Some gems from the nurses:
~ One of them repeatedly referred to him as a "special angel." Ugh. Ugh. Did I mention ugh?
~ One of them commented on how "they're all so flexible and bendy!" And honestly, Finn has never been overly flexible. He's always had pretty good muscle tone and doesn't appear to have loose ligaments. But whatever, right? It's just the pigeon-holing him that bothers me.
~ The recovery room nurse, who talked in this extremely cheerful, sing-song voice, confided in me that she had a friend whose son "is Downs too." I just nodded with a dumb smile pasted to my face.
I mean, okay. These people were all being nice. They were kind to me and to Finn. So I kept asking myself why I was letting this stuff bother me. It's just words. Right? But here's the thing - here's the conclusion I've come to: if you're going to use stereotypical characterizations, if you're going to use outdated terminology, it tells me that you have outdated ideas and views of what people with Ds are really like. And that bothers me.
Anyway.
Okay, so Finn has developed this awful, bumpy dry skin, especially on his arms and legs. Joey had eczema when he was really little, so I wonder if it's that.
Also, he's currently got a terrible, terrible diaper rash. His poor little bottom is cherry red and prone to bleeding. Nothing in his diet has changed, so I can't really figure this out. I've been treating it with alternating A & D ointment and Triple Cream, but it only seems to help minorly and temporarily.
Suggestions for the dry skin and the diaper rash, please?
15 comments:
Glad to hear that everything went okay. Yes sometimes when Wysdom is in the hospital I have to deal with the same type of comments. Usually I just let it slide as the nurses are trying to be nice. I know one day I will say something but it hasn't come up yet. When I was in for a while at one hospital I did lend them my book Gifts at the front desk to look through. Who knows, I think it's just the generalization that get's to us. Anyways for dry skin or eczema you can use emu oil. It works awesome. Also there is a cream called Botanical from a health food store that has flax oil in it that is made for dry sensitive skin. We use both and Wysdom's face has done well after an ng for 11 months. Mmmm for diaper I can't remember the name but something high in Zinc. It maybe called bum paste or anything with 30%zinc. Hope this helps:)
Boudreaux’s Butt Paste. It works fairly well. And my mom says skin bumps are from a lack of zinc.
I use coconut oil (for cooking) as a massage oil on Summer. It is good for her skin, and smells good too.
I always just use a butt paste that has zinc in it. My daughters skin, like many kids with DS, is prone to excessive dryness and eczemalike/psoriasislike patches- especially in the winter. I learned Not to bathe her more than weekly, unless she had some particular issue to address, to only use moisturizing soap, avoid bath bubbles and to moisturize the hell out of her skin all winter. Kayli's skin on her chin and cheeks is especially vulnerable and in the winter I use Eucerin (basically Vaseline) 2x daily to stay on top of it. Once it gets patchy I use OTC cortisone based ointment sparingly 1x a day, sparingly until it is moving in the right direction. It's one of the things I find most frustrating! I will have to try the Emu oil that Sasha mentions! Good Luck! I think sometimes if it is cherry red it could be bacterial?
As for the nurses- I certainly try to educate folks as I go but I have less heat about it as I grow more comfortable with my daughter as she gets older.
May want to try a different bath wash/soap or lotion....
Both my kids, at different times when they were babies, all of a sudden developed an allergy to all Johnson & Johnson products... getting irritated, bumpy skin... so we had to switch to Baby Aveeno products and it worked wonders.... Now, they are fine with J&J products - weird how the skin works like that sometimes...
I second the Boudreax's
Glad to hear the surgery went well - is the rash on his bottom hot? Could it be a yeast infection? I know sometimes that happens and if the regular creams are not working it could be yeast. Just a thought. For the rough skin we use Hydrolatum and that seems to keep the moisture in.
i'm sorry those people were lacking somewhat in their social graces. people like that bug the heck out of me.
(but i never would have thought the "bendy" comment was Ds related...i figure all babies are like that...haha)
oh, my mom swore by Spermacida (sp?)...and yes, it's as gross as it sounds. It's only sold at pharmacies around here...not sure about there. but heard it works wonders. the lanisinoh we use for our cracked nips works good on dry skin around here...
I tried everything out there for Braeden, and one day in desperation tried Lansinoh Cream for nursing mothers and it worked awesome! His horrible rash was literally gone overnight!!
Hi Lisa, It is Joyce. It's been a while, I've been reading just no time to comment. So glad Finn's surgery is over for you. I agree, anytime you are handing them over, no matter how small in scope the operation seems, it is frightful. So many things can go wrong. I have absolutely no recommendations for the diaper rash as I am long past that stage:) I do have to say I laughed at "bendy." Havn't heard LMT described with that word - is that a word? Did you get your co-pays worked out ok? I was going to leave a message that day to let you know that often co-pays are not counted toward the "out-of-pocket" tallies but figured that was the last thing you needed to hear the day before surgery. I think of your often with all on your plate right now.
Hi Lisa-
I second the "yeast" idea- both of my babies get those every once in awhile. Our ped. suggested buying some Monistat and using the external cream that comes with it on the rash- it works like a charm.
Glad to hear all went well with the surgery. What a trooper Finn is. I use Mustela Stelatopia bath oil. Made specifically for excema so really good in the bath. I second the zinc too.
I also get annoyed/ tired of all the comments. A friend had a lady approach her the other day in front of her daughter and say "What a shame you've got a Downs." Luckily my friend is quick off the mark and replied "What a shame you're so old and wrinkled!". At least the people you were dealing with meant well :)
Lisa, for the dry skin could you try some olive oil? Yes, straight from your kitchen! It really softens the skin...Good luck with the toushy recovery- poor kiddo....
My cousin gave me what she and others say is the mother of all diaper rash creams, but she has to order it online. I'll post the name in the morning when Sheridan gets up.
Resinol - that's the name of the diaper rash cream my cousin and others have raved about it. The jar says you can ask a pharmacist to order it for you (my cousin bought it online). It's not a prescription, just not commonly carried, I guess.
Sorry, "bendy" cracked me up. I just kept thinking of those cheap plastic bendy toys that have the wires in them.
We have to do this procedure soon too. Lucas has a cyst above his eyebrow, I am not looking forward to it.
Oh and I HATE it when people refer to someone as "Downs". It bugs me more than anything. Even my Dad says it but I haven't the nerve to correct him yet.
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