My Story so far

[Sally]

Hello I am new to this site

I have been reading up a lot recently and have written down everything that has happened with my daughter, I want to share my story, help and advice is much appreciated as this thing is so bad it has taken over our lives.  Hopefully things are getting better and maybe I can share what works for my daughter - sorry this post is sooooo long 


Ishaana developed lots of nasty red spots on her face when she was about 3 weeks old, although they looked bad they did not seem to bother her.  I showed the health visitor and she said that she thought this was something more than just a baby milk rash and advised that I see the doctor as she felt that she was not knowledgeable enough to deal with advice on creams for the rash she had.  I saw the doctor the same day and he dismissed this as a milk rash and said that he did not want to prescribe steroid cream for her and just to leave it.  The Rash went yellow and crusty but as he said it would go and it did I thought nothing  of it.

At 8 weeks old the spots reappear and my initial thought was that it was the milk rash again and as it did before it will go so I did not get medical help I waited for the skin to go yellow and crust and disappear, this time the yellow crust did not go and her face got weepy and red as well as yellow.  I went to the chemist and asked for some cream to help with her face the chemist took one look and said this is eczema and I cannot give you anything you need to see your doctor.  I believe because I left things for so long (unaware of the problems this would cause) my daughters infection became really bad.

We went to the doctor and he prescribed antibiotics and aqueous cream. The aqueous cream irritated her skin made it redder and more weepy till after a week of trying this I stopped using it and went back to the doctor. Both doctors at my surgery are off long term sick so I see a new doctor almost every week.

I saw the only regular doctor at the surgery she said it was not as bad as it looks and would go in a few weeks she prescribed a tub of sudocrem which we were using on and off anyway.  The sudocrem made her face look slightly less red but her skin still wept yellow puss all over her clothes and the sudocrem made her face smell mouldy – the dry skin on her face stayed and I do not think it was moisturising properly. We tried this for a week.

The next new doctor was lovely and very understanding.  He prescribed balneum cream and we asked for something to go into her bath as well so he also gave her balneum bath oil as well as eurax steroid cream, he said it wasn’t my fault I was doing everything I could but from his personal experience this was the worst case of facial eczema he had ever seen (he was an elderly doctor so i guess he had seen a lot of cases).  He told me that if there was no improvement after a couple of days things would not get better and to keep coming back to the surgery till things got better he also said to ask for a referral if I saw no improvement.  He told me to try the creams bath her first apply moisturiser and put steroid cream on an hour after her bath which we did and found this stopped the weepiness on her face and made it slightly less red.

We went back and saw another doctor the following week who prescribed us some more antibiotics to get rid of the yellow crusty infection she still had on her face. I asked for a referral but he said to see how things go. He requested to see her the following week and told me to use the moisturiser liberally (we had only been putting the cream on twice a day because the notes for the balneum cream said twice a day).  We used the balneum cream almost every hour of the day gave her prescribed antibiotics and continued with her bath regime, moisturising after and steroid cream an hour later.  This made things a bit better but her scratching has made the healing process so much longer.

I went back for a sixth time and this time the doctor told me to stop the steroid cream for about 5 days and give her a break from it.  He said he was going to prescribe a more greasier cream because this would get inside her skin deeper and he felt would help, he told me to apply this whenever she is itchy or the skin looks dry. Doctor said most people did not like the cream because it is very greasy.  The cream was epaderm the first few days her skin looked redder but I noticed that her face was not as dry and the skin on the top stopped looking flaky she has been having this cream for almost 5 days now and the benefits are amazing I lather it on like lard but her clothes do not stain and it really helps her.  My husband found the Itchy baby website and we took on board what was said about how cotton can be better than other fabrics, we realised I use a pink fleece to wrap around her all the time, we have stopped using this 48 hours ago and I cannot believe how her facial skin now looks almost normal.  (he said he would not refer her to a dermatologist because the weather is getting better and he saw some improvement.)

Her body was never as bad but I have noticed that she scratches her thighs an awful lot and the back of her legs look like a bad burn.  We tried soap flakes yesterday and hand washed all her clothes in it and I am starting a diary to try and help I am going to start with getting the washing powder right and then work through all the other chemicals in the house. We have been using fairy non biological liquid which has not helped her body skin the steroid cream gets rid of it after a couple of days but it always flares back up when I stop using the steroid cream.

The soap flakes have given her a new outbreak of small spots on her body and neck.  I think this is because we used too much and did not rinse enough I am rinsing the clothes in the washing machine as I type.


Diary Log

08 march 2010

Ishaana’s face is improving since we have started to use epaderm cream we lather it on her face after her baths and whenever her skin looks dry, she seemed happier on Sunday than what she has for weeks.

We bought some granny’s soap flakes yesterday and hand washed her bedding and some of her clothes.  We put her in them  overnight and this morning she has had an outbreak of small spots round the side of her head and chin and all over her body the problems could  be as follows either

a)   These soap flakes are an irritant
b)   We used too much soap flake powder
c)   We only rinsed once and need to do this more


Rinsing the clothes in the washing machine now going to try just using a very small amount in future to test this.

Will post more as we go along, thank you for reading.

[Andrea]

Hello again Sally

Thanks for sharing your story.

Just wondering, the items you washed with soap flakes.  Had they been washed in the fairy non-bio before this?

Just a word of warning that mixes of different Landry residues can often be more irritating than one or another.
It can take 10 washes or more to get rid of the detergent that is in the fabric (info from the slove eczema site)

We washed with just very hot water initially when Josh was at his worst   Or with bicarb to get rid of sicky smells.

Even now his clothes are hand washed in a little liquid organic soap, and rinsed twice with hot water then separately in the machine.   Soap flakes we use for the rest of the family.

I'm pleased you’re seeing a little improvement and I hope it continues. x

[Sally]

Hi Andrea

You have really helped me the advice I got from you in three days has helped more than you can imagine and done more for my baby than 5 Doctors have in 7 weeks not one of them mentioned fabric detergent sensitivity or dietary they just kept throwing creams at me and telling me she will grow out of it.

On Sunday I threw her fleece blanket away that I always wrap her in and the facial redness and weeping has almost gone, this morning her skin looked normal - like a beautiful baby (slightly red, but only slightly).

Last night was the first night she has slept in weeks without itching, every time she moved in her cot I ran over expecting to have to hold her hands down for another 20 minutes - to find a very sleepy calm baby not once did she put her hands to her face and rub  so happy - last night was the best sleep in months by miles. 

Although her skin flared up really badly on Monday, I have been hand washing her clothes in hot water and rinsing twice after in the washing machine - the big sore red patches on her body look more like smaller pale spots (and the great thing is I have not used any steroid cream - just washed her clothes in hot water and applied masses of epaderm cream throughout the day).

Cannot thank you enough

I am going back to the Doctors tomorrow for more cream, I still want a referal because I think this is something I am going to need to learn to deal with and a dermatologist/dietician or someone may beable to help me (in my opinion the doctors are General Practicioners - not skin or diet experts)  I assume that the Doctor I see tomorrow will take one look at her see things have improved and may even tell me she is growing out of it grrr

This morning I let her lay on her changing mat and kick for 20 minutes, the first time I have been able to do this in weeks - marvelous.

Thank you again

I will keep you posted

Take Care

Sally

[Andrea]

That's brilliant news   even seeing normal skin just for a little while is like such a light at the end of a tunnel.

How is she now?  I so hope things are still a bit better for you. x


I was wondering if you'd had a chat to your Dr's about the reaction she had to the yogurt? 

[Sally]

Hi Andrea

Yes I went back to the Doctors last week saw yet another new locum Doctor.  He gave me more epaderm and when I explained that she reacted badly 20 minutes after eating a yoghurt for the first time (sickness, diarhorreah, wheezing) he just said I will have to wean her slowly - I still have not given her any baby food since - I really do not feel that I am getting any help from the Doctors - I need advice on how to deal with things not to be chucked yet more cream.

I am going to get her weighed today and hopefully my health visitor will be there so I can discuss this with her, she has been pushing for a referal since the first out break.

I have been lathering her in the epaderm every hour and caping her in it before and after a bath.  There is some improvement - her skin is bright pink instead of red and the infection and yellow puss has gone from her face but sometimes it flairs up for the day or even a few hours (sunday her face was so red i can only think it was because i had an egg sandwich on saturday - by monday it was much better). 

Did you find that it took a long time to get your boys skin better?  I am washing all her clothes in just hot water i think this makes her eczema more managable but it does not go away.

After Sunday i decided to cut out almost everything from my diet, wheat, soya, dairy, citrus, eggs.  I am going to introduce them gradually back into my diet to see if they trigger anything - my husband thinks it is extreme but i am desparately wanting  her to get better, she still itches like mad an bathtimes are a nightmare.

I think i will try weaning her perhaps next month if i can work out the food allergies i am convinced dairy and egg make her ill.


Speak soon

Sally

[Andrea]

If she has suffered wheezing sickness ect after a yogurt I'd have thought they would automatically refer you!  Especially in light of the on going itching and infections.

You could try just refusing to leave the consulting room till the agree to refer you (I did this my self once for me  - I'm very glad I did and when I finally saw the consultant he couldn't understand why I’d not been referred months ago  ). 
It's maybe a little extreme, but the do seem to be messing you about.

It took along time for Josh's skin to stop flaring at the slightest thing....   Well tbh it's still dose a little, we had a reaction to one of his vests last week.
At first he'd flare up from our clothing and hair (until we changed the things the family used) he would go bright red at toddler groups. 
When the skins been in a bad way it's over a month before it functions normally again - even though it may look fine, it's very very vulnerable to flaring up again in this time.

Like you I went to extreme lengths, cutting all kinds of things from my diet and all detergents from the home.   It worked for us, then I could bring things back in to see what was ok and what wasn't.
I was fortunate to have his skin quite good by the time we weaned, making spotting reactions easier.

Dose she have her own bath?  Or is she in the family bath?

[Sally]

I saw the Health Visitor on Thursday, she said that things are getting ridiculous, she has booked me an appointment for Wednesday with a recommended locum at the surgery.  She said the same as you to sit there and refuse to move until the Doctor makes a referal - she said she is also going to speak to him and suggest he refers her, failing that she said even though she has been told she can no longer make referals she will try and refer us.

I think that the surgery are trying to cut down on costs and they simply wont refer her because it will cost them - but I have tried everything I can think of and although her eczema is more managable she still itches 24/7 and we have had some really bad nights with her recently. She has stopped gaining weight and has started to lose weight and now I feel guilty because I have cut out so much from my diet and I am also Vegetarian. So I have started eating bread and milk again and her face and body have flaired up.

I have started to wean her even though i am a bit worried about doing this we started on Saturday in the hope she will sleep better, I have found some food in the supermarket (stage 1) that is 100% organic the ingredients is entirely fruit and veg called Ella's Kitchen I feel more confident feeding her now, she had carrot,apple and parsnip she loved it. I would if I could have a go at making my own food for her but because she scratches all the time i never put her down longer than 10 minutes and she never sleeps in the day to be honest she seems to need less sleep than us-i do wonder if she was not so sore if she would have a nap in the day?  I wonder if other mums in the same situation find that their babies dont sleep much.


She has her own bath and we only use emoillient in it and have done for the past 2 months.


Bye for now

Sally
 

[Frankiecheska]

Hey Sally,

Sorry for intruding in your posting with Andrea....I hope you don't mind?!

I know, like a lot of mummies exactly what your going threw. I'm not sure if you have invested in any of the products from the Itchy Baby shop but i would defo recommend the scratch mits, i have bought 4 pair! Francesca would itch (and still does) constantly and the mitts gave me the needed breather to do the day to day running of the house and cook for Frankie and she is now weaned. I also use them to put her to sleep. I put the mitts on and her sleeping bag over the top. She still itches but she sleeps 12 hours straight :-) The mits prevent her from hurting herself as she will scratch until she bleeds :-(

The hopes relief cream is amazing along with the bees wax. I dress Frankie in Derma silk every day as i believe the washing powder we use (sure care) is still not kind enough to her skin, the results i have had are amazing! Her skin looks normal....but still itchy :-(

I hand wash the derma silk or just request some more from the doctor......

I weaned Frankie slowly having great results from sweet potato, parsnip, carrots, chicken, leak.....i've started adding cheese and she's ok.

I always ensure Frankie is cool, i find when she is hot she itches.

I was BF up until two months ago and was so scared of introducing formula but again i have had good results from Aptimal....Frankie will be 1 in June and i have my fingers crossed she is growing out of it.

I went detergent free, buying the soaps from the IB shop, Frankie reacted well. I don't wear purfume or anything i believe will irritate her.

I have started to take her to tiny tots groups, i was to scared b4 but she is loving it despite itching.

I was referred with rubbish results so my fingers are crossed for you.

x

[Sally]

Hi Frankiecheska

If you check the time on this post you have probably guessed that I am up again with baby (nothing new there).  Thank you for your post.  We turned the heating off and I am bloody freezin, but you are right she has not itched tonite so the hot environment does make her worse.  Before she became poorly she would sleep 10 hrs from 5 weeks old it was ace, now she wakes up every 2 hours or more, but things are better with the heating off.  We saw the dermasilk online but it looks very expensive do you buy it?

speak soon, im off back to bed she has dosed off.

[Frankiecheska]

Hi Sally,

I hope you got some well needed sleep! Dermasilk is available on NHS, have a look at evolve plus, i think thats now available on NHS, its a natural cream, i'm at the doctors on Thursday, i'm going to request it then.

B4 i used Dermasilk i would bath Frankie (not very often!) and cover her in emulsfiying ointment then put Tubifast garments on. The first time i used it, i was amazed with the results but i found it clogged her pores because we used it too often. So i use them when i feel her skin is extra dry (has not been for a good 4 months!) Tubifast is also on the NHS.

I switched t Aveeno cream and after 5 days of using it her skin improved. Some of the creams have SLS in and thats not good for Frankie so i avoid them.

I swear i have developed OCD since Frankie has had eczema, i ensure the house is dust free! I have wooden floor so its not too bad but i'm still like a crazy woman with a hoover or duster!

I can not add pictures for some reason but i have some of when Frankies skin was at its worst and now, its amazing the difference. The doctor said the only reason it never got infected was due to us keeping it moisturised all of the time.

I thought at first the eczema was due to the jabs but i have only just got her second set done now and we have not had a flare up, so i am happy about that.

:-)

x



 

[Andrea]

Theres other clothing Skinnies - it's also available on the NHS.  It's very soft breathable clothing.  They have a website too.

I hope you managed to get some sleep Sally. You must be shattered. x

[Andrea]

How are you both getting on?  Did you get a referal?

I'm thinking of you both.

[Sally]

Hia

Yes I finally got a referal for 12 May - a long wait but I have seen over the past 2 days some very good improvement in Ishaana's body but NOT in her face.


I am not sure why but think it could be one or a combination of the following:

1)We have not bathed her for 2 days I have been washing her with water cotton wool and soap (I lather the soap on the cotton wool and use a tiny amount of water)
2)We have been using some soap I bought off the Ichy baby website (might be camomile - cannot remember) when I rub it on her body it is like a magic crayon the red skin immediatley goes pale pink for a few hours
3) I now massage the epaderm cream into her skin (I was worried about touching her and hurting her so just lathered it on before) but I realised when she rubs the back of her neck on objects she does look very relieved so I massage her neck and body and you can see the look of relief in her face as she starts to realise that the cream we have helps keep her moisturised.
4) I have completley cut out dairy I use coffee mate in my coffee and vitalite on my bread and do not touch cheese
5) we still wash her clothes and towels in JUST WATER and rinse twice in the washing machine
6) The warmer weather is here and I am told this helps
7) we try to entertain her now she is 4 months she likes telly and giggles when we make funny noises, she loves standing on her feet and can blow raspberries  (really is hard work and we get no housework done and meals are a struggle to manage because we cannot leave her on the mat to scratch)

But I am absolutley puzzled that her face is bright red and sore and her body really looks so much better (she is sleeping better, I usually get up about 6 times in the night I am now down to about 3.


She is on her fourth course of antibiotics as a few days ago her head was very weapy and she caught her face the other day when I took her gloves off for the first time in days to let her feel her fingers, she was sat on my knee it only takes a couple of seconds to slash her face, I just have to turn my head for 2 seconds and the damage is done

Thank you Andrea and Frankie

I will keep you updated, interested in hearing how you are getting along.

[Andrea]

Hello Sally

Thanks for the update.   I'm pleased you’re having some success.

Have you read the SolveEczema site?  The fact her little body is improving and the soap helps dose fit closely with sensitivity to detergents like Josh has.  Her face still being sore would fit with that too.  The detergent residue (unless your house goes detergent free) is every ware; it's on your clothes and hair, and in all the dust in your house carpets and things.

It may also be the dairy too. (Or both - Josh is both, as is Percy) 

The worse effected places are usually the last to heal, and first to break out again.  I remember when Josh was at his worst I stopped bathing him as the water would set his body on fire.

I'm pleased you have your referral threw finally.   
The better weather dose usually helps a lot too, be careful with sun creams, I believe there is a prescription sun cream from the Dr's or we found the more natural creams like Badger sun cream best for Josh.

[Sally]

Hi Andrea

The suncream was going to be my next question, very helpful I will look into this.

We have been away in Devon for the past few days the first two days were really bad perhaps it was the holiday flat we stayed in.  We went out a lot and her face is better and I started to think about the heat and using sun cream but did not dare buy any because of her sensitivity.

We went to the sea and a lady we met a few days earlier suggested that we dunk her in the sea as her little boy had bad eczema and she did that to him at 6 months old (so bad she said she had sleepless nights for 5 years and wet bandages for him).

We did dip her legs in the sea and for a day there was some improvement there and I found that when I sat on the beach she immediatley became peaceful, still and sleepy - something she never does is rest - we got close to the sea and the sea spray wet her face - was wondering if anyone else found the sea air/water useful.

Sally