BabyWhispererForums.com
EAT => Food Allergies => Topic started by: KittysMum on December 03, 2008, 15:42:53 pm
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Hi all
It's a shame that I only come back when things go pear-shaped, but I'm glad you're here nonetheless!
We've been using Dermasalve for Kitty's eczema, with great success. But I've found out today that the company who make it are folding. I'm devastated, as I've had problems with conventional emollients in the past.
Can anyone let me know which creams/ointments work for their lo's? I've tried Diprobase cream and ointment, but suspected something in it made things worse.
I've heard DoubleBase mentioned a bit on here. Any others that I can mention to the doctor tomorrow?
Thanks so much in advance for your help and advice.
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Double base from what I can remember with using it for psoriasis is more moisturiser rather than taking the problem away. Diprobase has worked a treat for ds eczema but if you have seen a reaction to it I guess not the stuff for you!
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Have you tried aveeno? We have been using the bath/shower oil in his bath and find it really good. I like the aveeno cream for myself but we use oilatum cream on him.
Laura
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We use oilatum in bath, and Unguentum cream, makes it less unsightly and dry on Abbi. Both free on prescription for her too :)
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Sam has a terrible scabby leg from eczema. Doublebase works well on him.
I have also seen good write-ups about pure potions. www.purepotions.co.uk Not used them though.
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Ohh no I was going to see if I could get some DermaSalve, only because I"ve heard great things about it!
We use Diprobase and Epaderm. The Epaderm can only be described as goosefat, it's thick and greasy, but we put it on at night and cover up (legs) and it works well.
I've also used Aveeno cream (the one in the green tube) and it was really good as well. Also available on prescription but only a few quid at Boots.
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We used Spectro Gel Eczema wash and cream for babies and it was great.
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Unguentum cream here also as well as good old aqueous.
I find that the aqueous is great for when the skin is not too bad, it's my keep things ticking over cream, but when the skins is a bit worse I use the unguetum. I would say it is a bit thicker and waxier so is cream as a mild barrier for the bad weather.
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One I just thought of here in the UK is "Green People" - a co-worker of mine had the most horrible excema I've ever seen, she's suffered from it from birth and used to miss several day of work each month from due to flare-ups that were unbearable for her. I read an article on this lotion by "Green People" - it was developed by a Danish mother who had spent years trying to treat her child's excema unsuccessfully. My co-worker tried it and told me that it was the first and only thing that had EVER worked for her in her entire life -- so must be good!
www.greenpeople.co.uk is their website but I don't know where it is available.
Good luck!
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I can't believe the company is folding thats not good news at all. Will have to start looking into other products, really not loking forward to this.
Kelly
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We use Lush Dream cream and Dream wash, it was kindly recommended to me by another BW and H's eczema rarely if ever flares now.
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I tried the Lush dream cream and it caused my ds to flare badly. I have heard of people that have used it successfully though.
Kelly
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Yes I will chime in with the same thing about the Dream Cream. A dear friend of mine can ONLY use Dream Cream and Dream Wash or her excema is nasty nasty nasty. The Dream Cream clears it up nicely. But, my sister has used it on her son and it makes him flare up worse.
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Thanks for all your responses girls - I really appreciate those.
The doctor has prescribed Oilatum to try - both the bath oil and the cream. I'll see how we get on. He did say that there are loads of others we can try if this one doesn't work out for us.
Kelly - I did think of you when I heard about DermaSalve folding, as I know you've had a nightmare in finding a cream that worked for you. I so hope you manage to find one that's okay. It does feel like a huge step backwards, doesn't it?
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It really does. I still have some dermasalve at the moment bt will need to find something else soon.
Kelly
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We use SpectroJel Eczema Care for Babies as well -- the moisturizing cream is great.
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Epaderm seemed to be the best for Jenn.
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I had terrible eczema on my ankles for years that would not go away. Steroid creams improved it a little, but as soon as I stopped the eczema would come back. I've tried loads of different commercial moisturisers/creams - nothing. The only thing that has worked for me is shea butter - the pure stuff, with no additives/fragrances or essential oils added. I got it at a health food shop - sold as a lip salve, but worked well on my ankles. 2 months later the eczema was completely gone!
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Thanks so much. I have an idea that the Oilatum cream is fine on her body, but is making her face red. Her skin does seem to be incredibly sensitive, which was why I was so delighted to discover Dermasalve, on Kelly's recommendation - it really was so soothing and gentle, and would calm her sore skin in hours.
I wish I knew what ingredient it is that she's reacting to. I'm in two minds, as to whether to involve the doctor in the search for a new product or not. If I do, he's likely to prescribe another 'chemical-ly' one, and I would imagine it will take longer to find one that suits her. But if I do my own research and find a more natural product that works, it'll cost me. (Having written that, I realise that finding a solution is far more important than the money, isn't it? But getting the DermaSalve on prescription was a god-send as we got through tubs of that and it was pricey...)
I've ordered a pot from Pure Potions to try, as I like the sound of their ingredients list and the testimonials sound promising.
Can anyone tell me where they get Spectra from? Can't see a UK stockist from a quick 'Google'...
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IF you are in the UK you can get unrefined shea butter from here:
http://laughingbird-bodycare.co.uk/categories.php?id=1
Seems pretty cheap! Though it seems some people can be allergic to it so a patch test might be necessary if you decided to try it.
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Thanks Lan! I'll def. try some of that. Cheers mate.
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We tried shea butter and worked well for the first week or so then James seemed to start reacting to it. It is made from a tree nut but not one that is a common allergen. They use the fruity part of the shea nut and it is only the oil that is used from it. This contains little protein which is possibly why there are not many know cases of an allergic reaction to it. I do know that it definately made James's skin worse after the initial week and do not feel confident in retrying it. James does test positive to quite a few different nuts though which probably makes me more anxious about trying this again. If yoou decide to try it on Kitty just take it slowly and you should be able to notice any reactions quickly if they occur. I do know that many people use it with great sucess.
Please let me know how you go on with the pot from pure potions as I nearly ordered it once before as it sounded promising. I hope it works well for Kitty.
Kelly
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Perhaps we could stay in touch Kelly, as I suspect Kitty's skin may be similar to James'.
The Pure Potions pot arrived yesterday; I tried it once, but her skin looked so red, that I've not tried it again yet. I did have a little bit of DermaSalve left, so I put that on her face this morning, and the redness went down considerably within about 20 minutes. So annoying that we can't get hold of that anymore. It really felt like I'd found a solution to the problem.
I've also ordered a tube of Green People Baby Salve, to give that a try.
Will keep you posted if I find anything that seems to be good, and perhaps you could do the same for me? I'd really appreciate that.
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Am I right in thinking that you girls using Spectro Gel are in the States?
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Kitty - would love to know how you get on with the Green People, if you don't mind posting or PMing me and letting me know. Like I said, the girl I worked with had the worst eczema I'd ever seen in my life and she used to miss days and days of work each month from it until she started with the Green People. She said that it changed her life! I know that everyone's eczema is different and all different products work differently for different people, but I am curious how it goes for you.
Have you thought of just stocking up on lots and lots of DermaSalve to have until you find something else?
Either way, I do hope you find something that works.
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Unfortunately, they've stopped stocking it everywhere now. Been trying for a while!
Will certainly keep you posted on progress - I'd be delighted if I can find a more natural cream.
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Mashimaro, I've got to say I'm really excited about this Green People cream! I put it on her at lunchtime, and waited with bated breath for the usual cries, redness and itching. There was none!
Her skin is calmed and soothed. Okay, she looks like she's been in an oil slick (I got the balm - have since been back and ordered the lotion too) but I don't care. I'm really hopeful this might be an answer. Can't thank you enough.
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Ohhhh YAY! I really, really do hope that it works!!
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I think it would be a good idea to stay in contact. It sounds like you are having look with the green people cream. I hope it continues to work well for Kitty. I am going to have a look at it on the net. Please give updates.
Kelly
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Certainly will do. This morning, she's looking better - not clear obviously, but the skin's not burning or flaky. I really think it might be a good soother, even if we still need to use steroid creams to actually clear the flare ups.
I'm a bit wary, as I know you said you had success with a cream for a week, then it caused problems. I guess time will tell.
But I'm very hopeful. I've since been back and ordered their baby wash and nappy cream too. (And they smell just delicious!)
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I hope the cream works well. I found myself that anything with essential oils in it just was way too strong for my skin - I pretty much have to use fragrance free everything. The only thing that wasn't too bad was calendula - I think it has a natural steroid in it?
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Fingers crossed it keeps working for Kitty.
Kelly
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Thanks Kelly. I'd recommend you try some of the Green People aftersun lotion on James - it's lovely and calming (it's not unlike DermaSalve to use).
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Thank you for that recomendation. I will have a look at the ingredients shortly before I order some.
Kelly
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I have beenlookin at the green people products and there seems to be lots of ingredients in them which makes me a little nervous. I have noticed that some of the products contain olive oil which means they are out for James. I am going to see what I can find on the net. I have found a eczema cream by earthbound organics that only contain 3 ingredients so I think I may order some and try.
Kelly
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I'll have a look at those too, Kelly.
I've been using the Green People lotion and balm, but it's too early days yet to say for sure how we're doing. I've also tried Shea butter, but again, too early to say.
It's a minefield.
I think Kitty may have a wheat allergy; all this has flared up since we introduced wheat a few weeks ago, so we're both doing the elimination thing again. The poor thing is back on antibiotics now, as it's become infected again... *sigh*.
We braved John Lewis this afternoon, but I wished we hadn't; the looks Kitty got, it was horrible. Okay, her face was red and sore and scratched, and her hair was plastered down with the emollient on her scalp, so she wasn't looking her prettiest, but it still makes you feel rubbish to have her looked at with horror.
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BTW Kelly, my husband's seriously considering buying the DermaSalve ingredients and having a go at making up a batch himself.
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I've been following along. (Ds's seem to be OK, but I get it horribly on my hands.) I just had to post {{hugs}} to KittysMum for folks' reaction this afternoon. I'm so sorry hun. :-* She looks so precious in your avatars. :)
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Thanks lovely - you are sweet.
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I like the idea of trying to recreate dermasalve. If your dh goes ahead with it please let me know how it goes. I am so sorry that Kitty has flared. James has a wheat allergy and he is now reacting to it upon contact where it was not an issue before (not that he came into contact often). We have noticed this as they make playdoh at his nursery and his hands were flaring and we could not get it under control. I had a hunch that it could be the playdoh so they now make it with a gluten free flower for him and that has solved the problem.
Kelly
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Hello there.... I 'm not sure if i'm too late on posting here but I recently found this amazing cream that works wonders on my sons eczema and its 'natural' its called 'baby derma med' ... it says its for diaper rash and eczema..i personally just use it on his eczema . I live in British Columbia, Canada I just read the jar and it is made in Canada..not sure if they have a website to order from or not....i hope so as it is wonderful!!!! take care. Becky
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We've made progress... thought I'd update.
I've eliminated wheat for the past few weeks, and the eczema has all but vanished again. I couldn't be more relieved; my happy little girl is back.
What drives me absolutely MAD is all the doctors who are sceptical about food allergies and refuse to accept that there is any link at all. If they could see the before and after, I'm sure they'd be convinced.
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James's dermatologist still does not believe that his eczema is linked to food allergies even though he has seen the before and after pics. We are lucky that his paediatrician at the hospital does which helped us a lot. It is nice to know that somebody actually believes you in the medical field.
I am so glad to hear that Kitty is doing well again.
Kelly
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Kelly, I wanted to ask, can you tell me again what you've found James is allergic to? Only, when I first read that you'd indentified multiple food allergies with him, I thought "I'm glad all Kitty is allergic to is milk".
But having worked out that it's not just milk, it's wheat too (and now we're suspicious of legumes, after her eczema has flared after eating chickpeas and butterbeans) I'm wondering if she's not in the same boat as James.
Can you give me an idea of what you've found to be problem foods? I obviously won't assume that Kitty's the same, but it'd be helpful to have an idea of which foods to be on the look out for.
BTW, I'm getting along great with the Green People's Baby Salve and their Baby Lotion. Expensive in the quantities I'm using, but then so was DermaSalve. Have you tried them on James?
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James is allergic to dairy, eggs, wheat, oats, soy, peanuts, tree nuts, fish, stoned fruit, citrus fruit, banana, peas, corn, olive oil and we have not attempted shellfish. James tests ige positive to these foods apart from shellfish but we were advised not to try it at the moment. We have trialed all of these food incase they were false positives apart from peanuts and tree nuts. We did not trial egg orally as James had a contact reaction to it where he broke out in hives so decided an oral trial was not needed.
We have not tried the green people's products yet as I am still nervous about it due to the amount of ingredients plus we are restricted as some contain olive oil. I do need to find something though as James's hands are bad at the moment.
Kelly
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Thanks for that Kelly. I'm going to get a doctors appointment and ask for a referral to an allergist.
Can I ask how they tested James, at what age and who organised the tests? Kitty has had a RAST test for dairy, but it came back negative. I wonder if it may have been because I'd already eliminated dairy from my diet?
Kitty has flared again today. How quickly does James flare from foods that haven't agreed with him? Could it be that her morning flare has been caused by something I've fed her at teatime the day before? Only I'm keeping a food diary to try and identify problems, and I've drawn a blank on today's flare. But reading your list there, makes me wonder about olive oil, as I cooked her lunch in olive oil and also rubbed it all over her as an emollient.
Sorry to quiz you, but you obviously have a lot of experience on this where the medics aren't very helpful. Have you ever had a problem with any veg, like brocoli, kale, spinach? Or meats?
She flared badly last week, and I googled what she'd eaten and found that chick peas and butter beans (she'd had both) can cause problems in 50% of children with nut allergies. I've not tried Kitty with nuts obviously, but I guess an allergy is likely. So I'm avoiding legumes now.
Is James okay with rice milk? I'm concerned about Kitty's calcium intake, as she's only breastfeeding twice a day now and not for very long. We're seeing the dietician in a few weeks time, so I'll check this with her then too.
I read a good book on allergy over Christmas, btw: 'Dealing with Food Allergies in Babies and Children' by Janice Vickerstaff Joneja. Can you recommend any others?
Thanks Kelly. x
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James had his first RAST test done at 11 months which was when we found about 60% of his allergies. Were advised at this point to eliminate all foods he tested positive to which involved James going onto neocate to make sure he was still getting all his nutritional needs. We were also refered to a dietician at this point who advised going back to basics. Our plan was to basically go back to giving one food at a time again for 3-4 days and if that was ok to add another food and so on. If James reacted to a food we had to wait at least 3 days before adding another.
The tests were carried out at one of our local hospitals after James' first visit with a paediatric consultant there. He was convinced that due to the severity of James' eczema it was triggered by food allergies. We had got the appointment after we had taking James to A&E as he was not able to eat properly due to the severity of the itching and was not sleeping for more than 10 minutes at a time. Our friend who is a paediatric nurse at the hospital acompanied us which helped a great deal.
Before this James had seen 3 different dermatologists and they all said that his eczema was not linked to food allergies and we were told to just keep up with his daily treatment plan and things would improve in time.
James has since had another 2 lots of RAST tests which confirmed allergies which we already suspected.
There was quite a few times that we suspected brocolli, sweet potato, leeks and spinach ( there were others but can't quite remember) as James would seem incredibly itchy and seemed slightly more flared. The problem was though that his diet was so restricted that if it was not an obvious reaction we did not eliminate a food.
James reacts to beef and chicken (forgot to put chicken on the list) but is ok with lamb and turkey.
We have tried James with rice milk a few timebut it seems to make him increasingly itchy and then he slowly starts flaring so a definate no at the moment here but I know many children do really well with it.
I have to admit that I have not really read many good books on food allergies as I tend to look on the net instead.
I hope I have answered at least some of your questions as I feel I have got a little carried away.
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No, that's incredibly useful, Kelly, thank you. I'm just in tears at the end of most days recently, feeling so disappointed and helpless that Kitty's in such a bad way but that I'm on my own with it. I'm not feeling supported in any way by the medics. I'm going to each appointment with a hard shell in place, ready for the sneering and patronising responses we've got so far, almost exclusively.
I'm cross with my dietician too. Her daughter suffers from MSPI, so I was delighted, thought I'd found an ally there. But at our last appointment, she told me to 'get going, introduce all foods now', which, looking back, has been absolutely crazy advice. Luckily I haven't given Kitty eggs or fish yet, but I went ahead with a huge variety of foods and then had no clue at all when she turned red pretty much overnight. It seems from the books that you can trigger the intolerance when you introduce things that might be problems too early, when the baby's system is too immature.
We've got an appointment with the dermatologist on Friday, and I'm going to ask her for a referral to an allergist, as this is just getting stupid. We keep being given antihistamines and hydrocortisone creams ("for the flares") but what do I do when she's flaring all the time?
Her skin will seem to improve and I'll be so relived and think we've cracked it, then we're back to square one, without a clue what's set her off this time. Tonight she's red and literally crusty-skinned. She screams when I put creams on her and claws at her legs at each nappy change. I just wish I had a normal baby, as this is so hard.
Added to everything, I'm baffled as to which emollients to use, as it seems that prescription ones make her much worse. The olive oil seemed an answer for a time, but then when she didn't improve, I panicked, thinking that it could actually be the cause of the problems. Trouble is, you can Google pretty much anything with the word 'allergy' and several results appear.
We're waiting for the ingredients to arrive for making our own Dermasalve. That feels risky in itself, but I don't see we have much choice. I'm spending about a tenner every two days on the Green People stuff; we get through so much.
What do you use Kelly? Or are you still okay for DermaSalve at the moment? And do you find Neocate okay with James? When Kitty flared a few months back and we couldn't get to the bottom of the cause, the Neocate was all we could think of, so stopped it. I'm wary of reintroducing it now, as she's so bad, but I'm terrified that she's missing out on nutrients, her diet is so restricted.
She has ground rice and mashed pear and apple for breakfast, sometimes with cocoa; mashed sweet potato, potato, parsnip, lamb and carrots for lunch, followed by avocado chunks and more rice and fruit; then pretty much the same again for tea. She has two (very short and half-hearted) breast-feeds a day too. She drinks a tiny amount of apple juice diluted with water, just the odd mouthful here and there really. Can you spot any problems there, Kelly? I'm wondering about the sweet potato now that you've mentioned it. What does James' diet look like on a typical day?
I'm really glad you got carried away, as I feel up the creek without a paddle and I know you understand!
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I am so sorry that Kitty is so flared at the moment. When James was at his worse he ended up on 7.5mg of vallergan forte each night as this was the only way he got a reasonable night sleep. It still left myself and my husband without much sleep though as he would scratch in his sleep but would not wake screaming, so we basically spent most of the night stopping him from destroying his skin. It really annoys me that the medical profession really don't seem to understand.
I can remember doing nappy changes on a nice soft towel over James' changing mat on the floor and I would have to hold his arms down with my legs so he did not tear himself to pieces. It was still difficult though as he would rub his legs together like crazy and cry most of the nappy changes also.
Would you be able to express milk to put into Kitty' food for added nutrition? Would Kitty drink breast milk from a cup or bottle if she is not nursing for long to increase her daily intake? I have to admit that I found it easier having James on a restricted diet knowing that he was getting all his nutritional needs from the neocate. James is now on neocate advance which he seems to have done better on than he did the neocate infant to be honest.
It is so hard to look at the foods you give to Kitty and know if they could be a problem or not everybody is allergic to the same foods as you know. The one food you do mention that stands out as a possibility to me is avocado. I forgot to mention this on James' allergy list also. James only had it once and his lips went quite puffy and he was pulling at his mouth and his eczema flared around mouth and his cheeks. Having said that some children with allergies eat avocado without a problem.
As far as James' diet is concerned that is a whole new issue. James developed a severe food aversion around 2 years ago and is only now just starting to try foods properly again. James survived on neocate advance, raisins and apple puree for most of this period. It developed after he had chicken pox and would not eat so survived on neocate while ill. James the started to eat a little and came down with a virus so was on neocate advance and water only again. During both these periods his skin looked great. After James recovered from the virus he refused all foods apart from raisins and seemed quite scared of food. His consultant but this down to the fact that he had linked food with feeling miserable, itchy and in pain from all the allergic reactions he had had.
At the moment we use aalgo in James' bath which is a dried seaweed product. I have just started applying starflower oil to James' skin but not sure it is really helping. We are having to use hc on his hands as they are flared at the moment.
I really wish I could do more to help as I know how lonely you feel and how hard it is just to keep going.
Kelly
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Kelly, I so appreciated the time you took to reply - thank you. Thank you for all the information on your experiences with James (thought of doing a blog/website on your whole story? I'm sure it would help loads of people...)
We had a good appointment with the dermatologist yesterday, which was a huge relief. Finally, we're making some progress. She said some rather interesting things, which I thought I'd add here, just to update.
She thought avocado might well be the culprit (or one of). She's going to organise more RAST tests for Kitty as soon as she's well enough to have blood taken.
She was adamant that paraffin would not be a problem. The only problem with it, according to her, is that the thicker, greasier ones can make the skin heat up and turn red. So we've been given a big tub of paraffin gloop, which so far, hasn't caused any problems.
She's also prescribed Eumovate ointment, which I'm to apply liberally all over Kitty for the next two days. She said if I didn't do it, she would have Kitty admitted to the hospital and they'd give her steroids intravenously. I don't have a problem with steroids, so I'm not sure why she thought I'd be reluctant - anything to get her better again!
The best thing of all, in my opinion, is that she's quite happy to 'believe in' food intolerances/allergies, which is fantastic. So many medics seem skeptical, that you can feel like you're on your own.
So I'm relieved. Also because she wants to see us first thing on Monday morning - it's a relief to feel that someone other than me is looking after Kitty. I'm not a pro, I have no idea what I'm doing, after all!
Will keep the post updated on progress. Thanks for being there all, and especially you Kelly.
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I am so glad the appointment went well. If you have been advised to use eumovate on Kitty' face then please don't put it near her eyes as this can cause problems. James was on eumovate for a while but we were told not to apply it to his face as it was too strong for his age (James was around 12 months at the time). We were told not to put any topical steroids near the eye even the 0.5% hc.
I have thought about doing a blog/website but that would mean reading all my old notes and I am just not ready to do that yet. When James was at his worst it was a very difficult time. I can manage short bursts to help others on this site but to go through our whole journey with James from birth to present day would be too emotionally draining at the moment. I think that one day I will be ready and will then probably do a better job of it anyway.
Kelly
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You must have had a really tough time of it Kelly. I do sympathise, as I've only had a few short episodes to deal with, but found both times horrendous. I hope you do manage to do a site at some point though - let me know when you do, as I'd find it really useful and interesting to hear your story, what's worked for you etc. There's a lot out there about allergies, but not much that I've found as helpful as talking to you. Tbh, you seem more of an expert on the issue of food allergies than a lot of the GPs and 'experts' on the websites.
Every time we get Kitty's skin under control again, I think 'Good - this is it now - sorted' and every time (so far) something else has cropped up. So I'm trying hard not to think in that way, but to try and take each problem as it comes. I suspect that as Kitty's got problems with some foods, she's probably got problems with a number of them.
The dermatologist is hoping that she'll be well enough for her to take blood on Monday, so that they can do some RAST tests. But I'm not necessarily expecting stuff to show up, as it may be that she has intolerances rather than allergies, and I think I'm right in thinking that these don't show up in RAST tests?
But the good news for me, is that I've stopped breastfeeding just this last week, so I can eat (and drink!) everything again without worrying about the effect on my milk. Wonderful! The funny thing is, though, that I've spent so long regarding certain foods as dangerous that I'm finding myself a bit scared to eat things now, even though I know in my head that it's okay.
I'm not going back to cows milk though, as my skin has improved so much since cutting that out that I wonder if I don't have a problem with it myself. And strangely, I now prefer black coffee - coffee with milk just looks so sweet and heavy now, I don't fancy it at all.
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Have you read up about the effects of hard water on eczema at all? It's been in the news quite a bit recently?
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It was a rough time and still is but not so much his eczema but food aversion. I have to say though James is worth it and he only has to smile and it makes my heart melt and I realise how lucky I am to be his mummy. I am a very lucky person to have both of my children. My dd was and still is the best big sister James could ever have. Olivia has been so understanding especially as she was only 18 months when James was born. They love each other so much its lovely to see.
Now that you have stopped breast feeding have you put Kitty on neocate or a different formula? Or have you gone for rice milk as I think you mentioned that a little while ago. You are right in thinking that intollerances will not show up on a RAST test. I guess we were lucky in that most of the foods James reacts to do show up as IGE allergies andd therefore do show up on RAST tests.
Kelly
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I forgot to add that I am not an expert I just have lots of experince with James. If my experience helps you then I am glad. I just hope that Kitty continues to get the help she needs and that you at least have somebody that is willing to consider the food allergy side.
Kelly
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Thanks Kelly. Yes, she's on Neocate and has enjoyed it from day one, despite the HV warning me that it has a funny flavour.
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How is Kitty at the moment?
Kelly
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Hi Kelly
Thanks so much for asking - you are sweet.
We've had quite a flare recently that has been hard to get on top of, but today we've actually seen an improvement.
I went to see the paediatrician and the dietician today, and they both hinted that these flares may just be something that we need to get used to and live with. Both seemed unsure about the role of food allergies in Kitty's eczema, as there are several other factors in play - the cat, other environmental factors as well as the hereditary thing. The paediatrician said that the RAST tests may show false negatives too, so I'm not sure how helpful those results will be when we get them.
Did you reach a point with James where you just accepted his eczema? I'm struggling to, but wonder if I might need to just accept that she has it and hope that she'll grow out of it.
We've been using Eumovate for 6 weeks now, which concerns me quite a bit. What do you use routinely on James?
I was relieved to hear that the dietician thought the restricted diet I have Kitty on was fine nutritionally. It feels so scary to be in charge of her nutritional needs like that. She also said that we can move Kitty onto Neocate Active next time I need a supply.
The other thing I wanted to ask you (and why I logged on actually, so it was great to find you wanting to speak to me too!) is, are there other websites and discussion boards that you go to for support? I'm keen to find one that supports parents of kids with eczema; just the whole tip-sharing side of things really - how to stop scratching, how often to bath etc. Any suggestions?
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Just had to pop on & say that I'm proud of you both. You're being excellent mommies, advocating for the health of your children! It must be so draining. {{hugs}}
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I am so sorry that Kitty is flaring so badly at the moment.
We did get to a point where we accepted that James has eczema and that was how it was going to be and we would have to learn to control it. At this point though I knew that foods were a major trigger and if we could work out his food triggers then we would at least have a chance of getting James' eczema under control. When we got the results of the RAST tests we pulled all foods that James tested positive for and did not introduce others that we had not already tried James with. Then when James' eczema had calmed down and we had it under control we started food trials to make sure that he was truly allergic. The only foods we did not test were peanuts, nuts, egg(scores were extremely high and James had already had a contact reaction) and shellfish. We still have not trialed these foods yet.
We know there are lots of things that trigger James' eczema apart from food but with all food triggers out of his diet it is much easier to control. James actually spent around 10 weeks on eumovate and although it seemed to help at first it did not long term. James has also had stronger topical steroids which are betnovate RD and elecon. I hated using these but we only used them short term and they did help get his eczema under control. We now use nystaform hc ointment which is prescribed by our GP. It is not prescribed often as its considered to be an old fashioned treatment now. It is similar to 1% hc but also has an antibacterial property to it and I think it really helps.
As far as websites regarding eczema I use www.eczemavoice.com and www.talkeczema.co.uk
I don't use these as much as I used to and all my old posts were lost from talkeczema when there server went down. I do still go on them from time to time though.
I also like www.kidswithfoodallergies.org it has alot of information about food allergies but also has quite a lot of people who have lots of experience with eczema also. It does cost $25 a year for a full memebership although you can apply for a sponsored membership needed.
I hope I have answered your questions. Feel free to ask anything else and I hope Kitty is doing better soon.
Kelly
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Thanks so much Kelly (and thanks for the encouragement too, clh - sweet of you).
I'm feeling a bit unsure, as yesterday I was really relieved to be thinking, "this is it for us - we just need to live with it" It felt a huge relief to stop feeling so anxious; my happiness had become dependent on the state of her skin. The medics all seem so sure that it's just hereditary eczema and may or may not be allergy related, so we just need to accept it and live with it.
But today, I'm worrying that there might be an answer under our noses (a food we're missing, the cat, dust, whatever) and in not trying more, we're putting Kitty through more discomfort than she could have, if that makes sense.
On the one hand, it's dispiriting, keep searching for the culprit in her diet, cutting this out, eliminating that, looking for hidden ingredients (I've even checked her toothpaste tube, that's how crazed I've got over this) and then not seeing any improvement. But I feel like I'm doing something; trying to work the problem out. (The downside of that is, your hopes soar when you spot a possible problem food, then plummet again when eliminating it makes no difference...)
On the other hand, if it is just something that we need to accept, then that's easier in a way; I can relax more. Just get on with plastering her in her creams, try not to make a big deal of her scratching sessions and try to make her days as fun as possible in spite of her skin.
But having seen such a 100% improvement when we stopped dairy, it's hard to stop thinking that it might be food related and could all clear up again overnight if we just found out what the problem was.
What state is James' skin when the eczema is under control, Kelly? Only, Kitty has been 100% peachy in the past, but the last few months, at her very best she's still been pink, pimply and dry.
Someone told me something they'd read in one of the papers about soft/hard water being a solution too, did you hear about that?
Can I list her typical daily diet, Kelly, see if you can spot any possible problems?
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In some ways it is easier just to accept it and treat the eczema as best as possible. We did try this route when James was bad but it just became that bad that James was not having fun as he was so incredibly itchy. I felt I had to try my best to figure out what triggers James' eczema as he just did not have a good quality of life with the way it was. I know that James' eczema is hereditary but I also know that it is food allergies amongst other things that trigger it.
Have you tried wet wraps at all? I can't remember if you have or not. They did help James a lot at one stage. The health visitor can prescribe them as well as GP's and specialists.
When James' skin is at its best it is still very dry. James also has the odd few patches of eczema that don't ever seem to completely clear no matter what we do.
I have heard about hard water being harsh on the skin and I have read a few articles related to eczema being by hard water. We live in a soft water area so I have not really looked too far into it to be honest.
Of course you can list her daily diet. I will see if I can see anything that could be an obvious trigger. Of course what is a trigger for one person may not be for another but of course you will know that. It is so hard to work these things out and sometimes you don't ever get to the bottom of flares.
I just wanted to say what a great mummy you are being to Kitty. I know its hard when all you want is a child that is happy and content and not driven crazy by the intense itch. I found it hard to go out anywhere as James wouldjsut want to scratch constantly and it was just such hard work walking down the road pushing the pram whilst trying to prevent him from scratching. Car journeys meant that I would have to sit in the back of the car so I could try and entertain James whilst stopping him from scratching. This would often lead to tears as he didi not want to be stopped.
Kelly
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Thanks Kelly, and for the encouragement too - it's just what I need. It's hard work, isn't it? And you feel awful for thinking that you have problems, when loads of babies have real physical disabilities.
Okay - see if anything jumps out at you here. Here are our thoughts regarding possible triggers, as well as her daily diet (which is literally the same every day at the moment, as I don't think she's well enough to introduce anything new yet)
* The cat. BUT she doesn't have any other symptoms at all, and her skin has been clear in the past when he's still been here the whole time.
* The in-laws. My husband used to have such bad allergies when he lived at home that he had to have an op to remove the lining of his nose, it got so irritated. (His allergies cleared up as soon as he went to Uni). His mum does use a heck of a lot of products around the house. We see them every Saturday, and she usually flares most Sunday nights/Monday mornings.
* We've already worked out that she has a problem with latex, avocados & bananas - all the same rubber plant family apparently. In the family is also coconut (an ingredient of Neocate) and potato (her main carb staple...) I'm thinking of making her lamb mix with rice and trying that for a while. The dietician is very reluctant for us to stop the Neocate, as it covers her nutritional needs so well.
* Diet:
Breakfast: millet porridge made with water, a lump of PURE (dairy and soya free spread), syrup and Neocate stirred in at the end; Neocate to drink
Snack: mashed cooked pear; Neocate to drink
Lunch: mashed mix of lamb, potato, parsnip and carrot; pear or rice pudding for pudding (ground rice, water, Neocate, Pure & syrup); water to drink
Snack: Neocate
Dinner: as above
Neocate before bedtime
Thank you so much Kelly. I really appreciate your help with this.
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Hi, I just wanted to jump in and ask how you cook pear? My son loves pear, and I usually peel and mash it, but it's so hard. Does cooking it make it easier?
As for everything else, do your in-laws have pets? Have you looked to see what your in-laws use to clean the house? Perhaps suggest something safer for your girl. Poor thing, hope she feels better.
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Thanks Spectra, that's a good idea. But how to suggest it without causing offence... hmm.
Yes, Kitty loves pears too. I just peel and roughly chop them, then boil them in water for a few minutes to soften them. Then I mash them roughly with a potato masher. For finger food practise, I cook thick sticks of pear, then put them on a plate - bit slippery, but one or two sometimes reach their target!
Pear's been our fruit 'staple' from the start, after I read Tracy's recommendation that it was the least allergenic food to start weaning with.
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Yeah, that's one of the reasons I started with pear too! Now he eats apples and pommegranite lol.
I guess it depends on how the in-laws are. You know them best. If it was mine I know she'd be willing to show me and perhaps I'd offer to buy her the same cleaners that we'd use. I know she wouldn't be offended, but I don't know how your in-laws would react.
Maybe say, "I notice she flares up a day or two after she's been over here. Would you mind if I took a peek at your cleaners as there may be something in those cleaners?" Or maybe get your husband to broach the subject, since he may have more leeway with them.
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First of al with the coconut in the neocate. It is fractionated coconut oil which means it has been broken down extensively. From what I have read most people with coconut allergies are fine with this. Most babies/children do fine with neocate or equivalent formulas it has a very high success rate.
I know James used to react terribly when at my in laws house. At the time it was full of plug in air frsheners, mother in law had perfume on all the time, used fabric softeners on her clothes etc. There were lots of things that contributed. I slowly got her to realise what things were flaring him and we worked on alternatives foor many things.
Have to go as James has just woken due to itchies.
Kelly
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I am back.
I think on the whole Kitty' diet looks pretty good. I would possibly try changing the potato to rice for a few weeks and see if that helps. If that does not make any difference then I think I would take the pure out of Kitt' porridge. James was not able to have pure at one point though he can tolerate a little now. If that makes know difference after a few weeks then I would take parsnip out of the lamb mix and see if that helps. After each food is removed if it makes know difference then I would reintroduce it before you eliminate the next. I have heard of people being allergic to pears even though it is supposed to be one of the least allergenic foods so that is a possibility though would not be one of my first suspects. I am also wondering about the syrup. What kind is it?
Kelly
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Another thing I just thought of is the millet porridge produced on shared lines? Does the same factory produce products that contain nuts, dairy or egg etc?
Kelly
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Kyttismum,
I have been following this thread for a while. My DS has eczema too, specially on the face. I know it has genetic background, but I still would like to send you many hugs and encouragement for trying to find out what can really make it come up or disappear. Let me share with you my example, hope you dont mind. I had eczema for 10 years and it really meant a lot of discomfort. It was sometimes better sometimes worse. I saw some 15 dermatologists they all said to study to live with it( and gave me very strong creams). Well I didn't, one day when I got older, I just decided I am gonna try every single alternative therapy that is out there, and the first one worked!! It was an extremely strict diet, I lost loads of weight and my eczema disappeared, completely and did not come back for four years! Sometimes I still have it but never really bad as before and it is all my fault because I can not always resist food I should not eat. All those dermatologists! never suggested me trying a diet!
I personally believe that it is possible to find how to get rid of eczema (of course it is not food for everyone but many times it is). It can mean years or it can be just the next thing you try tomorrow. just dont give up! It makes such a huge difference in life, I really felt when it disappeared that I got a new life.
For my DS now (EBF) I started to do a strict diet, it does not work yet and I just keep looking around and trying this and that, new creams,getting rid of anything that might have wool in it, buying new cloths only with light colors etc. etc.
I also read about the hard/light water and we are buying a whatever called machine that makes water lighter
Never give up never surrender! :) You are great that you are trying everything you can! (If only my mother would have thought of the diet, would have saved years of suffering for me )
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I just wanted to say that I feel like I have picked holes in Kitty' diet and that really is not my intention. I am just trying to think of every possibility. I got to the point where I would suspect a food and then think I was crazy to even think of suspecting it and you know sometimes it would turn out to be a trigger.
Kelly
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No, thank you so so much Kelly. You were only saying the very things I've been wondering about - you can start to suspect every single thing, can't you? But, no, your posts were really helpful.
And thank you, bovi, for your story. That's really helpful too, as I was wondering whether to just accept the situation or keep pushing on with the diet thing. Tbh, the thought of not having hope, not being able to try something was so depressing that I'd already decided to keep looking at her diet. Thank you for your story and best of luck with your efforts with your lo. Let us know how you get on with the water thingie etc.
Well, we're thinking along the same lines Kelly. I made up a batch of potato-free food yesterday (with rice instead of potato) so will see how that affects things over the next couple of weeks. I was wondering about the carrot? (Trouble is, you google pretty much anything and an allergy comes up...)
The millet porridge says it's 'packed in an environment where nuts and sesame seeds may be present'. But don't they have to put that to cover their backs and actually there's very little chance of any being in the product itself?
The Pure's an interesting one. I think we'll do exactly what you recommend and start with the spuds, then move on if that doesn't help things. We're avoiding the in-laws house for a few weeks, so that should be that one out of the running. (Like yours, my MIL is a great one for 'products'; air fresheners, perfume etc. And we always put Kitty down on the carpet; I was wondering if she uses some sort of Shake 'n' Vac type product..?)
We went to the GP yesterday, as I'd run out of Eumovate, and he did raise his eyebrows at hearing we'd been using it for 6 weeks without a break. But he prescribed me some more nonetheless, so I'm hoping we can get the current flare under control again.
I'm just dreading summer. I can cope with her scratching when I can tuck her sleeves and trousers into socks (though it's not going to be long before she works out how to untuck those) but how I'll manage when it's hot (and more itchy) and she's in short sleeves is anyone's guess.
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Just had to post, as just one day free from potatoes, she's so improved, you wouldn't believe it. I'm so excited and hopeful; can hardly bear to believe that we might have found the problem food, after all this time...
Kelly - does James eat potatoes? I don't want to suggest that it might be a problem for him too, but might be worth a look at if he does eat them.
When you google latex intolerance, several websites list foodstuffs that are apparently related to the rubber tree, including avocados, bananas and potatoes (as well as most tropical fruits)
I'm quietly hopeful... her skin's gone from being a 3 or 4 (5 being the worst it's ever been) to a 1 or 2, literally overnight. Will post back soon with more (hopefully good!) news...
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I hope the goodness continues! That would be awesome if you found the culprit!
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James does eat potato actually. I have thought it could be a suspect on and off to be honest. It will be difficult to eliminate from James' diet though as it is one of the things he actually tends to like, and at the moment I need to be really sure before I take a food away due to his food aversion. James is 4 years old and eats only 3 different food consistently, potato being 1 of them. James is now just starting to try other foods but it is a very slow process and usually results in him gagging and being sick.
Thank you very much for suggesting it though and it does give me something to consider. I hope Kitty continues to do well, it is what you and Kitty deserve.
Kelly
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Cetraben works really well for our son Samuel. And we put Dermol 500 on his skin before he has a bath. We get both from the GP. His skin looks wonderful and rarely itches.