Jumpy had the most perfect, soft, peach-like skin as a baby (scalp aside). Well, until I started introducing solids, that is. From that day, the cradle cap she had had for months miraculously disappeared and the eczema kicked in. My very content, good little sleeper became an insomniac baby and the constant itching made her increasingly irritable. On good days, she would have red patches on her face and body. On bad days, she would scratch herself to bleeding point. At first, we just though she had a rash, and I tried everything I could get over the counter to make her feel better. It is just awful when months down the line, despite the fact you are doing everything you have been advised to; you see no improvement and your baby scratches until she bleeds.
Going out shopping or to playgroups distracted Jumpy and made her happier than staying at home, but when we were out and about, some people openly glared at us, keeping their distance, as if we had a highly infectious disease. Others looked at me like I was a very bad mother. People stopped me when I was shopping or just taking the children out for fresh air, asking what was wrong with my baby, and advising me to try putting cream on those scabs. Oh really? I did not think of that myself! You just feel like hiding in a hole, crying because you feel like such a lousy mum, or shouting, “So far, I have tried TWENTY-THREE creams, ointments and soap substitutes. I put ointment on her face four times already today, and it is 9.30 a.m.!” Deep down, you know this is not your fault, but you cannot help feeling like it is, and I have to say that Fay Weldon’s words are a fit description for what Jumpy’s eczema makes me feel like: “Guilt to motherhood is like grapes to wine.”
Then one day, a friendly lady came over to see us at playgroup, and she did not stare at Jumpy, she did not ask any questions… she just said, matter-of-factly, “My son had eczema too when he was a baby. It was worse than this. You are not alone, and it WILL get better. Eventually, she will grow out of it, or they will find the treatment that works for her.” I wanted to hug her… I just said thanks. She was right.
It took four months to finally find something that cleared her skin and relieved her. In that time, we were rather proactive and she was seen by eight general practitioners in England and France, more pharmacists than I could recall, an Accident and Emergency paediatrician, two A&E paediatric nurses, a dermatologist, a dermatology paediatric nurse, a nurse who took her bloods, a dietician, a paediatrician who deals with allergies and even a healer (my friend’s mum who felt bad for us asked me for a picture of Jumpy in the hope that a healer she knew could help. By that time, I was open to anything that might make a difference)… and of course, I will not mention the dozens of nuggets of advice from self-proclaimed eczema specialists or well-meaning friends and family.
We were very lucky on many levels. My family doctor in France, who is also a friend, is always happy to listen to my silly questions and give me advice. I actually emailed him some pictures of Jumpy’s rash to have his opinion when Jumpy became really uncomfortable. Our GP here is a great, caring professional who managed to get us seen by the dermatology department in hospital in the space of three hours when it became unbearable for Jumpy (the referral that was under way gave her an appointment six weeks after that!). That day, she was diagnosed with atopic eczema, and given the first ointment and steroid cream that started making a difference. The dermatology nurse we saw that day was incredibly caring and patient. She spent an hour with us to demonstrate how to apply ointments and creams on Jumpy’s sore little body and face. She also took time to answer all my questions, gave me advice on support groups and products I could try. If that is not the NHS at its best, I do not know what is…
I took a membership to the National Eczema Society that evening, and their magazines have helped me understand what triggers eczema flare-ups, what to do to relieve my baby, what the latest research is, and above all, I found out that there are thousands of people out there experiencing the same thing as we are.
Do not get me wrong, Jumpy’s skin does not look perfect; the eczema has not vanished completely to never return. It is there, it is dormant in her and it does flare up regularly, but having the right clothing, techniques, soap substitutes, ointments, emollients, and steroid creams make a huge difference, get it all under control fairly quickly, and she now rarely gets distressed because of her eczema.
Oh by the way, just in case you were wondering why I chose to put a picture of my baby’s feet on a post about eczema, here is my explanation. I did debate (with myself) whether or not to post close-ups of patches of skin plagued by eczema, but decided it was not necessary. If you want to see gruesome images of what eczema looks like at its worst, I am sure your search engine will oblige you. Yes, I do have tons of photos of my baby’s angry skin, and no, I do not fancy posting them online. When the bad skin (we did not know what it was for the first few months) got quite bad, I started writing down everything she was eating and I was also keeping a photo diary of her skin. It did not look good, and I became a tad obsessive with the pictures, taking several each day and comparing them to see at what time of that day it had got worse or seemed to calm down. You try to stop yourself, but all you can think is that. All you want to do as a mum is look after your children, see them happy and healthy, and when you see them being fractious and in pain, you just wish you were the one with the scabby skin…
This post can also be found on the National Eczema Society’s website by clicking here and a similar version features on Allergy UK’s blog. I have also written about her allergies here.
I’m so glad you eventually found something that gave her some relief. Both of my kids have had it, very mildly, though, fortunately.
It has been a rocky road, but having her allergies detected so early helped sort out the eczema…
Oh poor little one. Poor you for the guilt. I always felt (feel) that people are looking at me at playgroups, thinking ‘heck, her poor children, she can’t go to them straight away when they cry/fall over/get in a scrap’ I want to shout, ‘bog off, I have twins’. Playgroups are the source of a lot of guilt I think! I’m pleased you’ve found something that is making improvements. #ThePrompt
I agree with you about playgroups! It cannot be easy with twins… Well done to you for getting out of the house! Luckily not everyone stares at playgroups… some people are great and helpful. At the playgroup we go to every week, the helpers are brilliant, and always checking how we are and listening. Mel
This is a wonderful post, and one I think will ring true with many people – and will hopefully provide some support to others. It sounds like you did a wonderful job getting Jumpy the help that she needed, and continue to do so to keep her eczema under control. I have it mildly, although patches do flare up badly on occasion, but thankfully none of my kids have developed it. Thank you so much for linking to #ThePrompt xx
Thanks a lot Sara for giving me the incentive to write about this through #ThePrompt. I am really hoping people who have a baby with “a rash that does not go away” will stumble upon my blog, and find the link to the National Eczema Society, as they are brilliant and really helpful. Mel
I am glad to hear you found something that works, and that you had a really great experience with the NHS – perfect when it sounds like your poor baby was having an awful time. I completely understand about the stares and the unhelpful parents though, I had a baby who cried all the time and people were constantly offering me advice…as though I was just standing staring into space hoping they would help! Lucky us!
Thanks, and I do understand the crying baby thing… my second could have entered a screaming competition! It is nice to connect with mums who are nor pretending to be perfect parents with textbook babies… Mel
I really feel for you – Toby has very mild eczema (just a bit behind his knees and a few patches on his arms) and it doesn’t really seem to bother him. I have it myself though and I know how itchy it can be – I can’t imagine having to watch my baby with that. You’ve done so well to keep persevering to find something that will help.
Thanks for your message. When her eczema got under control, her big sister started having it, and it was so much easier to deal with it as I knew straight away what it was and what to do. Mel
je pensais que son eczéma était du à ses allergies et que, comme ils avaient trouvé à quoi elle était allergique, cela avait disparu. Bien sur que tu n’es pas une mauvaise maman, mais c’est clair que l’on croit toujours que c’est de notre faute on culpabilise mais je pense sincèrement que tu es l’un des meilleures mamans du monde: 3 enfants petits bientôt 4, un travail et qui a encore le temps d’avoir une maison nickel, qui a des loisirs avec ses enfants et en plus trouve le temps d’être imaginative et créative!!!!! moi j’en connais pas beaucoup . Ah j’oubliais, en plus qui es une super copine!!!!!!!
Coucou ma belle, tu es trop gentille ! C’est vrai que l’eczéma et les allergies de la poupette vont main dans la main, mais tout n’a pas disparu. C’est dans ses gênes, donc ça ne partira pas, et il y a de grandes chances que l’asthme suive… En fait, j’ai lu récemment (recherche médicale) que c’est peut-être l’eczéma qui causerait les allergies, et pas l’inverse, à cause de la peau qui est à vif et qui manque donc d’immunité. Pour la maison nickel, on va ignorer le commentaire, tu n’as pas vu mes placards ! Merci en tous cas, tu es adorable… J’ai hâte d’avoir l’option de tout mettre en français correct. Pour l’instant, maman m’a dit qu’il y avait une option traduction, mais quand elle m’a lu un passage, on a beaucoup ri ! Ça prend un temps fou, tout ça… Bisous xxx Mel
You have my empathy Mel, my 4yo has really suffered with eczema due to a long list of food intolerances so I know exactly how you have felt. Unfortunately eczema isn’t considered a very big priority over here, so docs usually just prescribe one cream after the next… we had to see a private allergy nurse to get the bottom of our woes. Glad you’ve worked out what was wrong with Jumpy, and hope she outgrows her milk protein allergy.
I’m totally with you on not posting angry eczema close ups, completely unneccesary. Lovely photo of the little feet though 🙂 xx
Thanks for your comment, it is nice to know you are not on your own… I really did consider going private at some point as she was suffering so much, even though we could not afford it. Jumpy ending up in hospital after an allergic reaction (wheat / milk protein) suddenly set the wheels in motion much quicker: her allergies were finally diagnosed and the eczema taken seriously… It should not be that way, but what can you do? Her eczema is starting to flare up pretty badly at the moment, and her sister (3) is now getting it on her legs and arms and it does not look good. Such is life. X Mel
It’s comforting to read your story and know I’m not alone, I can relate to so many of your experiences – thank you for sharing, my son is 6 months and has severe/very difficult eczema which Drs are struggling to get under control, we are having allergy tests and trying lots of creams to find best way to manage and bring flares ups under control. I feel this is going to be a long road with ups and downs but I must try to stay positive. I agree no need to post those angry eczema picture – we also keep a skin diary. All the best to you and your girls x
Your comment means a lot, Wendy. I set up my blog so that I could find a way to communicate with other mums who might be experiencing the same as me with their little ones. It is awful when you feel you are alone with those issues. Well done for trying to stay positive despite the severe eczema. It is so tough when you see your baby suffering, scratching day and night and not sleeping. Are you registered with the National Eczema Society? I have found their magazines and information sheets absolutely brilliant. I have also been thinking about writing a post to do with what has been helping Jumpy whenever she gets flare-ups. Let me know if you think that might be helpful, as it has been at the back of my mind for quite a while now. x Mel
Such an important topic as it affects their quality of life so much. My son’s skin was terrible until we took him off gluten and dairy (as he is allergic to both) xxx
Same here, the trigger for the eczema was food. After her trip to A&E (that is another post!) and further tests, we found out she was allergic to cow’s milk protein, all nuts & seeds, eggs, wheat and possibly soya (a ‘challenge’ is hospital revealed she was only intolerant to the latter). Her skin got better after she was put on a restricted diet, but fare-ups are still quite regular. x Mel
Our friends daughter had a very similar reaction you describe and I remember my friend saying she felt more like her daughter’s carer rather than her mum at one point. I’m glad you’re sharing this because there will definitely be other parents experiencing what you have and it’s so important not to feel alone. Thanks for sharing with #TheThemeGame
You are right, Iona, it feels a lot less lonely when you can share thoughts and tips with parents experiencing similar things. Thanks for your comment. Mel
Thanks for sharing this huge part of ‘family’ for you, Mel. I understand from reading your blog regularly what a massive impact allergies has on your whole family, not just Jumpy. Thanks for joining in with #TheThemeGame x
Thanks Jocelyn. Both girls’ eczema is pretty difficult to manage at the moment and I have to say it is difficult for all of us as there is so little we can do to help. I wish I was the one with the itch… x Mel
Both my kids have eczema and I’ve tried so many medications, creams, lotions, baths, etc. Nothing helps. The eczema comes and goes as it likes; no correlation with what I do/try. Their skin always feels so dry, rough, and bumpy–so sad for little babies/toddlers when they should have soft supple skin! I tried the Citrus Clear Skin Repair Moisturizer – This works for my kids!! (I understand every individual with eczema has varying degrees and types, so different treatments/lotions works differently on everyone).
It is not easy when you feel nothing is working for your children. We are lucky to have prescribed ointments and creams that really help my little girls.
I had eczema from birth and used increasingly strong steroid cream to get on top of the condition. In the end, my research led me to a condition called “red skin syndrome” which is actually an eczema type rash CAUSED by long term use of steroid creams. A charity has been set up with the aim of informing people about steroid cream dangers at Itsan.org.
I hope your little one gets some relief. Eczema is an afoul affliction and kept is even worse to see our kids suffering and feeling helpless. X
It can be really difficult at times. Seeing them scratch constantly is heart breaking but luckily the sun is helping their skin at the moment. I am not looking forward to the winter…
Mel, you are the right person I guess !!! Have you got a sun cream to suggest for an eczema prone toddler. Please dm me… if you have name.
Sunsense all the way! I wouldn’t get another sun cream. x
I am so glad you found a regime that works for your daughter. The hardest part is that everyone’s eczema is different and you have to find what works for you. My journey with my son has been a long one, like yours with lots of frustrations and some break throughs! I hope your daughter continues to get better.
Thanks for sharing Jennifer. We are going through a bit of regression with my first daughter at the moment. Spending three weeks in France with no water softener caused a flare up and I am struggling to get rid of it, grrrr.
Wonderful site you have here but I was curious about if you knew
of any user discussion forums that cover the same topics discussed in this article?
I’d really love to be a part of community where I can get feedback from other experienced people that
share the same interest. If you have any suggestions, please let me know.
Many thanks!
Bernadine
Hi Bernadine, the National Eczema Society is probably the best place for you. They have a website, helpline and they are really friendly!
Gosh reading your story feels like I’ve written it myself, only my 18 month baby is still quite itchy despite me avoiding allergen foods! His skin is better than it used to be but when he scratches himself, it’s the most difficult and frustrating thing to watch. I religiously avoid people nd conversations about his eczema as I’m so fed up of repeating myself to them all like a broken record. The worst question for me is ‘don’t you apply any creams’!!!!! I live in hope that one day he will be like other toddlers and roaming around without the need to itch!
Hi Sonia, I’m so glad you left a comment on this post. I honestly thought it would be like that forever for my little lady, but she is now so much better. She’s now 5 and she’s outgrown most of her allergies. Her eczema is under control and only flares up in the sun. Her sister’s eczema is still dreadful, especially in the winter (aggravated by central heating). Just smile at people who give you unsolicited advice and move on. It’s tough to feel like you’re being judged all the time, but at the end of the day, you’re only doing your best for your little one. xxx
I too feel like I’ve written this post, and in some way I feel slightly better knowing I’m not on my own, my daughter has just turned 6 and she has such severe ezcema nothing seems to work. She constantly itches all day and all night. She wakes us up 2/3 times every night this is after taking an hour or so to fall asleep and then is very emotional and irritable during the day. I’ve tried GP’s, ezcema clinic at a hospital, private dermatologists, 20 something different creams, steroid creams, gone dairy and egg free for a ridiculous amount of months and nothing stops the itchiness. Since June last year we’ve gone all natural on creams, she has a probiotic everyday, she also has clean bedding everyday, clean pyjamas, clean clothes, clean towels everyday And she baths twice a day to keep her skin clean. it has made a difference to how her skin looks and the flare ups aren’t as bad as they used to be however I can’t stop her itching constantly. Our GP’s aren’t the most helpful and I have no idea what else to do… There really is no light at the end of this tunnel. Any help on what to do would be really appreciated. Thankyou xx
Oh Kathryn, I feel so sad for you. You’re really going to great lengths to improve her quality of life and that is really admirable. I am amazed that you change her bedding every day! Does she have pollen or dust mite allergies? They could aggravate the problem. I am not a healthcare specialist (please always consult a doctor or dermatologist) but I wrote another blog post about hay fever (in my case, it’s all year long pollen allergies and I take antihistamines daily) with a list of natural ways to reduce the symptoms. For example, I wouldn’t ever dry my towels, clothes or bedding on a line outside because pollen would cling on to it (I tumble dry absolutely everything otherwise I scratch until I bleed, and I haven’t even got eczema). What helped my daughter most was finding what food she was allergic to. Her eczema went from moderate to mild as soon as allergens were identified (blood test & skin prick tests), but her sister’s eczema doesn’t seem to be linked to food and she tends to get flare-ups as soon as the heating goes on in autumn, and completely clears up in summer…
hi, Thankyou so much for replying and the tips! Yes she has lots of allergies. Tree pollen, horses, dog dander, sesame, raw eggs and a mild intolerance to dairy and eggs. Oh yes always tumble dry everything never line dry and in the summer I will one her nose with Vaseline to hopefully catch the pollen going up.
I have just been looking at a couple of different routes to try, have you heard of these – ezcema honey and the chuckling goat – it’s a live probiotic in goats milk…
I literally have no idea what else to do to stop this xx
I’ve never heard of the chuckling goat or eczema honey, but I find that local honey helps a bit if you eat one teaspoon every morning.
Dear Mel, Please do not beat yourself up over your daughters eczema, you are doing your very best. I am aware it is painful to watch her suffering in this way, but the main thing is that you are giving your child love and support, which is important for her. Every eczema sufferer has stories to tell on what works best, but every sufferer is different. I developed severe eczema, affecting my entire body and head, as a baby, 72 years ago. I have spent a lifetime researching anything and everything that could help, then keeping a personal record on what does, or doesn’t work, for ME. After 60 years my eczema suddenly calmed down enough for me to cease using steroid creams. Occasionally it will remind me it is still there but, armed with the knowledge I’ve acquired over the years, I am generally able to get it back under control. If not then I ask my gp for extra help.
Sadly, my experience with eczema has left me with social anxiety, but this is by no means everyone’s experience. We all cope with difficulties in our own way.
Showing your little girl that she is loved and cared for, will support her throughout her life.
With warm wishes to you both.
Lesley Greenhorne
It sounds like you mostly have things under control. What I found the hardest in the early days of dealing with eczema was that some things worked for a bit then we’d have to rethink the whole regimen for no apparent reason. One of my girls is really reluctant to having creams and ointments applied so I tend to do it when she’s asleep…
I am feeling what you felt then. My daughter is 7 months and was diagnosed with ezcema at 6 weeks. I thought finally we found a cream that worked epaderm. It made her skin feel soft and smooth but found it was just disguising the ezcema and it was in fact spreading. I continued with it as its been the best one out of many we’ve tried but now it itches her. Her ankles and behind her knees never completely looked moisturised although I applied at least 8 times a day. The Epaderm now itches her and her skin starts to spilt. I have to use hydrocortisone 1%cream for 2 days for the skin to heal and I continue with the Eparderm. But it’s a repeated cycle every week or 2. I’m reluctant to go to the Drs as they ask tell me you need to keep moisturising. Which I am doing many times but if the cream doesnt appear to be working anymore what must I do. They’ve prescribed me with Dermol which irritates my daughter instantly. I’ve persisted for 3 days as her skin on her legs looked good but her elbows have now scabbed. Her ezcema on her face and neck have flared up which is different to her body it’s like a pimpley rash. I’m worried this trial and error method is going to ruin her skin like ezcema did mine. I dont know what has caused her face and neck to break out. She is weaning dairy,egg and nut free diet and breastfeed. In your experience the ezcema cycle on her legs, heal,split,heal a normal cycle. My baby has always been itchy with the creams we have tried. And skin eventually splits no matter how many times a day I cream her.
We used Dermol and Epaderm too as well as cortisone, but after a while, Dermol started burning my daughter’s skin when I was bathing her in it. I think that her skin was going through ‘cycles’ and what worked for a few months might not work a few months later. In the end, it was an exclusion diet that helped control her eczema (it turns out she had a lot of food allergies) and Aveeno would help keep her skin moisturised. It’s awful to have to ‘try’ lots of creams, especially when you can tell your baby is still itchy and / or in pain from the skin breaking.