preferably? And has she ever seen an allergist? Also preferably at a referral center. My sympathies. She must be miserable.

 

Catherine

[JudoMom]

Have you seen a rheumatologist? I've had negative and mildly positive ANA tests. Has she had the test more than once? The joint pain makes me think something autoimmune. I've got autoimmune hepatitis, but my blood tests don't present in the proper fashion.

[butterflymommy]

What she has looks like widespread eczema. Her history of eczema, the itching, and the partial improvement with prednisone all point to this too. The real question is whether any triggering factor can be identified that can be removed from her diet or environment that she might be reacting to.

 

Has she seen a dermatologist? At a referral center, preferably? And has she ever seen an allergist? Also preferably at a referral center. My sympathies. She must be miserable.

 

Catherine

 

 

She has been to an allergist and going to the dermatologist next week. She is severely allergic to dust mites, and we have all the bedding for that, which helped, but this rash has cropped up over the past year (about 1 1/2 years after the dust mite bedding) getting worse to the point it's at now.

 

She is a picky eater... mainly bread, fruit, cheese, occasionally chicken, no veggies. Because of her cholesterol the dr said no more cheese. We have no animals in the house (she's allergic).

 

TY!

[butterflymommy]

Have you seen a rheumatologist? I've had negative and mildly positive ANA tests. Has she had the test more than once? The joint pain makes me think something autoimmune. I've got autoimmune hepatitis, but my blood tests don't present in the proper fashion.

 

 

The drs have been dismissive about her fatigue and joint pain issues. They say it's probably a teenager thing. After seeing the dermatologist next week I will try to get a referral to a rheumatologist.

 

How often can or should ANA tests be repeated if you suspect an autoimmune issue?

[Mommyfaithe]

That looks like systemic candida to me. Poor girl! I would look at her gut health...the skin is a huge organ and detox will often go through the skin....ouch! And itchy!

 

Google the Yeast Connection and get it from your library....tons of great info!

[twoxcell]

Have you thought about possible food intolerance, such as gluten or dairy? I hope you find some answers soon. :(

[wapiti]

Based on my nephew, that looks like it's infected with staph. Google eczema, staph infection and bleach baths - that is what I'd try for now, in addition to further allergy testing for triggers of the eczema. Since it's so bad, I might consider oral antibiotics and then a longer-term bleach bath schedule until you can get a handle on the trigger. (Of course, antibiotics would worsen a yeast situation and/or upset the balance, but that looks like staph to me)

 

And yes, I'd see a dermatologist for sure.

[walkermamaof4]

That looks like systemic candida to me. Poor girl! I would look at her gut health...the skin is a huge organ and detox will often go through the skin....ouch! And itchy!

 

Google the Yeast Connection and get it from your library....tons of great info!

 

I agree. I think this is really a gut/allergy issue. Another great resource is Gut and Psychological Syndrome. Paleomom's blog has fabulous quick info too. You can do the paleo aip diet to figure out the source of her troubles and get relief without drugs and with true healing of the problem rather than just bandaids that leave the problem for life.

 

If you do nothing else, try eliminating gluten and eggs in addition to the dairy. But removing all of the top allergens and reintroducing them one by one will identify the culprits. The paleo aip is a great way to get this done yourself without further doctor bills. The book Practical Paleo has a 30 day menu.

 

HTH

[justamouse]

God, that poor girl. :grouphug: to her, for bearing it, and :grouphug: :grouphug: to you for having to watch her bear it.

[Freckles]

:bigear: I'm struggling with this as well on my legs and hives everywhere else. My ana and ra tests came back negative, and I'm on my second round of Prednisone in a month. I'm on day three of cutting out dairy because I love cheese. I haven't seen a difference yet, but I know it's still early. Next I will cut out eggs, and then I'll try gluten after that. It's so discouraging, and I understand your daughters pain. I hope she get's better soon, and you find the trigger.

[wonderchica]

The pictures, joint pain and fatigue make me think lupus or dermatomyositis. My father was misdiagnosed with lupus for years (common) then correctly with dermatomyositis. The pictures look EXTREMELY similar to what his skin looks like. If you do a Google image search, those pictures are extreme cases that were probably untreated for a long time. I wouldn't go by those.

 

ETA: His doctor is one of the leading experts and has done most of the literature/research in dermatomyositis. He has a clinic in NYC if you would like info.

 

ETA2: The numbness is also a symptom of dermatomyositis. I would get this checked out ASAP.

[wapiti]

She has elevated cholesterol despite eating mostly vegan (picky eater) and poultry maybe once a week. (My head was spinning at the dr yesterday so I can't remember her exact numbers). We're going to try to increase her protein intake.

 

I'd guess this is unrelated to the rash, but with high cholesterol I'd wonder whether she's eating too many carbs and insufficient fats. I'd try increasing protein for sure and some good fats.

[Stacia]

She is a picky eater... mainly bread, fruit, cheese, occasionally chicken, no veggies. Because of her cholesterol the dr said no more cheese. We have no animals in the house (she's allergic).

 

I'm not a dr., but a lot of what I've read indicates that cholesterol can be reduced by reducing carb intake. Looks like her diet is mostly carbs. Also, many things I have read indicate that taking wheat out of the diet can reduce inflammation.

 

I'd modify her diet to be mostly veggies, chicken (& fish if she'll eat it), beans/legumes/nuts/seeds, & only a little bit of fruit. I'm thinking doing that for a week or two might help with some of the problems. It might be worth a try.

 

:grouphug: Poor girl. It looks painful. Hope she (& you) find respite from this soon.

[magnificent_baby]

I'm probably wrong but going to throw this out there. Could it be 5th disease? My kids all had it recently. It comes with the malar rash and lacey looking rash throughout the body. Dd complained of her rash itching like crazy, though the younger 2 kids did not. We had to lotion her daily. They all also had joint pain, which can last a long time. The rash can come and go up to a few months. Symptoms can be so mild that you don't realize they've had it until they break out into the rash.

 

When you say since puberty, are you talking about years of these symptoms? If so, than I'm probably way off base.

[gardenmom5]

I don't know the name - but a neighbor child who has since moved, had a very similar rash from babyhood. it's why they homeschooled. there was a foundation associated with the condition, and they even attended a conference in the midwest about it. I'm sorry I can't be more help - but if it's the same thing - there is help out there.

 

have you tried a good dermatologist?

[Paige]

Has she been tested for food allergies? My DD had a similar rash last summer and it turned out to be a food (apples) she was eating daily- sometimes many servings per day. DD is very sensitive to it and needs to avoid all apple products and even items with pectin. She still has eczema and sensitive skin, but when she avoids that food she doesn't get horribly bad. I think fatigue could be natural because it is hard to sleep when you are itchy! Food allergies can get worse or appear for the first time around puberty. My DD is only 5 but the allergist warned us that she may get better or worse when she hits puberty and to keep an eye out. She had been eating apples since she began eating food and I ate apples when breastfeeding and she always had a mild rash. We didn't really change our eating habits but for some reason, DDs allergy, which had probably always been there, went crazy last summer.

 

I don't have any experience with the other things people have suggested, but my first step would be to run a full allergy panel if she hasn't had one in the past few years. It could be a simple fix. Our dermatologist wanted to put my DD (who was only 4 at the time!) through light therapy before testing for food allergies, which seemed crazy to me. I would definitely test first, but light therapy could be something to help if she isn't getting relief other places and it doesn't stop. I know it is hard. When it is that bad, you feel awkward going out in public because people fear it may be something horrible and contagious.

[In the Rain]

Yikes! I have no advice, just :grouphug: . It looks terribly painful. In myself, I find that certain foods cause skin and joint issues. One of the problem foods showed up in allergy testing. The other one didn't.

[J-rap]

It looks like psoriasis to me. There is a condition that goes hand-in-hand with that called psoriatic arthritis, which could explain her joint pain. It is a type of auto-immune disorder. There are meds that can help, but interestingly, sunshine and vitamin D help too. My brother is a doctor and he has this condition. Being in the sunshine and sometimes going under a sun lamp helps. Anyway -- just a thought.

[justamouse]

I would start with an autoimmune protocol. The Paleo Mom, Sarah, is a research scientist who started the paleo journey by trying, and successfully, healing herself.

[tex-bex]

Another vote for a dietary approach. There have been some great recommendations already, like GAPS and AIP.

 

Looks awful - hope you find relief for her!

[butterflymommy]

Based on my nephew, that looks like it's infected with staph. Google eczema, staph infection and bleach baths - that is what I'd try for now, in addition to further allergy testing for triggers of the eczema. Since it's so bad, I might consider oral antibiotics and then a longer-term bleach bath schedule until you can get a handle on the trigger. (Of course, antibiotics would worsen a yeast situation and/or upset the balance, but that looks like staph to me)

 

And yes, I'd see a dermatologist for sure.

 

We've done bleach baths and I've wondered if she might need low dose, long term antibiotics (like are prescribed for severe acne sufferers). Maybe the derm will have some answers. I have read that eczema is thought to be the skin's inability to deal with staph, that people with eczema lack a natural antibiotic in their skin that everyone else has.

 

That being said, the splotchy sunburn rash really doesn't look like eczema-- we have a lot of eczema in the family and normally it looks scabby and scaly. This is flat, almost like someone painted her skin.

[JudoMom]

 

The drs have been dismissive about her fatigue and joint pain issues. They say it's probably a teenager thing. After seeing the dermatologist next week I will try to get a referral to a rheumatologist.

 

How often can or should ANA tests be repeated if you suspect an autoimmune issue?

 

 

I would definitely try and get a referral to a rheumatologist if you can. I dismissed my fatigue and pain and chalked them up to being a homeschooling mom of 5. I don't know how often the ANA can/should be repeated, but for awhile there I was getting labs done very 4-8 weeks.

 

While changing the diet is definitely worth a try, it doesn't work for everyone and not all can be healed that way (it didn't work for me or my son). If the dermatologist can't give you a good answer, definitely go to a rheumatologist. Autoimmune diseases are complicated and don't always present in a textbook manner--neither mine nor my son's did. It took 2 years to get a diagnosis for my son, and it took almost 10 months to get a diagnosis for me, and this was with good doctors who knew something was really wrong with both of us. While I'm not officially diagnosed with lupus, one of the medications I'm on is used to treat joint pain in those with lupus and it has changed my life.

 

 

:grouphug: :grouphug: :grouphug: It's such a helpless and discouraging place to be.

[MicheleinMN]

oops!

[MicheleinMN]

We went to Mayo Clinic last year for ds whose eczema looked so much like your dd's. They had him use steroid creams and wet wraps which pretty much cleared it all up, but as soon as he stopped covering himself in steroid creams, his skin is pretty much back to how it was before. Thank you for posting the photos. Ds and I have never seen anyone else with his type of eczema. (It is a different type/look from what he had before puberty.)

 

Please feel free to email me privately. mmtrostle@gmail.com

Michele

in MN

[ktgrok]

It looks like psoriasis to me. There is a condition that goes hand-in-hand with that called psoriatic arthritis, which could explain her joint pain. It is a type of auto-immune disorder. There are meds that can help, but interestingly, sunshine and vitamin D help too. My brother is a doctor and he has this condition. Being in the sunshine and sometimes going under a sun lamp helps. Anyway -- just a thought.

 

 

Agreed, I thought it looked like psoriasis too, and would explain the joints. A dermatologist should be able to identify that.

[Alice]

You’ve gotten good thoughts here. I think seeing dermatology and/or rheumatology are going to be the best bets for. Although often it’s the particular doctor that is helpful and not necessarily the specialty. To me her symptoms seem to be very autoimmune.

 

Dermatitis herpetiformis is a possibility not mentioned specifically here but looks like this and is often seen in those with celiac. A dermatologist should be able to diagnose the rash but to confirm celiac for sure. you’d have to see GI. Dermatitis herpetiformis is also associated with Hashimoto’s thyroiditis, as is high cholesterol (and fatigue and joint pain).

 

Poor thing! Hope you get an answer soon.

[MicheleinMN]

Does it clear up if she takes an anitbiotic? Ds's skin always improves when he's on Keflex.

[mom2samlibby]

The joint pain, numbness, and rash make me wonder if it could be lyme disease. http://arthritis.webmd.com/tc/lyme-disease-symptoms

 

There is a lady on another message board forum that I frequent that thought she had was in the beginning stages of MS, when they found out it was actually lyme disease. She had passed it on to most of her children through pregnancy. They all had to be treated with a year's worth of antibiotics.

 

Has your daughter been tested for lyme disease?

[Slartibartfast]

I agree with seeing a rheumatologist, that looks pretty painful. I don't know that I would treat according to Dr Internet over something so sensitive looking.

[justamouse]

If it is something autoimmune, and you give her more antibiotics, you are going to make her gut worse.

[butterflymommy]

I agree with seeing a rheumatologist, that looks pretty painful. I don't know that I would treat according to Dr Internet over something so sensitive looking.

 

We're definitely seeking out the specialists and experts, but, I know that sometimes things like this can be misdiagnosed or difficult to diagnose. So I'm covering all my bases by asking and reading on my own.

 

I'm not sure if she's been tested for lyme-- I know my son was when he developed a malar rash (negative).

 

Thank you for all your thoughts!!!! You guys are amazing. So many smart people here.

[Lizzie in Ma]

The joint pain, numbness, and rash make me wonder if it could be lyme disease. http://arthritis.web...isease-symptoms

 

There is a lady on another message board forum that I frequent that thought she had was in the beginning stages of MS, when they found out it was actually lyme disease. She had passed it on to most of her children through pregnancy. They all had to be treated with a year's worth of antibiotics.

 

Has your daughter been tested for lyme disease?

 

I was going to suggest this as well. Early in her Lyme our dd had very strange rashes, we did all the allergy testing, scratch and patch tests to no avail. She got hives from heat, cold, sun, pressure, it was nuts. Weird rashes all over her belly too. Joint pain and headaches were her other symptoms.

It still wasn't diagnosed until 5 years later and by then she had NeuroLyme and we are still trying to get her well.

Couldn't hurt to test, make sure you get the Western Blot, both IgM and IgG. and read up on it at http://www.ilads.org...about_lyme.html

 

Edited to add, if it is Lyme, steroids are about the worst thing she could take...

[Slartibartfast]

We're definitely seeking out the specialists and experts, but, I know that sometimes things like this can be misdiagnosed or difficult to diagnose. So I'm covering all my bases by asking and reading on my own.

 

I'm not sure if she's been tested for lyme-- I know my son was when he developed a malar rash (negative).

 

Thank you for all your thoughts!!!! You guys are amazing. So many smart people here.

 

 

I see what you mean :) Sometimes I wonder where all the diagnosticians are. Is that not taught in med school anymore? It seems like a lot just want to pass out pills for symptoms than treat the cause.

 

I think psoriasis that is that extensive would have scaling or yellow patches of some sort wouldn't it? I have a friend that has psoriasis and he does have scaling and dry patches. Looking at his rash I wouldn't say it looked like it had been painted on.

 

I agree with some of the suggestions in here, maybe eczema or Lyme. I think plain old hives would also fit the description.