20 mth old with "rare" full body eczema

[bellwalker]

I am so confused & frustrated, I am sure many of you have gone through isses with diagnosing your skin disorder... so I thought I would come here. Maybe one of you may have some helpful information./

My son is 20 mths old, at around 4-6 mths he started to get severe diaper rashes. The dermatologist explained that it was most likely eczema and started to give us all different steriod creams until one finally work. It would typically clear up and then flare up the next month. I was getting so frustrated with the high amount of steriods I was using on him that I decided to stop seeking treatment and just try to control it at home.

The flare ups lasted about 1-2 weeks and came back every month/2 months. Usually only in the diaper area and sometimes it would go up his back. In the beginning of September the rash came back this time, but instead of being in the diaper area, it was on his torso. It quickly spread throughout his full torso, his back, his arms, his neck, a little on his face and on his legs. We went back to the same dermatologist (only seing the PA because they felt no need to have us see the Derm) and he gave us new creams to try. He showed NO concern. After the creams didn't work we went back to our Ped who freaked out. He got us an emergency appointment with the allergist & a new derm (out of network). The new Derm believes it is a very RARE extreme eczema, and the allergist was very upset it they haven't done a biopsy (the Derms think I should wait some more). His blood work came back as negative from the Allergist except for two parts of the Celiac disease test came back low. They've asked me to just have him retested next year.

The problem I'm having: certian steriods will help the rash and the flare up, however, once i discontinue them it comes back. I'm frustrated & overwhelmed. When I look online for similiar stories or pictures, I'm not finding many or pretty much any at all. I don't know what to do for a next step. It seems like no one knows for sure what to do & so they aren't doing anything.

I would love some feedback. Any advice you may have would be wonderful. We don't have a family history of eczema so I'm highly confused by ways to treat it. I've been following the general no fragrences, all natural laundry soap, he hardly takes baths and when he does he use Cetaphil for body wash (unless extremly dirty). There was no change in his diet or environment when this last rash showed up. Im literally lost.

I'm attaching a picture from last week (since now it's looking better with the new steriod cream). This was not the height of the rash/eczema, but it should give you a pretty clear idea of what it looks like:



Again, thank you for any & all feedback. I just want him to get better.

P.S. It is not constantly itchy, just on occassion. It's more uncomfortable. It will keep him up at night.

[ajaj]

Hello,
have you tried putting the steroid creams in the fridge?

Best wishes

[carol]

That looks like hives to me. I am 41 and have severe eczema. I get hives when I'm too hot, Way stressed, and with food allergies. You sure he's not having food reactions? Does it have heat in it? I take Benadryl, Tylenol and cool the room and wrap in a sheet. I know he's young. Staying cool is major for me. Red dye in foods makes me have hives. Eczema is so hard to treat,all cases are different. I have break outs over most of my body somewhere,sometime. I am allergic to Prednisone. I can only use a cream based medicine not an ointment based, that makes a difference with me. I know how it hurts, so I wish you luck.

[AnnaB]

Our general rule for my children is to use the steroids for upto a week to 10 days to bring bad eczema under control, then treat the bad areas every weekend if the skin is good or bad to stop it from flaring "weekend therapy".

Does your son take an antihistamine my son takes one every day all year round.

As an alternative where steroids fail my children also have immuno modulating creams. Worth asking about.

Have you been offered wet wrapping or derma silk suits? There are so many options out there, but unfortunately this is the massive problem with eczema. There is never a clear picture of the cause of flares. Flares can come up in hours I can drop my son off in the morning at school fine and he can be in a real mess by the end of the day. What works one day to clear it fails to touch it the next week. This is all part of the difficult nature of eczema. You need good flexible medical support. Get tests for all food allergies and skin patch tests for all the creams. Then find a support network, like here and some friends around you and just keep going.

Make sure your laundry powder is non- biological / enzyme free and protect against house dust mite.


Good luck

[sthomps]

actually i find that a 5-10 min soak in a lukewarm bath everyday works and (yuck) goop on the Vaseline. n one of my boys is allergic to eggs n i cut that out of diet. i see improvement in him. the other one still working on him. its not so much the rash that bothers me or seemingly him. its the intense itchiness he feels that breaks my heart. sometimes all i can do is soak him, pat him dry, glop on vaseline w/wo cortisteroids, and benadryl. and rub n rock him to sleep. sometimes thats everynight. n he's 7 yrs. i wonder often, how long?

[ellesea]

you should probably check what kind of detergent or creams you are using on him because this is what triggered my reactions. i used dreft soap in the US and fairy in UK.... but obviously everyone is different. powder version is best for me and i use less than what is recommended to be on the safe side. definitely don't use coloured liquid detergents, try and see if avoiding wool helps - as this can creep up in ingredients for creams such as linalool, linolene...

drenching the skin with water and layering vaseline does help but is messy.

hope this helps xx

[bellwalker]

Thank you ladies for all the info!

As for allergies, we just had him tested and everything came back negative (blood work) though he was borderline positive for Celiac Disease. The allergist wants him retested in a year but my ped recommends we try him on a glutten free diet now. We do give him Benadryl and another prescription similiar without ever seing any major results. Sometimes the redness goes down some, but nothing drastic.

We haven't found anything to irritate it, it just typically looks the same and spreads. If we have him on steriods, typically a combo of oral and cream (we're using cutivate right now) it is under control and almost completly gone. However, once I discontinue the steriods it comes back within 2-3 days.

I've recently started wraps, but they are hard to do on a little guy. I use vasoline and Aquaphora thick cream. I just stopped the steriods yesterday and we're waiting for the rash/eczema to come back completly. Then we will be doing a biopsy. I guess it does have an odd look to it, and the allergist doesn't think it's allergies and the doctors are all scratching their heads. So sad. It's horrible to watch your child suffer.

Thank you all for your feedback. I will let you know what happens. My heart goes out to each of you that are dealing with this also. I never realized how horrible it can get.

[AnnaB]

It is heart breaking. I have nursed both my 2 and 5 year olds since days of birth. I wet wrap them both. It is stressful for us all but I work fast and comfort once on. The problem with my little girl is she is very small for her age so get cold during the night, so the hopsital suggested wrapping her in the day which works well.

They were both weaned on a celioac free diet due to family with the condition and their eczema. Keep a close food diary and seek medical advice.

My son has had blood tests, skin prick tests and patch tests. When they all come up relatively clear it is good but at the same time a positive result would give us something to work with.

Removing all our capets and putting down wooden floors was certainly a big help. Worth the expense, as every visit to telatives flares their hands and feet which backs up our positive feelings at home.

anna