OT - Elidel: Eczema treatment

[Questlove]

I just made a search and found that Elidel is suspected of causing skin cancer. My dd5 was just diagnosed with Eczema and was prescribed Elidel. Does anyone continue to use Elidel knowing this info stated by the FDA. I am a little nervous about using this product and was hoping on feedback from other parents. She was using a steroid but that does not to have any effect on her which is why Elidel is being prescribed. Thank you so much for your insights.

 

[DiznEeyore]

My ds was also using Elidel when I read about the cancer concerns. Another mom suggested trying Eucerin cream (the really thick stuff that comes in a tub) immediately following a bath/shower. When my son uses it regularly, his eczema remains very controlled and he hasn't had to use the Elidel in over year. Of course, there's no way to know if something like that would work for your dd ... have you talked over your concerns and possible alternatives with your doctor?

 

[DVCLiz]

I use this and my dermatologist wasn't concerned. I apply it topically and she seemed to think it was safe used in that way. I use it sporadically for a dermatitis issue.

 

[rkandmjsmommy]

My son has exzema, we were using Elidel and it worked GREAT, but the warning did scare me. Now when it flares up we use regular hydrocortisone cream, and it seems to work well for him. I have also hear WONDERFUL things about Eucerin cream

 

[willoughbyclan]

My DD13 has been using this cream since it first came out 2-3 yrs ago? We just recently had this conversation w/her pediatrician. He was concerned for her long term use, how often and how much she used of it with each outbreak. He requested that she only use it in very severe times when everything else wasn't working. I also have read about the skin cancer relation and was all for her using it sparingly. The thing is, my DD has ezcema over a pretty good portion of her body, not just contained in one or two areas so she was using quite a bit.

Do a search on these boards, budget board to be precise. I did that when the ped recommended she cut back and found several threads with lots of advice on things that had worked for other folks. We currently are trying the cod liver oil supplement every day and a Crisco rub down after showering when she flares up. Been doing this for about a mth or so. Pretty soon we should know if it's going to work or not.

 

[Questlove]

I have tried Eucerin but it does not work for her. Her tummy actually started to break out with small little red pimples after using that. She started scratching so hard that she was basically ripping her skin apart. I felt horrible. I used the steroid to control the itch and it helped. I use Vaseline on her and it does help alot but the doctor suggested the Elidel to treat it.

 

[Questlove]

My DD13 has been using this cream since it first came out 2-3 yrs ago? We just recently had this conversation w/her pediatrician. He was concerned for her long term use, how often and how much she used of it with each outbreak. He requested that she only use it in very severe times when everything else wasn't working. I also have read about the skin cancer relation and was all for her using it sparingly. The thing is, my DD has ezcema over a pretty good portion of her body, not just contained in one or two areas so she was using quite a bit.

Do a search on these boards, budget board to be precise. I did that when the ped recommended she cut back and found several threads with lots of advice on things that had worked for other folks. We currently are trying the cod liver oil supplement every day and a Crisco rub down after showering when she flares up. Been doing this for about a mth or so. Pretty soon we should know if it's going to work or not.

cod liver oil, crisco...wow never heard of this. Tell me more, LOL. Do you use it together? What exactly do u mean by supplement? Supplement to what else? Sorry for all the questions.

 

[bellarella]

I wouldn't use Elidel. There are other RX steroidal creams that do not have the same issues as Elidel that your doctor should be able to prescribe. My DS was given samples of Elidel by his ped (before the study came out) but when we went to a pediatric dermatologist, we were given a different cream that has be very effective (desodide?)

 

[nuttylawprofessor]

I have tried Eucerin but it does not work for her. Her tummy actually started to break out with small little red pimples after using that. She started scratching so hard that she was basically ripping her skin apart. I felt horrible. I used the steroid to control the itch and it helped. I use Vaseline on her and it does help alot but the doctor suggested the Elidel to treat it.

That sounds like my little one's sensitivity to Lanolin. We followed a tip I found on these boards recently and started to give him baths with sea salt. The results have been amazing. We also use the Gold Bond Ultimate Healing Lotion after bath, and his skin is looking better every day.

My DS has had ecz. since birth. His pediatrician gave us the scrip for the Ellidel and I didn't fill it or use it because it just felt wrong to me with such a little guy. Over the next two appointments, the doctor convinced me to use it and we did. By the next appointment a few months later, the study came out, Ellidel got the black label warning, and the doctor told us to stop using it.

FWIW, keeping the house humidified, doing a salt bath, and using the healing lotion has been the most successful treatment that we've found.

 

[mrsbornkuntry]

I hadn't heard of using Elidel on children, is it a steroid cream? My son was on a steroid cream when his was severe and linked to graft-versus-host disease after a stem cell transplant, but now that it is just considered eczema we use eucerin cream after his baths as others mentioned and hydrocortisone when it flares up. His doctor told me that it is linked to allergies (maybe just with him because he also gets a runny nose with his) and prescribed Zyrtec so I keep him on that during the seasons that his allergies bother him and it keeps it under control. He doesn't use it at all during the summer and his eczema doesn't bother him then.

His doctor said he wanted to avoid steroid creams as much as possible because after a long period of use (I think he was talking years) they can thin the skin.

Keep in mind, this is just what I was told, I'm not a doctor or anything so I may not know what I'm talking about .

 

[HelenePA]

All of my kids have Eczema (thanks to dh's side of the family) my dr give me this "recipie" mix hydrocortisone and eucerin in equal parts if you'd like add some vasiline in it so it wont wear off. Do it RIGHT after a bath and it will help keeps some of the moisture in also... dont over bath the kids it will make it worse, If you can only give baths when needed, not daily.

 

[kmk160]

My kids both have eczema and when ds was about 1 yr old, he was given Ellidel.
I used it primarily in one spot on his lower leg and he began to develop a small, but very visible, patch of dark hair in the spot where we were using the cream.
The pediatrician had us stop the cream and thinks that maybe the steroid in it caused that hair growth. The hair is still there on his leg and he is about a month shy of being 4.
For my daughter, I use Eucerin sometimes but actually found (after trying what feels like a zillion things) a lotion called California Baby works the best.
They do have a website but can also be found at some Target stores.
Its pricey, but worked great for us!

 

[KristiA]

All three of my kids battle with eczema. My son has it the worst and usually a spot treatment with hydrocortisone and then a slather of the Eucerin cream in the tub works great. I put these on within minutes of getting out of the tub. I have tried several prescription creams, but I think the Hydrocortisone works well.

 

[Gillian]

My kids both have eczema and when ds was about 1 yr old, he was given Ellidel.
I used it primarily in one spot on his lower leg and he began to develop a small, but very visible, patch of dark hair in the spot where we were using the cream.
The pediatrician had us stop the cream and thinks that maybe the steroid in it caused that hair growth. The hair is still there on his leg and he is about a month shy of being 4.
For my daughter, I use Eucerin sometimes but actually found (after trying what feels like a zillion things) a lotion called California Baby works the best.
They do have a website but can also be found at some Target stores.
Its pricey, but worked great for us!

I have no idea what caused the hair growth, but I'm pretty sure Elidel is not a steroid. Still strange, and enough to make me stop using it, though.

 

[Gillian]

cod liver oil, crisco...wow never heard of this. Tell me more, LOL. Do you use it together? What exactly do u mean by supplement? Supplement to what else? Sorry for all the questions.

I'm not questlove, but generally when you say "supplement" it means in addition to whatever you eat. It's probably because of the omega-3 fatty acids in it. I think you can get cod liver oil as a liquid. Most of the others types are in capsule form.

I'm not the expert on this stuff, but it's worth looking into.

I hadn't heard of using Elidel on children, is it a steroid cream? My son was on a steroid cream when his was severe and linked to graft-versus-host disease after a stem cell transplant, but now that it is just considered eczema we use eucerin cream after his baths as others mentioned and hydrocortisone when it flares up. His doctor told me that it is linked to allergies (maybe just with him because he also gets a runny nose with his) and prescribed Zyrtec so I keep him on that during the seasons that his allergies bother him and it keeps it under control. He doesn't use it at all during the summer and his eczema doesn't bother him then.

Elidel (I'm almost positive) is not a corticosteroid like hyrocortisone. It's for over age 2, for non-continuous use. It's a second-line therapy, which means that it's not the first thing you should try. It's only if the standard treatments don't work.

I'm not a Dr either, just an out of practice pharmacist.

 

[AnnaS]

I had also replied to a previous thread about ezcema. All the above were mentioned.

Winter - cool humidifier in room
warm baths/showers every other night & pat dry
use eucerin lotion right away after drying (apply a few times a day or vaseline).
Wash with Basis soap
ALSO VERY IMPORTANT WHICH I THINK HELPED TREMENDOUSLY - especially during the winter months 100% COTTON CLOTHING ONLY (I ended up buying practically a whole new wardrobe for my dd - cothing costs more money - but worth it - ESPECIALLY PJS AT NIGHT - the material lets the skin "breathe" or something better). Try it.

 

[HamTown]

Elidel is not a steroid. It is in a family of medications that is sometimes used to treat autoimmune diseases. When it was first discovered, they were trying it for just about everything.

It has never been approved for children under two. Our former pediatrician gave me samples and a prescription for my 15 mo daughter with mild to moderate excema. I felt uncomfortable with that so I made an appointment with a pediatric dermatologist. She gave me Aclovate ointment (a steroid) and told me to use oatmeal baths, the heaviest cream moisturizer I could find (Cetaphil was recommended) and to give dye-free Benadryl at a slightly higher than normal dose if the itching at night was keeping DD from sleeping. She agreed that Elidel was not necessary for my DD.

If you haven't seen a dermatologist, try that. As wonderful as pediatricians are, they don't always have all the answers.


* I forgot about 100% cotton, AnnaS. My 15 mo DD was unzipping her fleece pajamas and taking them off after we put her to bed because they were making her so uncomfortable. Once we switched to all cotton (which were very hard to find in the winter), it really helped. No more naked baby in the crib in January!
Excema is at least tangentially related to allergies so if traditional remedies aren't helping, maybe you could try a visit with a pediatric allergist.

 

[kmk160]

I apologize for misspeaking and saying that it was a steroid.
After discussing it at great length with my pediatrician, I must have confused another conversation with the one regarding the Elidel.
Again, apologize for that but the medication did in fact not agree with my son's skin.

 

[mapmakerj]

My DS uses Ellidel only when a bad flare up occurs, sparingly and just on the spots. I did talk with his ped regarding the cancer study and he assured me that he was not concerned by the study and was still using it on his own kids. He said the amount of cream used in the study was an astronomical amount compaired to what you would use in a normal application. He said it was something equivalent to using a tube a day on your child for several continuous months, which is obviously way more cream then anyone would ever use. He likened it to the saccarine scare of the 70's where the amount given to rats would be like a human consuming a boxcar load in a day.

 

[momtofour]

For those of you that are recommending the Eucerin lotion, could you please specify which product you are referring to? I purchased the Aquaphor with 41% Petrolatum and have just started using it with little success. Please clarify. Thanks!