Masto symptoms.. hot skin but no fever?

I'm working on getting a diagnosis for my 3yo daughter, Hannah. One of the things I think I'm noticing with her is that she feels very hot during a flare, but sometimes shows no fever (or it fluctuates so quickly, I'm not sure).. I have a forehead thermometer at home and I'm considering getting a good quality oral thermometer instead so that I can get a true reading... have any of you with masto that affects the skin found this to be an issue? She now has spots and rash that cover 90% of her body with itching.

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Flushing! That is a symptom of masto...You get really hot and your body flushes. MIne is usually my ears and face when it happens.
I hope that you get a dr that can help you. It is bad enough to have to go through this as an adult.
Good luck.

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no kidding. My poor girl. She's a tough cookie, that's for sure.
She does flush, (actually, I do too...) but this is a bit different... when she flushes, her blotches get bright red and she looks pale underneath--when this happens, she doesn't get red. She often feels bad when this occurs... someone mentioned 'dumping'...? I'm not sure if it was a post on the Masto discussions or not, but sometimes it seems like that's what is happening. Yesterday seemed like a bad day for her allergy-wise. Itching, coughing and sneezing... when she is like that, she will stay hot for as long as she's itching. I took her to the doctor a couple of weeks ago because she seemed to feel so bad... really low energy which is not like her-- her skin felt very hot, I was sure she had a fever. But when the doc checked her, her temp was normal (oral reading)... last night we ended up in urgent care again... this time coughing and our forehead thermometer read 102. The docs reading was 99 in her armpit-- they took no oral reading last night. I'm sending hubby out today to get an oral thermometer so I can take it both ways and see if there is a difference? Right now I can't tell if we are dealing with a virus or a flare. (arg!)
I just dug up our old ear thermometer... it's reading 102.. so maybe we really are dealing with a virus this time?
I'm SO glad we are seeing the dermatologist on Monday. :P
She's also telling me the bottoms of her feet hurt.. I read that's histamine, right?

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I am new to the masto diagnosis also....I feel many times that my skin is burning and on fire but no temp...I believe that it is the flushing part of it because I can feel it coming on before it gets to the areas on the face and arms that ..will end up red a short time after that...I don't know if that helps you at all ??

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Do ever notice it worse with heat or cold? Say for example after she gets out of a hot bath or if you go outside and it is cold?
Thanks,
Angela

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the 'fever', no. But she is VERY sensitive to temperature. Bath water must be cold or she will have a meltdown--she tells me it makes her skin hurt, or she will start scratching uncontrollably. she has actually put her feet in a tub of ice water before and left them there, happy as could be. (it was keeping bottles of wine cold under a table outside at easter) We live in Texas, so the only way I can even get her in the tub in the summer is to pour pitchers of ice water into the bath water...the water that comes out of the tap is too warm. If she gets too hot for any reason, she will start itching. But usually no flushing (except maybe if she gets overheated in the car sometimes...) otherwise, the flushing isn't necessarily connected to anything specific.

Cocoapuff68--- it ALL helps. :)

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My heart goes out to you both!! It must be so hard for her to understand what is happening! I started flushing when I was around 2 years old if I got upset, I called it my pretend fever because my body was on fire, too hot to touch yet no temp, unless the symptoms spiraled and all hell broke loose as in full anaphylactic shock ie:
major flushing, difficulty breathing, heart racing, throwing up, dizziness etc... then sometimes I did get a fever but the flushing is very different. And I had certain areas that flushed more than others, like cheeks, chest, stomach and legs but not all over, sometimes spots, stripes... then the rest is ghostly white.
If she likes cold then give it to her all she wants, cold bath, cold cloth, ice packs. Hot baths or showers have triggered an attack with me. Are you giving her Benedryl for the flushing and itching? That should help the symptoms.
Is she on any regular meds to keep things under control?
I wish you luck at the doctors on Monday, hoping they can do something to keep her comfortable.
Keep us posted and if you have any more questions please ask away!! This illness is so rare and so few doctors know about it so it's great to compare notes!
Give your little sweetheart a big hug for me!!
Healing Hugs!!

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I went through 3 months of my face burning up almost everyday and it came on very quickly. There really was no reason for it. It was during a period when I was sensitive to food and suffering from gastric issues such as reflux, gas and stomach pains. After a change to a low-histamine diet, antihistamines and 300g of Zantac everyday for that 3 months period, everything settled down including the flushing. And fortunately haven't experienced it since. Wish you and your daughter all very the best. - Mel

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poetessa... thanks for your input from a child's point of view. :) Since we don't have an official diagnosis yet, we've been treating this as eczema-- unfortunately, Steroid creams did not work for her. When she was a year or so old, we started with those and the patches would go away-- only to come back worse and bigger with the next flare. So I stopped that after 2 or 3 different prescriptions. I'm a natural remedies kind of person by nature, and when they started to give me creams with black box warnings for my 2 year old, I had to stop with that. I would rather deal with a rash than cancer!
We have had pretty good luck with homeopathics and chiropractic treatment-- I also had her on Zyrtec twice daily for nasal allergies as well as itching--- until this last flare. It happened while she was on Zyrtec, and after doing some research I discovered that many of her behavior issues as well as some of the itching could be tied directly to that medication... so we went off of that a couple of weeks ago, and really she seems no worse off.

So now, we are down to:
my version of the magic lotion.... a mix of Hylira, CeraVe, and now Nasalcrom mixed in on a damp washcloth (this is the ONLY way she will even let us touch her.)... the only other thing we are 'allowed' (by her, lol!) to put on her is vaseline.
At the advice of our Chiro after her last flare, we are on 4,000IU of vitamin D3 daily. Y'all know all to well how hard it is to get in the sun! We are definitely seeing improvement in her sleeping, so that's good.

Since we've been treating this as 'eczema' up to now, that's pretty much all we are giving her... and of course, lifestyle habits like keeping her cool, avoiding certain foods, etc... I do have Benadryl, just in case.
In the last couple of weeks, she has improved pretty drastically (especially after I started using the Nasalcrom on her).. my hope for this appointment today is to get her an epi pen (just in case) and possibly some Gastrocrom (she does have stomach issues).

I'll llet y'all know how it goes!

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did they rule out fifths disease and roseola

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are you kidding? they haven't 'ruled out' anything, lol! This last dermatologist said 'it's just really bad eczema'.... REALLY, now? Except you are seeing her on a GOOD day??? and you won't even run a simple urine test for histamine??? arg.

an update... I finally went to my pediatrician last week with my theory about Masto, and he immediately ran every test I asked for. I had been avoiding his office because the flu is rampant here and the wait to see him is usually about an hour... but I finally sucked it up and went. I love that he is curious, and has no ego about these things. When I told him what I thought, he said 'well, you've obviously been doing your research on this... tell me what tests we need to run".... they drew six vials of blood, and did a 24 hour urine test. We are still waiting to hear back on most of the results, although he has called me the last two evenings with updates on what has come in so far. I love the man. Well worth the hour wait to see him. :)
so far, I know her iron is low (21), her D3 is low (49)... but the biggest two things I see.. .Tryptase is 3 ??? I see such high numbers on here, is that even possible? :D And her IgE is 4719 (normal is around 120).... If any of you have any input on these numbers, please share...

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