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Discussion Starter · #1 ·
Two peds and a ped dermatologist have prescribed dd (7.5 months) Elidel for her eczema. Her patches are in her elbow and knee pits, her face, her neck, and her ankles. They are angry and they ooze. I have tried a lot of things (no dairy for a month, EFA's for 2 weeks, various creams, a homeopathic remedy, oils & lotions, bathing less, bathing more, mild detergents, mild or no soap, etc. etc.) and some help, but none have made much of a difference.<br><br>
I know Elidel has a black box cancerous warning and I also know the studies that lead to that warning are mega-dose based. I'm operating on about zero sleep since dd will not lay still in her sleep due to the scratching. I can't put mittens on her (or those eczema suits) because the one source of comfort she can give herself is her fingers to suck on. I don't have the brain power to research the medicine right now, so I'm hoping some more experienced mamas can help me out! <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/dizzy.gif" style="border:0px solid;" title="Dizzy">:<br><br>
So my question is this, how does Elidel work? Does it suppress like steriods leading to asthma? Have you used it on your children and if so, what results did you see?<br><br>
Thank you! Thank you for your help!
 

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I used it on my oldest dd for the eczema on her face which would just not go away any other way--we tried diet modification, different creams, different detergents, homeopathics, hydrocortizone cream, etc. Everywhere else was under control, but her face was oozing and itchy and really bothering her; I was starting to worry about permanent scarring. Elidel helped really quickly with both major face outbreaks she had.<br><br>
In my dd's case her eczema is stress related--she had her first outbreak at 2 and it started a few days after her baby sister was born. Her other major outbreak was when we had to move out of our house for major renovations. She gets much smaller outbreaks of it with all significant life changes, but more recently it's only been her thighs and inside of the elbow, wrist and knees, not her face.<br><br>
Unless things have changed since I did my research, even the makers of elidel aren't quite sure how it works. You do need to keep out of the sun while using it though.
 

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Big hugs mama. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">: We've been dealing with the same thing for the past couple years. We've been getting good results with pure raw shea butter and coconut oil on my sons skin (but you should be careful in using these if you suspect tree nut allergies, we've done several different tests on ds over the past couple years that have all agreed he is not reacting to them). He still at 2.5yo scratches in his sleep though and we haven't been able to narrow down all the causes. It's not as bad as when he was covered in the angry, weeping eczema and we'd pin his arms to the bed to prevent his scratching.<br><br>
I researched Elidel a while back and found some scary stuff (I'll see if I can dig up the links later). We've opted not to go that route or the steroid route despite our fears of scarring and the fact that our sleep is suffering for it. I don't have any great advice for you, but you're not alone in dealing with this. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">:
 

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We use it on Claire. I try to use it only on her face mainly due to the fact that my insurance doesn't cover it. A small tube costs me over $50.<br><br>
She scratches especially at night. We initially tried baby mittens and socks over the hands. She's a thumb sucker so neither worked and besides she could take them off.<br><br>
Foods are her main trigger. She has 16 different foods that flag on her allergy test. There's no way to completely ban them from the house so we've developed rules about food. Food is only in the kitchen. For awhile we got a bit lax about that, but she flared so now it's back to that rule. Her older sisters hate it, but they are adapting. We also got a Roomba for the kitchen. It vacuums each night and sometimes during the day if DH and the girls are leaving for a bit. That made a big difference back when she was at the crawling stage and was putting everything in her mouth.<br><br>
I've done my research. I feel comfortable knowing that the black box warning was not actually for the cream so I'm comfortable using it on her. I was trying to get her enrolled in a study that was specifically looking at kids who have used it, but it was already full. The medical community is working to prove that it is OK to use topically on kids.<br><br>
She has so many allergies we find it difficult to do so many of the alternative treatments for eczema. I can't get the dairy free probiotics here. (Dairy is her worst allergy.) I would love to do flax seed oil, but I've been cautioned about that because she has a sesame seed allergy. We do try to get the evening primrose oil rubbed on her nightly so as to get the omega 3's into her system.<br><br>
I'd love to see what "scary" links show up.
 

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Our allergist doesn't like elidel because of the cancer warning.<br><br>
When we were desperate and before we knew what was causing dd's allergies, I used a prescription steroid cream (very sparingly) and also otc hydrocortisone cream. Thankfully, we don't have to use them any more, but I remember a few horrible nights when I was so grateful for them.
 

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Several years ago when this was px'd for my DS (he was under 1) I went and researched the actual FDA transcripts where various MD's and panel member discussed it being used on young children. Even they were shocked that it would be used with all the risks it entails for a condition that wasn't life threatening.<br><br>
It is an immunosuppressant. Young bodies absorb more compared to the amount applied to a smaller body and get higher blood levels of the drug.... <b>therefore babies get megadoses</b>. Plus the immune system of a child is not like an adult's, it is still developing. With a child that is already exhibiting a damaged immune system, why would you want to suppress it further?<br><br>
Yes, many think suppressing rather than addressing root cause of allergies leads to development of The Allergy March, leading to asthma.<br><br>
Have you tried bifidobacteria several times/day to correct gut flora... that is the foundation of a babe's immature immune system and acts as a gatekeeper, sealing up the gut. Yeast issues, antibiotics, vaccines, undigestible food, etc. etc. mess with gut flora and starts the allergy process.<br><br><br>
It might already be too late and there are more food allergies than dairy present. When did eczema start? What is she eating?
 

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Thank you Jane. It doesn't solve the root of the problem, it's just a very expensive mask. Think about it, the FDA approves some scary stuff so if they give it their highest warning level *and* the Elidel pamphlet itself warns repeatedly not to use it on children under 2, there must be some serious potential for harm.
 

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Dermatologists are famous for treating the symptom and not looking for the cause.<br><br>
We used elidel several years ago, before the black box warning, on our youngest child who was then under two. It worked. And I will <i>never</i> use it again. It's not worth it. I don't want to say in ten, fifteen years, "yes, honey, we read the warnings, but we didn't really think it was <i>that</i> dangerous..."<br><br>
What worked even better for us than elidel was identifying and strictly eliminating all of his food allergies, including what was in soaps and lotions. He has well over 20 food allergies (dairy, corn, wheat, soy, egg, peanut, tree nut, apple, banana, avocado, barley, quinoa, coconut...etc...etc...) and it wasn't easy and it required a huge lifestyle change, but I definitely recommend searching down the cause and eliminating that instead of masking the symptom with something that could lead to something even worse down the road.
 

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I had not thought about our experience with Elidel in about 3 years... It was prescribed for my 4mo old daughter for a eczema type rash. No one even attempted to figure out what was behind it. I was told that it would not hurt her, that a 2yr old could eat a tube of it and be fine.... (SERIOUSLY) We used it for 2 days until I wizened up and read the box... we stopped after I found the scary articles and noticed it said "not for under age two". I have no idea still what was up with my daughter, I suspect that whatever it was would have gone away on it's own. (She was extremely sensitive to diaper wipes, even the sensitive kind...)<br>
Fast forward to my son... he had bad cradle crap and oozing behind his ears (at times it was so raw as to be nearly no skin). When pregnant with him I had a mysterious painful itchy rash in my armpits (it went away shortly before birth). We figured out what was wrong at about 6 months... he is a Celiac. He is grossly intolerant to gluten. My armpit rash? Dermatitis Herpetiformis... otherwise know as Celiac on the skin. It is rare in the armpit, hence why no one could recognize it. Olive oil helped, and was the only thing that helped.<br>
As for Jack, he healed completely as soon as I came off wheat for a week. We saw immediate improvement. (Green mucous stools as well as the skin conditions and nursing issues... I never considered them as one thing, but they were.) It was bothering him via my milk. I am blessed that we were able to isolate the cause so early and before we took other measures that might have made things much worse. A gluten sensitivity represses the immune system. I can not imagine what damage something like Elidel could have caused him.<br>
Milk is a biggie, but so is wheat. I would urge you to find relief by finding the cause. Try wheat, you have nothing to loose.<br>
Elidel, well, you potentially have things to loose there.<br>
I sincerely hope this helps at least some, and that your angel finds relief soon. Hugs mama!
 

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We used it for my daughter's eczema...I'm trying to remember (it was a bit ago) but I think I decided it was what we needed at the time.<br><br>
Have you done official allergy testing? (Skin and blood) I'm a firm believer that eczema like that is usually caused by an allergy. True both for me (wheat) my daughter (milk) and my niece (eggs).<br><br>
Hope she'll get better soon!
 

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we use it...i've done my research, and i'm quite happy with my decision.<br><br>
elidel works by suspending the immune system response AT THE SITE. it does NOT shut down the immune system elsewhere...just where the kiddo's own system is attacking his/her skin.<br><br>
you do have to be more careful with germs, to prevent them from getting through...since that area can't defend itself quite so well. bactroban comes in handy as a back-up.<br><br>
my daughter's skin is literally thickened in places from her severe eczema. with her sensory issues, it's quite painful for her. elidel is a life-saver, and it's steroid-free.
 

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Hello, my DS had terrible eczema and the ped did try to prescribe Elidel...the Rx was in one had and the cancer warning in the other. I agree with some of the other posters that said this is not a good sign. However, I know how horrible the problem is and how I was <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/dizzy.gif" style="border:0px solid;" title="Dizzy">: trying to find an answer. Here's what worked for me...I went to a naturopath that specialized in dealing with children. She gave my son Black Seed Current Oil and Cedar of Lebanon (from Gemmotherapy). I also gave him fresh flax seed ground up before using in his yogurt. After a few weeks his eczema was gone.<br><br>
I hope you find something that helps... I will keep your family in my prayers.
 

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Discussion Starter · #15 ·
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<div>Originally Posted by <strong>mykidsmyworld</strong> <a href="/community/forum/post/9071904"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Can I ask if your dd is vaccinated?</div>
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Delayed and selective, but yes she has had several vaxes.
 

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OP, do you know what your dd is allergic to? A dermatologist isn't going to be concerned with finding the cause of the eczema; they're just going to treat the symptoms. You might consider a pediatric allergist, though your dc is young to have allergy testing (it's not very accurate in infants/toddlers). But the most accurate would be to do an elimination diet and food diary. If you want to learn more, come over to the allergies sub-forum. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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Discussion Starter · #17 ·
<div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>Chinese Pistache</strong> <a href="/community/forum/post/9074074"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">OP, do you know what your dd is allergic to? ... the most accurate would be to do an elimination diet and food diary.</div>
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I have already eliminated dairy for a month with no change in her eczema. Next is gluten. I have been on the allergy forum to discuss this, but do you know how long it takes gluten to leave you system? If you do, please post the answer in my <a href="http://www.mothering.com/discussions/showthread.php?t=742947" target="_blank">allergy post</a>.<br><br><img alt="" class="inlineimg" src="/img/vbsmilies/smilies/thanks.gif" style="border:0px solid;" title="thanks">
 

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<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
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<div>Originally Posted by <strong>Jaimee</strong> <a href="/community/forum/post/9073755"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Delayed and selective, but yes she has had several vaxes.</div>
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I was in the same position as you when my ds was her age, I tried everything under the sun and it only helped either temporarily or just a little, I ended up having him patch tested and then took him to see a naturopath doctor, it turns out he was allergic to several ingredients in the vaccine's as well as foods and enviromental, the ND started him on a treatment that balanced his gut flora and helped his body eliminate the toxins from the vaccine, I don't recommend going at it alone though but with help from a proffesional you might see awesome results, my son is two years old now and we started the treatments about 5 months ago, I can't believe how far he has come, I try to keep his immune system strong, I buy organic when I can, don't give any sugar, he takes fish oil as well and I load him up on healthy veggies and fruits.<br>
There is so much you can do to help and I know every child is different but a naturopath might be able to get you on the right road...<br>
P.S. when doing an elimination diet it could take 2-3 months for results to show, keeping a journal of everything she is eating and coming into contact with will help, also when having the vax's done journal how she was before and after, you may notice that it gets worse after vaxing?<br><br>
I was trying to insert pic's of him before and after but I can't figure out how<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/blush.gif" style="border:0px solid;" title="blush"><br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I hope she gets better soon, I know what a horrible and frustrating road it is.
 

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We unfortunately gave elidel to my son for a while in his first year - I looked up some of the risks on my own (the doctor said it was fine), but we just didn't know what to do with his oozing, raw rash. We used the tiniest bit we could, for the shortest time that was effective. It always worked, and he's shown no ill effects, but it felt like a huge risk.<br><br>
It took me getting his medical records to notice the correlation, but he was getting the rash after each set of shots. It would be finally clearing up, then time for more shots. Now that we're better educated and delaying more and more, he hasn't had any shots, or any rash, since he was a year old.<br><br>
hapersmion
 
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