the last picture was taken 20 minutes after the 1st two! vaseline makes all the creases of his skin bleed, aquaphor just coats and suffocates his skin, any other commercially sold lotions, oils or creams make him sting and itch from the corn-based alcohols and fragrances. prescription steroid creams burn like fire. at this point, when his creases are swollen and seeping blood because his skin has gotten so thin and irritated, even coconut and olive oils provide no real relief, they are too thin.only waxy, heavily oily, emollient rich raw shea butter truly soothes, nourishes, heals and feeds his skin when he's dried out and fragile after a flare-up like this. i watch the redness literally fade away before my eyes and the inflammation dissipate as it sinks in and his skin drinks it up like the desert does the rain.
thanks be for shea butter for atopic allergies!!
10 comments:
Have u heard of red skin syndrome....aka, topical steroid addiction withdrawal? My son is suffering from it and we are in week 13 totally off steroids. Here is his story....http://klinestopicalsteroidhell.blogspot.com/
Here is also a Link to the red skin non profitnwith lots of information and
Dr. Rapaprorts
Medical journals and teleconferences.
www. Itsawn.com
Your poor little guy! Xoxoxoxoxoxxoxoxxoxoxxx I know how u feel!!
http://www.itsan.org/
I think I gave you the wrong link....xoxoxoxoxoxo
Kinds steroids also burned like crazy, that was why we went off of them in the first place , they were not helping anymore.Kline was on topical steroids for 2.5 years straight multiple times a day...his doctors never warned us of not using more than 5 day and stop use if eczema gets worse, they just kept telling me to put it on whether it burned or not! Xoxoxoxoxo
loren, i didn't realize you were "that" loren! your blog gets updates posted regularly in one of my groups on FB and i follow it avidly. i learned about RSS from it and just 2 wks ago, was completely convinced 'lou had it, too!
but our allergist has *always* warned me to try anything else before we have to resort to topical 'roids and never to use more than 2x daily for 3 days in a row. he told me it can really damage his skin more. so he says we have not nearly used them enough to have RSS, but he did a blood test for something that would indicate he has it the friday before last. (cortisol levels, maybe - do you know what i mean?) it was normal, so he says we have ruled RSS out for 'lou.
every time i see your little guy, tho - i wonder how raw shea butter wraps at bedtime, after a bath would be for him - have you ever tried it? raw shea butter has naturally anti-inflammatory properties, it is really miraculous to watch the redness literally swirling off 'lou's skin when i apply it!
thanks for commenting and i will stay updated on your blog, i am sending my best thoughts your way - i feel you more than i care to!
Oh no, I am already know as , " that Loren!" lol
I have heard of the raw she a butter but have nit tried it....isn't there also a difference between different colors of Shea butter too???? Where do I get it?
Interesting what your allergist thinks......he may very well be right? But I have heard of people getting addicted From extremely minimal use....I email dr.Rapaport to see what he thinks, I'll let you know if he gets back to me!
He has had over 2000 patients with red skin that have all been cured, so I am sure he has seen everything and would have a much better answer than I do! ;-).did your allergist say Lou should still use steroids or not?
Let's definitely keep in touch and I hope to see your little one all better very soon!!!!! Xoxoxoxoxoxo that Loren ;-) lol
Ps I love all of your movie choices!! All though I must admit...tonight I went to the grocer to get Kline organic free range deli meat and I bought 2 boxes of coco pebbles for myself! Shame on me!! Talk about gmo and bad stuff, HUH? ;-)
we use the most unrefined and raw version of shea butter. there is a version that is more orange-y (might be derived from africa, iirc) but it stained his clothes too much, so we go for the very pale beige/slightly yellow one. i get it from a local health food store here in michigan - where are you?
our routine has always been to try natural remedies for his flares 1st. so when he gets all beefy and inflamed and itchy, i let him soak in a party bucket of water and green tea (great for inflammation, redness and itch), then when he gets out and is still damp, i imm slather him in shea butter (sometimes mango butter of the shea stings too much) and put long, light layers on him to sort of 'wrap' him in it.
if that doesn't help after a few days, we usually retest him to see if he's reacting to something he's newly allergic to and eliminate it, if so.
if none of that works, *then* his allergist prescribes steroids. we've really only used them over the last year with any regularity, but i have to say they don't do a damn thing to help, so i don't think we've gotten 'addicted' in the dependency sense of the word - they've never helped.
but i still do think our sons look VERY similar in symptoms and sounds even more so! i've had lots of ppl on my fb page read your blog and tell me that sounds just like 'lou!
so here's what i want to know: does kline ever look pretty good but still live in itching, scratching misery? b/c i will get 'lou's skin looking pretty darn good, but he still can't sleep or stop itching.
however, 'lou is in a HUGE allergy crisis right now w/ an IgE of 12, 552. in fact, we have just been told by his dr.s that it's time to take him out of the state to a world-class, top notch hospital specializing in kids like him. his ped wanted the mayo clinic or johns hopkins, but the top allergist in michigan says a place in denver is the best. 'lou also might have EE and he needs to be screened for hyper IgE syndrome now, as well - have these possibilities ever been mentioned in conjunction w/ kline's issues?
our allergist still says to use the topical steroids as needed - when we can't clear up a rash - but the rash is pretty much a constant thing now and they don't help - so i rarely use them. 'lou also becomes infected almost continually now, so i worry more about that than the rashes.
i'm also wondering if you or your dr. have heard of the modified goeckerman treatment for healing skin like 'lou's and kline's. i'd be really curious to know what you both think of it - my dr.s are recommending it to put 'lou in remission and hopefully allow him to start school in the fall.
Just got this...sorry! Yes, Kline is always itchy, he does go into the real red all over crazy itching flares that are much more intense. But pretty much he is itchy all of the time!!!! I have heard the Jewish hospital is good for allergies and asthma too but I know they used full body wet steroid wraps on all of the eczema kids!
Allergy wise, nothing makes a difference in klines skin, we have taken all of his foods out and he lived on 3 or 4 things for 8 weeks and nothing got any better! He is anaphylactic to dairy eggs and all nuts, so we stay away from them. And i am gluten free so we don't do that. And no food color just because I don't think it's too good. So I do not believe klines skin is allergy related. It doesn't matter where he sleeps or if we removed all of our carpet or dust mite proof his bed, nothing changed. We did air litlers through out our house, water filters, and still nothing!
I too can't believe how much alike Lou and Kline look.
I think that since the steroids never worked for Lou that could be another sign of addiction....some peole get addicted right away, after just a week of use. It is crazy how some people do and some do not and oral sterooids can also lead to the addiction.
I used steroids for 7 years heavily and never got addicted. I wish for everything in the world I had and Kline hadn't!! They say about 20% of people get addicted and people with allergies and a compromised immune system are more likely. Like Kline!
Maybe by watching lines journey wpyou will get more answers! I hope to god we all do!!!! Something needs to give, our babies can not suffer like this forever! All my love, Loren xoxoxoxo.
I am hoping that as Kline goes through withdrawal you will get more answers.
Ps, klines doctor did not want to do an ieg testing because they new the numbers would be through the roof since his immune system isn't so good right now. That was not dr. Rapaport, that was his local doctor who is knowledgeable of allergies.xoxoxo
Dr. MArvin Rapaport, the founder of topical steroids and kline's doctor whom we travel to LA to see responded to my email about Lou. this is what he said.....
"Tell the other mother that this is not an allergist's field- despite his "warning" about limited usage the problem is still the steroids- every little bit feeds the fire. other MD's are just reluctant to admit error or to take a different opinion and approach -all the while the patients gets worse and worse. best Dr MR "
i also gave him your blog and i think he planning on taking time and leaving you a message when he can. he is a really kind doctor and him taking the time to respond and possible comment on your blogs confirms it for me!
I hope he and you are well! xoxxoxox loren
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