Post by bobthebuilder on Mar 26, 2015 21:37:11 GMT -5
sorry mine has had full allergy testing not even sure that it's eczema for us.. good luck! push the derm and poss allergy testing. The allergy testing was nasty but helped. Allergist did not test for food allergies (age 3). Current cocktail - singular, zyrtec, cerave and steriod creams as needed... dx - seasonal allergies, dogs, cats, dust... I use homemade laundry soap and fragrance free everything. kid is a mess but at least I can attempt to control it... possible asthma dx but for now at age 5 I work to keep everything cleared up. Honestly its a daily experiment poor kid can't win. Just keep pushing for the referrals - change doc's if necessary. Kids need to be comfortable. None of the they'll grow out of it bs! Yes they may grow out of it but ask the pedi if they'd like have the same problem and just wait to grow out of it? Thankfully my pedi has no problem admitting when she can't handle things or when my kid is beyond her normal daily stuff. She knows that I'll be in her office before I go to a specialist and that my child has to be comfortable. She receives a report from every specialist visit and contacts me if she has concerns. I can contact her with any concerns. This was very important to me when searching for a pedi. I have learned not to settle for "ok" when it comes to my kid. Interview pedi's in your area to find the right fit for you and your child. We got lucky our pedi is in a pedi only practice and they all hand out referrals as needed. Good luck and hopefully you can find the right dx for your child and make life comfortable.
Lurker here... I'm sorry your little guy is having this problem. It's tough. Just to throw out another possibility...my nephew had "just" eczema they couldn't get cleared up. It turns out he also had a staph infection. It took a couple of rounds of antibiotics, but the remaining eczema is mild and does respond to lotions, etc. now. Good luck!
Post by definitelyO on Mar 26, 2015 22:49:00 GMT -5
I'm so sorry!!! DS had severe exam a since birth. Itched til he bled. His was allergy related but I would push your pediatrician for the referral like everyone else said. We used vanicream and aquaphor to help. Just in case those would help you. I hope you figure it out.
Ugh. We have the same problem. Sometimes Glaxobase or "Eucerin Complete Repair" work, sometimes they don't. I need to make this since we've had flares ups recently:
Feb 26, 2015 12:04:44 GMT -6 ginger said: It's a little complicated if you use the calendula infused jojoba. You CAN leave it out though.
To make the Calendula Jojoba Oil I used a pint jar and filled it half way with dried calendula flowers. Then I covered it completely with jojoba oil. You have to let this sit for a month and shake it as often as you remember. Then strain it.
This is the recipe I used:
INGREDIENTS: 5 ounces Shea Butter 2 Ounces Avocado Oil 1 Ounce Calendula infused Jojoba Oil (Or use 3 ounces Avocado Oil if not using the Calendula oil). 40 Drops Eczema Helper (It's a Plant Therapy Synergy, but it's optional. I feel like it helped too, so personally, I recommend it as it's child safe for 2+).
DIRECTIONS: Heat Shea Butter over Medium-low heat, using a double-boiler, just until melted. Add in remaining ingredients and stir to combine. Let cool (I put mine in the freezer, but left it a bit too long...it still whipped up well though) then whip until soft peaks form.
TIP ON CLEANING: To clean everything, wipe out as much as possible, and then wash with baking soda, dish soap, and warm water. The baking soda will break down the oil.
I'm honestly still surprised it got so much better so fast. Her booty was REALLY bad.
Try calling your insurance company. Maybe someone there will hear your concerns and waive the referral requirement for a specialist visit. You'd have to deal with your doc knowing you went behind his back, but if that's what it takes to get him the care he needs/deserves, so be it.
I wanna hug you both. Have you tried the angle of pleading for your own sanity and peace of mind can you just please have a referral. Pretty please with sugar on top give me a referral?
I'm sure you tried every angle.
I guess I'm just gonna have to say "give me a referral or I will find another doctor who will". I have begged them before but they've always led me to believe that this different thing will work, so try it b/c a derm is a waste of time b/c it's 'just eczema'. I feel like a terrible parent enough as it is, this makes me feel just fucking awful.
I'm so sorry you are dealing with this!
I would file a complaint with your insurance before threatening to leave. They may not care if you leave but I'm pretty sure they would care if you complained to your insurance. Also while complaining your insurance may be able to submit something for you... Maybe not but it's worth a shot.
I hope you can figure it out and get the celiac test soon!
Post by Booze Raccoon on Mar 27, 2015 6:27:56 GMT -5
I feel you. I really do. My D was in this exact position for 3 years. Here is what works for us ... she is 90% better than she has ever been.
Bleach baths. They are miracle workers. A half cup bleach, 2x per week. It kills the bacteria which keeps eczema live and spreading.
Sunlight, chlorine, salt water. As much as possible.
Keep him moisturized. Especially when he is still damp from the bath or swimming. Everyone has a product they love. Make sure it contains no alcohol as it's drying. Aquafor, Vanicream, CereVe. Even Triple Paste is good.
Steroid creams can work when applied 2x per day every day and combined with the bleach/chlorine/sunlight. You can stop applying the steroid cream when the flareups are gone.
My D takes an oral anti-itch which helps her sleep and stay sleeping through the night. We can't live without it.
Keep fighting for him. It took me 2 years but I finally got her into the top pedi dermatologist in our area and it's made all of the difference.
Also, know that eczema is not necessarily related to allergies. For us it's not.
This is my hot topic since it's taken up so much of our lives. Please feel free to reach out if you need to chat or have questions. I'm very passionate about it.
Since I'm pregnant I've been avoiding topical steroids and I can't use my super duper amazing eczema cream. To survive the winter here I've been using the Lipikar Baume AP from La Roche Posay with Lipikar oil-based soap. It's been life changing for me. They also have a program you can sign up for online called 100 families that helps with supply for children.
Good luck - I really hope your DS can get some relief and that something someone here suggested will help. Good luck with finding the right solution. This stuff is hard to deal with.
I feel you. I really do. My D was in this exact position for 3 years. Here is what works for us ... she is 90% better than she has ever been.
Bleach baths. They are miracle workers. A half cup bleach, 2x per week. It kills the bacteria which keeps eczema live and spreading.
Sunlight, chlorine, salt water. As much as possible.
Keep him moisturized. Especially when he is still damp from the bath or swimming. Everyone has a product they love. Make sure it contains no alcohol as it's drying. Aquafor, Vanicream, CereVe. Even Triple Paste is good.
Steroid creams can work when applied 2x per day every day and combined with the bleach/chlorine/sunlight. You can stop applying the steroid cream when the flareups are gone.
My D takes an oral anti-itch which helps her sleep and stay sleeping through the night. We can't live without it.
Keep fighting for him. It took me 2 years but I finally got her into the top pedi dermatologist in our area and it's made all of the difference.
Also, know that eczema is not necessarily related to allergies. For us it's not.
This is my hot topic since it's taken up so much of our lives. Please feel free to reach out if you need to chat or have questions. I'm very passionate about it.
Hang in there @smace.
And this is what makes me think it's not eczema. The sun makes it SO MUCH WORSE, and that's usually the key for all eczema suffers, sun usually makes everyone better or less severe. We swam the other day and his skin just exploded. I made sure to soak him in the tub and douse him with lotion and it was just so so so bad.
Well I do know that the heat and humidity can cause flare ups but cooling down in the water should shouldn't. I think you're right though. It doesn't sound like eczema. I'd still persist with your doctor or find a new one if possible.
Post by truckentruck on Mar 27, 2015 6:47:06 GMT -5
I think seeing a dermatologist is wise, but I would request a referral for a comprehensive celiac blood panel from your normal pedi first to see if there is an autoimmune component to the eczema.
nothing works. NOTHING. no creams, no oils, no prescriptions. We had him allergy tested (blood only) and nothing showed up. My sister mentioned that it could be gluten causing it and now I'm all stressed at figuring out how the fuck to eat gluten free. His skin looks SO bad I want to cry, wake him up in the middle of the night in discomfort. His pedi refuses to send us to a dermatologist and I don't know if switching pedis would help bc I've talked to other moms who report the same thing from various pedis.
I just wanted to whine.
Update : appointment on monday, where i will not leave without a referral for a derm and blood work. His arms look even worse today. sigh.do i ask for a celiac panel? I want the right wording
I'm glad you got an appointment! Yes, I would say that you are concerned that this may have an underlying cause and you would like him tested for Celiacs Disease. Eta- the blood test called tTG-igA. celiac.org/celiac-disease/diagnosing-celiac-disease/screening/
Biopsy is still the gold standard and they may do that to confirm if the blood test comes back positive. The blood test is fairly new and you may get a bit of a push from the doc if he's not familiar with thre new guidelines.
I'm glad you got an appointment! I came in to tell you my son is eczema free for the first time since...I don't even know, I can't remember a time where he was completely cleared up but I see you don't think it's eczema anymore.
We use cereve hydrating cleanser and aveeno baby shampoo (not the body wash they have an oatmeal shampoo only). I might switch to mustela for everything now that I've seen the light.
This morning, no eczema. I can't believe it. We've tried vanicream, aveeno, we've been using cereve cream which made it look the best it ever has but we still couldn't get rid of it. I went to my hometown last week and my best friend gave me DSs belated christmas gift, she's been using it on her DS and picked some up for us. I'm glad she did, it's kind of pricey so I hadn't looked at it much.
Annnnnyway. I hope you get a referral and some answers when the testing is done. I know how frustrating it is to have something wrong with your kid and doctors that won't listen. It's infuriating. ((hugs))
My little guy has eczema too. My pedi insists he will outgrow it, but it finally got to the point where I just took him to the derm myself (I know may not be an option if you need a referral). I had even taken him to urgent care at one point on a weekend because it looked like maybe it could be chicken pox. That UC doctor offered to refer me to a derm but I had already seen the derm by that point, so maybe if your pedi refuses to give you a referral and you need one, maybe you can try this route? Our dermatologist gave us a prescription steroidal cream to use two times per day for one week, then once per day for one week and then nothing for one week and to keep repeating. It has seemed to help a bit.
I hear you. It sucks so bad. My poor kid is now suffering with raw skin all around his mouth and keeps saying "mama, hoorts" I won't put the steroidal cream there because he keeps licking the area but I do use aquaphor (when I feel like he's zoned out enough he won't notice and then won't lick).
I feel you. I really do. My D was in this exact position for 3 years. Here is what works for us ... she is 90% better than she has ever been.
Bleach baths. They are miracle workers. A half cup bleach, 2x per week. It kills the bacteria which keeps eczema live and spreading.
Sunlight, chlorine, salt water. As much as possible.
Keep him moisturized. Especially when he is still damp from the bath or swimming. Everyone has a product they love. Make sure it contains no alcohol as it's drying. Aquafor, Vanicream, CereVe. Even Triple Paste is good.
Steroid creams can work when applied 2x per day every day and combined with the bleach/chlorine/sunlight. You can stop applying the steroid cream when the flareups are gone.
My D takes an oral anti-itch which helps her sleep and stay sleeping through the night. We can't live without it.
Keep fighting for him. It took me 2 years but I finally got her into the top pedi dermatologist in our area and it's made all of the difference.
Also, know that eczema is not necessarily related to allergies. For us it's not.
This is my hot topic since it's taken up so much of our lives. Please feel free to reach out if you need to chat or have questions. I'm very passionate about it.
Hang in there @smace.
Really? This is so interesting to me because, to me anyway, these seem counter-intuitive. Like when my son is having an especially bad outbreak I skip his swimming lesson because I don't want to the chlorine to irritate him further.
And you add 1/2 cup of bleach to the full tub of water?
My pedi also had us cut down on baths to every 3-4 days.
I feel you. I really do. My D was in this exact position for 3 years. Here is what works for us ... she is 90% better than she has ever been.
Bleach baths. They are miracle workers. A half cup bleach, 2x per week. It kills the bacteria which keeps eczema live and spreading.
Sunlight, chlorine, salt water. As much as possible.
Keep him moisturized. Especially when he is still damp from the bath or swimming. Everyone has a product they love. Make sure it contains no alcohol as it's drying. Aquafor, Vanicream, CereVe. Even Triple Paste is good.
Steroid creams can work when applied 2x per day every day and combined with the bleach/chlorine/sunlight. You can stop applying the steroid cream when the flareups are gone.
My D takes an oral anti-itch which helps her sleep and stay sleeping through the night. We can't live without it.
Keep fighting for him. It took me 2 years but I finally got her into the top pedi dermatologist in our area and it's made all of the difference.
Also, know that eczema is not necessarily related to allergies. For us it's not.
This is my hot topic since it's taken up so much of our lives. Please feel free to reach out if you need to chat or have questions. I'm very passionate about it.
Hang in there @smace.
And this is what makes me think it's not eczema. The sun makes it SO MUCH WORSE, and that's usually the key for all eczema suffers, sun usually makes everyone better or less severe. We swam the other day and his skin just exploded. I made sure to soak him in the tub and douse him with lotion and it was just so so so bad.
The sun makes it worse? What if he eats shrimp or something else with a lot of iodine?
I am not saying it IS dermatitis herpetiformis, but it definitely has some overlap.
Since I'm pregnant I've been avoiding topical steroids and I can't use my super duper amazing eczema cream. To survive the winter here I've been using the Lipikar Baume AP from La Roche Posay with Lipikar oil-based soap. It's been life changing for me. They also have a program you can sign up for online called 100 families that helps with supply for children.
Good luck - I really hope your DS can get some relief and that something someone here suggested will help. Good luck with finding the right solution. This stuff is hard to deal with.
I'm part of the 100 families program and love the line of skin products. It's worked far better than anything DS has ever been prescribed. I've given away a few boxes of cream to other parents that have kids with eczema, and they've had a lot of success too. I love their products.
I feel you. I really do. My D was in this exact position for 3 years. Here is what works for us ... she is 90% better than she has ever been.
Bleach baths. They are miracle workers. A half cup bleach, 2x per week. It kills the bacteria which keeps eczema live and spreading.
Sunlight, chlorine, salt water. As much as possible.
Keep him moisturized. Especially when he is still damp from the bath or swimming. Everyone has a product they love. Make sure it contains no alcohol as it's drying. Aquafor, Vanicream, CereVe. Even Triple Paste is good.
Steroid creams can work when applied 2x per day every day and combined with the bleach/chlorine/sunlight. You can stop applying the steroid cream when the flareups are gone.
My D takes an oral anti-itch which helps her sleep and stay sleeping through the night. We can't live without it.
Keep fighting for him. It took me 2 years but I finally got her into the top pedi dermatologist in our area and it's made all of the difference.
Also, know that eczema is not necessarily related to allergies. For us it's not.
This is my hot topic since it's taken up so much of our lives. Please feel free to reach out if you need to chat or have questions. I'm very passionate about it.
Hang in there @smace.
Really? This is so interesting to me because, to me anyway, these seem counter-intuitive. Like when my son is having an especially bad outbreak I skip his swimming lesson because I don't want to the chlorine to irritate him further.
And you add 1/2 cup of bleach to the full tub of water?
My pedi also had us cut down on baths to every 3-4 days.
DD has eczema. When we went to see an allergist, he also suggested a bleach bath. He suggested a capful (cap on the chlorine bottle) to a baby bath tub. He also suggested that we bathe every night to get rid of any surface irritants. Unfortunately I can't give any opionion to the chorine bath since we only tried it once. However, we do bathe DD every night. I don't see it making her skin worse nor making it better.
I realize that we aren't doctors, but there are so many of us who are suffering from skin ailments (or have children who are suffering) that perhaps somebody will have the same issue and can suggest a course of action.
I just got done with a T.R.U.E. test (three panel patches on my back) for 35 common topical allergens. Sadly, nothing flared, which means I'm not allergic to any of these 35 things (which, if I were, I could avoid cleansers, soaps, detergents, lotions, shampoos, conditioners, etc. with these ingredients). I could very well be allergic to other topical things, but my doctor suspects food now. My next step is to take the food allergen test.
I'm really surprised that your pediatrician seems so nonchalant about this, given the severity of Wes's condition. I hope you are able to get real help soon. Eczema, psoriasis, and other skin conditions are so uncomfortable and unbearable, and I'm angry that you guys are just being brushed aside.
All this being said, here are my suggestions:
(1) I'm sure you've tried countless lotions and creams (Aquaphor, Eucerin, CeRave, Cetaphil, Neosporin, Aveeno, etc.). You know what? I have, too, and nothing really fucking works. It is so frustrating. The one thing that has given me a little bit of relief is Vanicream. It doesn't solve my issues. I still flake. But it does calm my patches a bit and makes me a little less itchy. I also use Vanicream and Vanicream Lite on my own baby when she gets occasional patches. I use Mustela to shampoo her hair.
(2) You've probably also tried all sorts of body washes or shampoos for sensitive skin, too. I've started using Free & Clear Shampoo and Conditioner by the same company that makes Vanicream. Most of their products are safe for babies and children. Here is a list.
(3) I bet you've also switched to free and clear laundry detergent. If not, do that.
If you don't see any sort of improvement trying to eliminate common topical allergens, then Wes probably has food allergies like I do, and he needs to get tested for that.
I feel you. I really do. My D was in this exact position for 3 years. Here is what works for us ... she is 90% better than she has ever been.
Bleach baths. They are miracle workers. A half cup bleach, 2x per week. It kills the bacteria which keeps eczema live and spreading.
Sunlight, chlorine, salt water. As much as possible.
Keep him moisturized. Especially when he is still damp from the bath or swimming. Everyone has a product they love. Make sure it contains no alcohol as it's drying. Aquafor, Vanicream, CereVe. Even Triple Paste is good.
Steroid creams can work when applied 2x per day every day and combined with the bleach/chlorine/sunlight. You can stop applying the steroid cream when the flareups are gone.
My D takes an oral anti-itch which helps her sleep and stay sleeping through the night. We can't live without it.
Keep fighting for him. It took me 2 years but I finally got her into the top pedi dermatologist in our area and it's made all of the difference.
Also, know that eczema is not necessarily related to allergies. For us it's not.
This is my hot topic since it's taken up so much of our lives. Please feel free to reach out if you need to chat or have questions. I'm very passionate about it.
Hang in there @smace.
Really? This is so interesting to me because, to me anyway, these seem counter-intuitive. Like when my son is having an especially bad outbreak I skip his swimming lesson because I don't want to the chlorine to irritate him further.
And you add 1/2 cup of bleach to the full tub of water?
My pedi also had us cut down on baths to every 3-4 days.
Countless doctors told us to keep her out of heat, sun, salt water, chlorine. We did and her skin was terrible. Then we saw a specialist who told us to do all of the above and I swear on my life that it helps.
Post by truckentruck on Mar 27, 2015 19:16:41 GMT -5
Glad you are getting seen! The comprehensive celiac panel tests for a few igg and iga antibodies that would most likely be elevated with celiac disease. It gives a pretty good indicator of short term and long term issues with gluten in a celiac. If the rash is DH and not eczema, I believe it could technically be biopsied in lieu of bloodwork, but the comprehensive panel is the best way to go, and it does include the ttg iga antibody someone else mentioned before. (We just went down the celiac diagnosis route with my daughter 6 months ago.)
Really? This is so interesting to me because, to me anyway, these seem counter-intuitive. Like when my son is having an especially bad outbreak I skip his swimming lesson because I don't want to the chlorine to irritate him further.
And you add 1/2 cup of bleach to the full tub of water?
My pedi also had us cut down on baths to every 3-4 days.
Countless doctors told us to keep her out of heat, sun, salt water, chlorine. We did and her skin was terrible. Then we saw a specialist who told us to do all of the above and I swear on my life that it helps.
Oh I'm not doubting you. What kind of specialist? I'm curious because I would like to look into it.
Just a lurker, but my pedi sent my son for both a celiac panel and a food allergy panel. His food allergy panel tested for allergies to dairy, soy, peanuts, shellfish, wheat, corn, nuts, seeds, fish and i might be forgetting some others. He was 10 months at the time and his pedi and allergist said that his allergies will likely change over the next few years but we're still trying to stay away from the foods that where his results were high. I can show you his results if you think it would be helpful to take to your pedi as an example - just pm me.
That said, i got the "it's not that bad" line from his pedi, dermo AND allergist. This kid hadn't slept well ever because of the constant scratching and he just turned 1. So i get your pain.
Truthfully, we've had a hard time staying away from his allergen. And i got tired of putting the steroid creams and not getting good results. So everyone's suffering continues but it's not as bad as when i was nursing and eating everything.
You could ask for a Celiac panel, but those can give false negatives. A biopsy (while he's STILL eating gluten—don't cut the gluten from his diet!) is the only sure way to detect Celiac disease.
And if that turns out to be the cause, I know it seems daunting but being gluten free these days really isn't as bad as it used to be, I promise!
I agree a biopsy is the best way, but most docs do the blood work first before going through the hassle/expense of an endoscopy. If he's still eating gluten, the blood work specific to celiacs should give at least a slightly elevated result.