The remedy roundabout

I hadn’t realised I’d left it so long – nearly 2 months since my last post!

Ok, the lachesis didn’t help and neither has lycopodium. Now we are on to a remedy called Morgan.
I think Alice’s homeopath is feeling almost as exasperated as we do. “It would be fine if when it moved down her back, it left her neck”, she said. But no, the eczema just seems to to be spreading.
There have been a few little spells of minor improvement which have given slight hope only for them to turn in a flash into the most intense flare ups she has had yet.

Over the last couple of months we were doing fine. I was recognising a pattern of sorts; about 4 to 7 days of her skin being rashy but not uncontollably itchy, followed by a few days of a really itchy flareup. When I say “really itchy”, it actually is mainly isolated to when she is tired, waking up from a nap or at bedtime. Her skin’s condition was becoming more predictable and the eczema was isolated to the same areas. The worse flareups were becoming manageable because I was recognising they were shortlived.

Over the past month, I’ve noticed the eczema is spreading. The usual locations, the arm and leg flexes are now bigger. Her neck rash is going up into her scalp and down onto her shoulders. Some days is all over her back and has also appeared, mildly, on her tummy for the first time. The one godsend is that it has not gone back to her face and eyelids in the last few months.

Alice has been on a dairy free diet for about 10 days now. We had tried her on soya milk before but she hated it so we went back to cows milk. Someone suggested that we try goats milk and Alice has really taken to it – in fact she is really on board with going ‘moo’free and this little lady loves her mozarella cheese!
Again, the initial signs were good as her skin calmed down for a few days, but for the last 5 days or so it has just gone down hill again. I would have hoped by now that if dairy was a main trigger that her skin would be clearing. Maybe we need to give it another week or two…

I really feel we are on a cross roads with this journey. Alice now refuses to sit down in the bath because her skin stings so much. (We just put a small squirt of Aveeno body wash in the water). She is terrified of the shower too so bathtime is becoming quite an ordeal for us both. The front of her neck is cracked and raw.
We are about to go ot Ireland for a week’s holiday to visit family and friends and most excitingly, for my little brother’s wedding. I really wish I could give Alice a holiday from her itchy skin too.

So, now and not for the first time since we stopped using steroids in February, we are seriously considering using the hydrocortisone and maybe even the moderate steroid for a few days to try and get her skin back under control.
I think it is about trying to choose between the lesser of two evils at this moment in time.

We use Bria Organic Skin Balm and Pure Salvations Skin Salvation as well as Vaseline Intensive Rescue and to a lesser extent Aveen Lotion which seems to now irritate her. I certainly notice that we are getting through the jars of skin balm much more quickly. We continue to avoid paraffin base emolients during her homeopathy treatment. I tried Euricin cream but it irritated her too much, as did organic coconut butter which was a disappointment. I haven’t yet tried Shea butter.

Suggestions welcome on where to go from here!
Has anyone managed to control their child’s worsening eczema without steroids or with homeopathy?

Advertisements

14 thoughts on “The remedy roundabout

  1. Tracy

    Sorry to hear things are not improving and only spreading. It sounds more like TSW to me but that’s my opinion not medical advice :). I do know that homeopathy does wonders for illnesses. We use it often for things like colds and allergies. The ones she gave you sound right for what she is going through. I too tried homeopathy before and after starting TSW. It made no difference in either case. I think the steroids have suppressed the body so much that it does not respond appropriately to the homeopathy. It is my hope it will respond once my body goes into a recovery phase instead of the continuous spreading like it is now. It is kind of like sunlight….not appropriate (and possibly even harmful) in the beginning of TSW, but once it takes a turn, the the sun helps dramatically. Hence why I think Alice has TSW. I know it would be easier to give her the steroids for the trip. But it will set her back to square one if it truly is TSW. As a kid, my eczema never lasted for months and months. My mom says I would have it for about 6-8 weeks of the winter and a few days during the hottest days of summer. And I asked her if it spread – she said no – it would flare in typical areas and then stay there. Mind you, eczema can be different for all people so it is hard to say. But that is my 2 cents! 🙂 I hope whatever is going on, she heals quickly!!

    Reply
    1. goingnaturalmum Post author

      Thanks Tracy! i did go through a spell wondering if it was tsw symptoms or true eczema then realised it probably didn’t matter as long as we were off steroids and coping! but of course as you say it does matter now i am considering using steroids again. It seems strange after nearly 5 months off steroids it is now starting to spread again. We did have a tough month or two in the beginning where it was around her eyes and all over her face but it then got calmer and was restricted to typical eczema areas. if i knew it was tsw for sure i would stand firm, but it is very hard to stay strong when i consider that she might just grow out of eczema and actually get some relief from steroid use in the meantime. alice’s eczema didn’t get out of control before we stopped using steroids so maybe they have do have a place ? I do actually feel bad saying this, especially to someone who is going through tsw. well done Tracy in reaching 5 months x

      Reply
  2. Mandy

    As a TSW warrior (and yes, this is a battle indeed!), I can’t imagine what I would do if this were my daughter suffering, and not me. It was hard enough not to be able to pick up or hold my daughter in my early TSW months, but the thought of her going through this makes my heart go out to you and every other mom out there who has to watch their kid go through hell. That said, I agree with Tracy on not giving Alice steroids if you can help it. If it IS TSW, it will set her back and you have to do this all over again. If not, it might help in the short term but has it worked so far as a long term fix? This is an incredibly difficult situation and you have to to what is best for your child in the situation you are in. if you can go without steroids, I say stay strong. TSW can come in waves for months on end this first year of recovery. But it will eventually all go away, if it is steroid induced. It is so hard to know, though, and not having doctor support it tough. Take Louise’s advice and check out the ITSAN forum and facebook page and try to talk to other parents. They might be able to give you some good advice. Good luck!!! You WILL get through this.

    Reply
  3. Leyla

    I am weaning off the steroids. Although TSW people say that cold turkey is the best method – I think for kids, its very very hard as to them, they are just suffering – they don’t understand why, what for etc etc – they don’t have the willpower and self discipline needed to support the process. In her book “the eczema solution” the writer (who is cured of eczema using this technique btw) no longer uses steroids, emollients or other creams except to treat the occasional flare, and she recommends a tapering off of the steroids. I know what I am writing is likely to go down like a lead balloon with this readership – but I was using a very strong steroid cream on my daughter (without knowing about side effects etc). Since learning about them, I have been tapering off, and now we are using hydrocortisone every 3-4 weeks on small red patches which are reducing all of the time (to put this into perspective: this steroid usage is down from eumovate all over her body, and 1% on her legs every day for 6 months). She gets a kind of “mini withdrawal” each time the time between the steroid application is lengthened – but this is easily handled with a cool bath, loads of cream and some pain relief and it lasts around 24/48 hours each time. Overall, she is getting more comfortable and getting less reactions each time. We are slowly lengthening the time between steroid applications and sure enough, asides from the mini flares that she has – it seems to be working and I am confident this tapering off approach (whilst it may last a bit longer) is a more comfortable way of doing it. I have seen some of the pictures of withdrawal – whole body skin sheds, swollen faces and legs etc etc – and I am not happy to do that to my one and a half year old.

    Today, I only put steroid on the RED, inflamed parts of her skin – not the dry parts, not the hot parts, not the itchy parts – and thats it. (The way the docs told me to do it was to treat everything recognizable as eczema with the steroid cream).

    Reply
    1. goingnaturalmum Post author

      Leyla, Thank you so much for your response. Actually, you really made my day!

      We have resorted to using hydrocortisone again but are trying to do so in a very measured manner – so far for approx 1 week in July and again for another week until yesterday. We went steroid free for nearly 5 months and by then I was pretty sure that our daughter was still experiencing “true” eczema rather that TSW symptoms. She has it in the usual areas; wrists, elbow creases, behind the knees and neck, but I would she does suffer quite badly. Over the 5 months it was just getting gradually worse. She was awake more at night and terrified of the bath, so even though a bath might have helped it was almost too traumatic for her and I was managing only to coax her in (with me) once or twice a week. Horrendous though TSW withdrawal is, if I knew for sure that was what she was going through, at least I would know that it would end. I don’t know how long before she will grow out of her eczema and I just couldn’t let her continue suffering indefinitely.

      While we used the ointment last week, there was a night that she actually sang herself to sleep!!! I had forgotten she used to do that. One other night she did not wake the until 6am (her usual wake-up time).
      However, I did notice towards the end of the week it seemed like she was building up tolerance again to the ointment as she seemed to get itchier again. A reminder for me to keep a time limit on the these steroid application periods.

      It is really good for me to hear from someone that is finding some success tapering off steroids. I am so pleased that your daughter’s eczema is improving. Long may it last!

      Thanks again, Catherine

      Reply
      1. Rebecca Fenby

        Hi, I’m just wondering how things are going for you and your daughter? I have two little girls who have been on increasingly potent steroids for at least a year and we’ve gone cold turkey 10 days ago. As expected, their eczema has flared badly, but they are still coping and sleeping and at the moment don’t show signs of tsw, and I’m praying this continues. But I don’t know what to do for the better–if they, god willing, don’t go through tsw, then they will likely have severe eczema, which, while not as bad, is still awful to suffer with. I really don’t want to use steroids again as the fear of tsw is causing me more anxiety than I can bear, but I want them to be comfortable too! Argh! I’m buying up loads of ointments and vitamins, probiotics and fish oils like crazy, and we are restricting wheat from their diets to start, but it’s hard going, possibly worse for me than them, ironically. It’s been helpful to read about your experiences and I would so appreciate an update!

  4. goingnaturalmum Post author

    Hi Rebecca, thanks so much for reading and leaving a comment. Eczema is such a worrying and stressful condition for us parents to see our children suffer isn’t? And so hard to know what to do for the best.
    Well, as you have noticed I haven’t been posting on the blog of late! We are still using homeopathy (but with a different practitioner) and still with no positive results but also we could no longer cope without giving Alice some relief in the form of topical steroids, so the objective of the blog became kinda blurred. I’m back to treating her using the conventional methods so even the name of the blog seems inappropriate now .
    To be honest, I had come to the conclusion that Alice was going through ‘normal’, but unfortunately, worsening eczema. I had not ditched the steroids because of TSW worries anyway, I hadn’t even heard of it when we stopped using ts, I was just trying to find a better way to treat or even cure my daughter’s eczema.
    In the days after my response above to Leyla’s comment, Alice’s skin really went downhill. It turned out she had a staph infection. It cleared with antibiotics, but it proved to be a turning point for me. Alice had been really suffering and we needed to get her skin back under control. It would be one thing to deny her treatment if I was convinced she was going through TSW, but I couldn’t bare to let her suffer so much when I was now sure it wasn’t. I found a great Facebook Eczema support group. I think that I had been bombarding myself reading about TSW, so to get the support of non-tsw parents was a welcome relief. I think my perspective is now better balanced. Yes, I know that steroids are harmful, but right now they are relieving my daughter’s suffering. .
    Before Christmas we saw a a big improvement in her skin by switching to daily bathing with a antimicrobial bath emollient and lotion. But it went downhill again in the New Year when she wasn’t well and it proved difficult to get back under control. Finally our dermatology appointment came through and we have taken his advice to use a potent steroid ointment called Elocon for 2 weeks on all eczema from her neck down and then reduce it to twice a week. Within week 1 we felt we could cut back to the maintenance twice weekly application. I had never used a strong steroid on her neck before and It was amazing to have her itch-free and her little neck clear for the first time in almost a year. Unfortunately, it dipped again triggered by a chest and ear infection but back on the mend again.
    I’ve also, like you been trying probiotics, diet changes, and lots of different lotions and potions. Have you tried going dairy free (including no animal milk products). Didn’t work for us but might be worth a try! I hope you manage to find your daughters’ triggers which will really help regardless of whether you go down the ts/non-ts route. Have you seen a dermatologist yet?
    Best of luck Rebecca, and apologies that this update is not what you were hoping to hear!

    Catherine

    Reply
  5. Rebecca Fenby

    Hi Catherine,

    Thanks so much for your reply! I would like to join that eczema support group you referred to on Facebook–if I do a search, will it be obvious which one I should go for? What’s the name of it? Is there one specific to parents of children with eczema?

    I too have read a LOT of stories about TSW to the point that I have convinced myself that my children will go through this, which has been so agonising to think about that I haven’t slept well in days and am constantly watching them and their skin for signs of it. I could do with talking to parents of kids who have plain old eczema, particularly severe eczema as that seems to be what mine have. Interestingly, my eldest daughter’s skin is looking much better than it did in the first week off steroids, just normal sort of eczema now (though she has a lot of patches of it). I know this doesn’t mean she won’t go through withdrawal as several TSW parents have told me their kids’ skin got better before it got worse, but I can’t help but hope. My baby looks horrific though, covered in eczema all over bar her nappy area. I really feel for her, and she is very itchy, but she’s still sleeping reasonably well, is happy, and isn’t complaining about her itch as I would expect a baby going through TSW would, she’s just trying to scratch a fair deal (as she has always done with her eczema).

    Have you tried unrefined shea butter yet? This was like a miracle cream for my eldest when she was a baby and her eczema cleared up for an entire year using just this (and going dairy free as we discovered she had a milk allergy). It has always been my emollient of choice as it is natural and does a great job for my girls’ skin. However, for the last month or so, I’ve used the doctor’s emollient instead–I’m in the UK, so prescriptions for children are free, and the shea butter isn’t cheap, even when I buy it in bulk, when I’m applying it three or four times a day to both kids. I wanted to see if the doc’s stuff was as good as the shea. It seemed to keep the skin reasonably moisturised and was a hell of a lot easier to apply, but I decided to bite the bullet and buy another bulk lot of the shea since quitting the steroids to see if it made a difference to their itching. And it has! My littlest, who is the worst scratcher, has seemed much calmer since applying the shea this afternoon. Where she’d been attacking her face, neck, and wrists (the places she can easily reach) all morning, after the shea, she left herself alone, mostly. I won’t say it stopped her scratching completely (she went wild in the bath), but unless I’m blinded by wishful thinking, it seems a cut above the doc’s chemical stuff. If you haven’t already tried it, do! Make sure it is 100% unrefined though (and organic if possible) as creams that contain shea butter among other ingredients usually have a load of other irritating chemicals in them.

    Sorry, that was quite a ramble. As for diets, we are well versed in restricted diets as my eldest has been dairy and nut free for life, my littlest doesn’t do eggs or nuts, and I have coeliac disease and so don’t do gluten! We are restricting wheat for both of them at the moment, but if this shows no change, I might stop the little one having dairy instead. She is suffering the most at the moment, so I’ll try anything!

    Thanks again for your reply, and if you wouldn’t mind letting me know more details about the facebook group, I’d really appreciate it!

    Cheers,
    Rebecca

    Reply
  6. stella

    hello, I came across your blog while researching about “snake venom and eczema”. I read your posts and my son (3 and half yrs)age has EXACTLY the same eczema type as your daughter. he gets it on the eyeslids, face, mouth area, neck, head, ears, body, arms. and etc.. Face is the worst part for him. he has been battling with this stubborn eczema since he was 2months old and i’ve tried many products, steroids, non-steroids, creams, hemp oils, coconut oils, emu oils, alligator oils, etc.. and nothing seem to work but the only product that worked is http://www.doctors-defense.com/category/-Zen-Fusion-Formula-natural-psoriasis-treatment/c2

    we’ve been using this off and on because it’s kinda expensive. I recently order again ( this was our 4th time ordering) I order the “zen fusion formula” and the “maintenance formula”
    it claims that it is natural and herbal. It is really worth trying out. my only complain is that it is expensive for a small container ( it last us about a month or so ) and smells like a strong Chinese herbal medicine. you can also see the results within 1-3days. but you need to maintain it or else the eczema comes out again. Because of the strong smell, my son only use it when he goes to bed and so far it’s been really sucessful but it is 100% cure tho..
    My son also has many food ( ALL NUTs, Tree nuts, soy, egg, pork, mustard) allergies so it also tiggers the eczema. :/ I just hope all the kids will grow out of it very soon.

    Thank you for the great blog….
    How is your daughter doing with her eczmea? looking forward to reading your blogs.

    Reply
  7. Alexd

    Hi

    I had really bad eczema and was at one point hospitalised for a week. I now have very mild eczema and sometimes it’s not there at all and I’m down to using no medication at all apart from I sometimes apply hydrocortisone if I have a little flare up. I went through the medical route and had the strongest steroid creams the doctors could give me and I had eczema head to toe and spend years in and out of the doctors and hospitals. The big change came when I started getting tight neck muscles and a bad back. I went to a really knowledgeable orthopaedist and he diagnosed my back problem, muscle problem and eczema in one. He said it looks like my body is dehydrated, I corrected him saying I drink a lot of water but he pointed out it’s likely I don’t have enough salt in my diet. The body needs salt to absorb moisture and hydrate, so if you don’t consume enough your body takes moisture from your skin and muscles. I started adding more salt to my diet and kept drinking the water and I feel like a new person. Please try this and see if it can help you as well

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s