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View Full Version : In desperate need of help with horrible infant skin problems



Splash
12-30-2005, 04:39 PM
Hey folks.
Charlie is five months old now, and since birth he has had these two spots on his face that are always 'there' but are occasionally oozing and raw, and occasionally just... there.
When he was about 2.5 months, the rash was all over his face, and he was diagnosed with eczema.
At 3 months, it was on his lower legs and upper arms. Still eczema. It was also REALLY oozing on his face and scalp and the ones on his legs were bleeding.
At 3.5 months it was showing up on his belly and back, and his face, neck, and scalp were horribly red and raw.
At four months, he saw a dermatologist for the first time. He was prescribed a bunch of creams that did nothing but get him addicted. The rash continued to get worse. Some days he is all over itchy and oozing, other days you can only see slight pink spots on his face, and some dry skin.
They've ruled out eczema, psoriasis, impetigo... they've RAST tested him. Yesterday they told us he was allergic to cats (we have three) but it turns out the tech read the results wrong (I am so angry about this... all day I was heartbroken about possibly losing my kitties, for nothing to be wrong with him!) and even IF something shows up, RAST testing in infants is pretty useless.
He's been on ellidel, on steroids, on moisturizers... we've eliminated high allergens from his diet (breast milk only so far), we super hot wash his diapers and rinse all detergent out of them. We don't use detergent at all on other things, just hot water. We don't use soap on his skin, only olive oil or the medicated stuff from the derm.
He has seen FOURTEEN dermatologists (three practices) and everyone is sure that it is SOME KIND of skin condition (not allergies) but since one rash looks like every other rash, they haven't been able to pin it down.

It comes and goes with NO obvious triggers. It gets worse when he cries and at night. It is not affected by the sun or the temperature. No amount of lotion seems to get rid or the dryness. No one in Jean's family has any allergies (except her sister to penicillin) and no one in the donor's immediate family (mother, father, grandparents, siblings, and other children) have any allergies. No one has ever had any skin conditions beyond simple childhood dry skin and eczema. He is not vaccinated and he is not circumcised (I'm giving any and all info, even if it's useless). We cosleep and he nurses quite often. He comfort nurses from me as well.
Jean's prenatal care was from a midwife and he was a planned home birth. He became an emergency c-section and was born at 11 1/2 pounds. He was on IV antibiotics for the first four days after his birth due to suspected GBS (we didn't want it... but we were not allowed to refuse it, and really, at that point it would not have taken much to scare us into them). He did not receive triple abx ointment in his eyes but he did get a Vit K shot.

We've done creams, antibiotics, steroids, lotions... we've put him to sleep in WET pajamas to super soak his skin and the slathered him with mineral oil the next morning.

He gets only breast milk. He is 100% cloth diapered (mostly cotton, but he does have some fleece and suedecloth, and we use a fleece liner at night for dryness.
We bathe him in warm (not hot) water and immediately lotion him up while his skin is still wet. We pat dry, no rubbing. He gets Aveeno on his face and scalp 5-6 times a day and all over his body about 3 times a day, and he gets Elta (massive heavy duty moisturizer) at night.

He's going to a hoo doo doctor today. I have no faith in this guy, he is (IMO) a total fruitcake. But, my partner's boss believes in him and REALLY wants Charlie to see him, and she is paying for all of it. However, if this guy WORKS... well, I'll have changed my opinion!

Does anyone have ANY ideas as to what it might be? I have great faith in (most) doctors but at this point the doctors are failing us, and him. We need to find something that is causing this... or at least something to soothe him.

Thanks for any advice you can give, and just making it through the entire post!
E

alleyoop
12-30-2005, 05:55 PM
I have no ideas for you, but wanted to send you a big hug. Hang in there mama!

KBecks
12-30-2005, 05:58 PM
I'm thinking that over-bathing could aggravate the dryness.

How is his health otherwise?

I'd think allergies too... has your partner tried modifying her diet?

I'd also suggest scouring the internet for any possible clues.

I'd also suggest you keep a log of when he is doing better and when he is doing worse... along with notes on what he's eating, when he gets baths, when he gets lotions applied, etc. It might give you more clues.

Good luck!

Sillygirl
12-30-2005, 06:30 PM
No clue what it could be - I can't imagine how frustrating and scary this must be for you all.

My only bit of advice would be, if you haven't already, and you have the means, to take him to a large university hospital practice. That should give you access to the leaders in the field, not just fourteen assorted community doctors. Not to disparage community docs, but when the true mystery comes up, you want the mystery solvers on your case.

Splash
12-30-2005, 07:06 PM
All Children's is five minutes from here... he was BORN at Bayfront which is partnered with All Children's. It's a wonderful hospital.
With a wait list of about 8 months to see a derm.
We're seeing a dermatologist/allergist next Friday... he's supposed to be the 'best' and his waiting list is over ONE YEAR LONG but we got some MAJOR strings pulled and he is willing to see us.
We've eliminated everything we can think of. Nothing helps.
If the doc we see on Friday doesn't help... our only option is to take him to the All Children's ER and have him admitted to the hospital :( . We don't want to do that... but it would get him seen.
We bathe him probably every other day or so. Lotion IMMEDIATELY after he gets out. Bathing is actually GOOD for dry skin if you apply moisturizer while the skin is still damp. And bathing is about the only thing that soothes the poor boy.
I'm just putting it out to everyone I can think of in case SOMETHING sounds familiar to someone...
Thanks for the hugs.

JFC
12-30-2005, 07:26 PM
((((HUGS!!!))) How frustrating not to know what is causing this...

I have to second keeping a log of everything. It seems silly sometimes, but it can help establish a pattern and highlight something overlooked. It can also be helpful to bring to your Dr. appointment - maybe they'll see something in the pattern that would be missed otherwise.

Good luck! :-)

bcky2
12-30-2005, 07:49 PM
there was a family in canada that had a little girl that had some sort of skin condition that was rare and very expensive for them to treat. they had pictures of her and her story and i think on ebay you could buy a thank you card or a baseball card or something like that and basically you were donating money to help cure the little girl of this horrible dry skin kinda like eczema but worse. does anyone here remember this??? it sound to me kinda like what charlie is going thru if i remember correctly. i think that someone here posted a link to it. i did donate some money to them. i will try and see what i can find out and post the link if i can find one, unless someone here beats me to it :)

eta-i found her email addy and name in my paypal account and she is a vaid person on ebay but because i only have her email addy and not her user id they will not give me her user id or any current auctions she has going!!

FOUND IT(what a long search list!) i guess it is a little different then what your going thru.
http://cgi3.ebay.com/ws/eBayISAPI.dll?ViewUserPage&userid=anteros911

smallestangel
12-30-2005, 08:41 PM
I have no idea either but wanted to offer my support. My son had REALLY bad eczema, especially on his face, when he was smaller. I know how hard it is not knowing what's happening, what's causing it. We also used elidel, protopic, aquaphor, prescription hdyrocortisone (I forget what that was called).

One thought I had was maybe you're doing too much? We were using a host of things and noticed that it was just making it worse after awhile. His eczema was also caused by many food allergies we later found out. Once we took care of the diet and streamlined his treatment, things calmed waaay down.

Now, many, many months later things are fine. He turned out to be allergic to dairy, eggs, nuts, & shellfish. A bath every couple of days with Cetaphil. Eucurin calming cream after bath and before getting dressed in the morning and a little cortaid behind the knees and on the elbows when it gets bad, which isn't often. Not a lot of products or routines.

Hugs to all of you and here's hoping you find some answers quick! And that your babe outgrows it. I know how hard it is to see your little guy like that.

Keep us updated!


Amanda

jamsmu
12-30-2005, 09:06 PM
Awww... poor Charlie... and poor you!! Just wanted to send e-hugs. Hope all goes well with one of these doctors. And admitting to the hospital, while not ideal to deal with, maybe very helpful. Like another poster mentioned, they'll work to solce the problem. Please keep us updated.

Splash
12-30-2005, 09:07 PM
Oh gosh... I need to go read all of that because those pictures... it looks so much like him. I just looked at the pics but not I am definitely going to read the story and see if any of it lines up. THAT is what Charlie looks like on a bad day. Not everyday, but when it's really bad, he looks JUST LIKE THAT.
I'll repost to let you know if the written part adds up as well. THANK YOU SO MUCH!

Splash
12-30-2005, 09:35 PM
Thank you so so much for this link!
I read the kid's story and it sounds so much like Charlie. The pictures... especially of the mottling on her back and the scaling around her eyes, look so much like him.
I'll be googling Ichthyosis all night. Might not be what it is... statistics would say that is probably ISN'T that. But so far no one has found anything, and since it says this is really rare, hell, maybe? I hate to sound excited about it, because it sounds dreadful, BUT TREATABLE. But for months we've been floundering and this is the FIRST thing that came anywhere close to matching up. Thank you thank you thank you!

ilovetivo
12-30-2005, 09:59 PM
I just want to say my heart goes out to you and your family! I hope you find what's going on quickly and it's treatable! Maybe the Ichthyosis will be it. If so, these boards continue to be amazing! Let us know what you find out and how things are going.

mommy_someday
12-30-2005, 10:20 PM
Splash, I just looked at the pics on the link that Becky posted and all I can say is poor Charlie! Oh my goodness, what he (and YOU) must be going through, even if it isn't ichthyosis! I hope you get some answers soon and some help for your sweet baby boy. Many hugs to you, DP and Charlie. You will all be in my thoughts. :)

cara1
12-30-2005, 10:44 PM
Has he seen a PEDIATARIC dermatologist? This could be invaluable. Also, is this big guru a dermatologist or an allergist? If really an allergist, be careful that you aren't going down the wrong road. This may have nothing to do with allergies at all... Also, in terms of admitting him to the hospital, think twice. First of all, dermatologists see hospitalized patients for acute emergencies, not ongoing chronic problems. Secondly (and perhaps more importantly), if his skin is so open and weepy, he would be at serious risk of a hospital-acquired skin infection that you would not want him to get. If there really is a big guru that might help him, one of the derms you are already seeing should call him and insist he get in sooner. For a child that is suffering like Charlie, it would be practically unheard of for a subspecialist to refuse such a request from another physician. Best of luck.

cara1
12-30-2005, 11:47 PM
Hi. I'm Cara's husband and I'm a dermatologist. Even if your son merely has atopic dermatitis that is difficult to manage, he still needs expert advice on care and treatment. Moreover, for difficult pediatric cases, you really need a pediatric dermatologist. This a dermatologist who has subspecialty training in peds derm; not just a dermatologist who also sees kids. Lastly, your best bet is to see someone at an academic medical center. These folks are going to be the most up to date on the latest therapies and rare disorders.

At the University of Miami, you could try to see Lawrence A. Schachner, M.D., who is the chairperson. If this is too far for you, please email back your city of residence and I can ask around.

Good luck.

lisams
12-31-2005, 01:17 AM
I hope you find some answers and are able to get him in sooner to see the specialists. This must be so frustrating for you, I hope you're able to find something that works soon.

starrynight
12-31-2005, 05:38 PM
The things that caused eczema in my kids' were/are disposable diapers (I know you said cloth), baby soaps/scented soap and milk. He can still get dairy through breastmilk so try a dairy free diet for a few weeks, it takes a while to get it out of the system (up to 6 weeks). It could be the fleece in the diapers, it seems odd to have the rash anywhere besides his bum if that is the case but anything is possible.

Also what type of soap in the tub? One of my kids' (the one that had the worst eczema) can't use any thing at all except aquaphor and dove soap. No other lotions, even aveeno bugs her (the oats I assume?) no other soaps and we are fine, she gets a touch of anything else and she breaks out and gets itchy. Also she can't use free and clear detergent, you would think it would help but nope!! It's really weird, I can only use purex or tide on her stuff. I wonder if it's something in the water where you live because I just re-read where you mentioned no soap on his clothing and how much you rinse the diapers...

How long have you been using the olive oil on his skin and does it make things better or the same or worse?

TraciG
01-01-2006, 02:53 PM
Poor baby, I hope you find out what it is soon so he will feel better !

Just offering more support !

Splash
01-02-2006, 01:47 PM
We thought about the water (like from bathing in it) but it's mostly on his face and scalp, not on his butt, groin, upper legs, etc. So it's not in places that soak in the water, like we would expect.
He's been bathed with olive oil or olive oil soap since birth. He was also bathed for a while with CeraVe which is a rx soap, similar to cetaphil. Neither seem to really affect him at all.
He saw a hoo doo doctor on Friday that gave him some bizarre concoction... and it seems to have helped. His skin is quite clear right now. But, it's happened before that it would clear up for a few days for no reason, and then flare up again. So it's probably just a coincidence.
This Friday he sees the new dermatologist. Hopefully he can find something. It was a really impassioned plea to get him into this guy... he returns from vacation on Thursday and will see Charlie Friday morning. Seeing as how his waitlist is a year long, I know some major strings were pulled to get Charlie into him. I'm not complaining, I just want my baby better!
Thanks for all the ideas from everyone. I'll let you guys know how his visit goes on Friday!

Melanie
01-02-2006, 07:11 PM
I hope Charlie's skin stays clear. My Ds had some eczema, but it really sounds like your little guy is suffering from so much more than that.

rfeibelm
01-02-2006, 07:56 PM
I know you've tried everything and I really feel for you! I can't imagine how horrible it feels to watch poor Charlie suffering. Have you tried an elimination diet for yourself, since you're nursing? I think I read it on Dr. Sears' website. It's something like 5 foods, with no dairy, no egg, etc for 2 weeks.

Rachel
Benjamin 3/25/04