Feeling very fed up about dd's allergies and eczema.

[suiledonn1]

She is 5 now and has eczema, asthma and an egg allergy. I suspect she is allergic to other things that didn't turn up the last time she was tested.

She regularly breaks out in hives which go with anti-histamine but which is followed by an eczema flare up. Her skin is not good at the moment. She is on her second cold in a matter of weeks which means I am on constant asthma alert with her.

She is not sleeping well and is very irritable.

Getting her ready for bed just now I noticed she has hives all up her arms and around her mouth. No idea what caused it.

We are awaiting an allergy consultants appointment but have been waiting ages.

The GP is sympathetic but isn't sure how to proceed. Last week she had an allergic reaction to the cream we were using to treat her eczema.

I would love if she could have even a month of the kind of good health dd2 has. She started school a few weeks ago and I am worried she will end up missing a lot of time or being too tired to learn and enjoy it. At least her teacher is very kind and understanding.

Sorry for the rant. I know in the grand scheme of things there are many children who have it a lot worse but it gets to me sometimes.

This is the place for ranting suiledonn1! We all know what it's like, how frustrating, sad, scary, annoying etc it can be having a child with allergies. My DS2 is very similar to your DD1, eczema, asthma and severe allergies to milk, wheat, egg, nuts and has just started school. As I posted last week, the change of season always means an eczema flare up, a cold and a wheezy chest for my little boy but thankfully this time the cold/chest has cleared up quickly (for now!) but we are still battling the dreaded eczema flare up (lots of Eumovate at the mo). He also has comes out in hives quite a lot, especially when we go to soft play or cafes/restaurants (even though he only eats his own food). It tends to be because he's touched something that had food residue on it (eg a table, chair, toy or another child!) but a dose of Piriton usually does the trick.

It's very frustrating that you've been waiting so long for an appt with the consultant. Has the GP chased it up for you and stressed how important it is? My experience of the NHS is you have to fight for everything. Do you see a dermatologist or skin nurse for your DD's eczema? Visiting the skin nurse was a huge turning point for us. After trying everything the GP could throw at us and none of it working, one visit to the skin nurse and he was a different child within just a few weeks. GPs are not experts and despite their best intentions they sometimes give conflicting or outdated advice about things like eczema and allergies.

Sometimes it just all seems so overwhelming doesn't it? I was a nervous wreck when he started school and even worse when he had his first school dinner but so far so good and I'm just glad that he's having a fairly 'normal' school experience despite all his allergies. Hope your DD feels better soon and that you get that appointment.

Just wanted to add sympathetic noises. My DS is much younger (15 mo), and just as we thought we had sussed out exactly what he is allergic to (same allergies as freefrommum's DS), he's started to have reactions to other things, especially now that he's at nursery. Sometimes I feel we're staring into an abyss of uncertainty and constant worry. Asthma is also settling in: he spent Saturday night in hospital because he couldn't breathe properly following a cold, and our house is strewn with steroids and inhalers.
What can I say except that I have masses of sympathy to you and your poor DD. Think of the good days ahead which are bound to come, especially following that much-awaited appointment.

Thanks for the sympathy. I have been feeling really down about it the last few days.

We are in Ireland, not the UK. Resources for allergies are very limited and children with anaphylactic or severe reactions get bumped to the top of the queue which is only right but it does slow things down.

Also we don't have an eczema/skin nurse. We see a paediatrician about all her issues but he just focuses on moisturising and using steroids when necessary. The problem is that we have always had problems finding emollients that don't irritate her and the only advice we get is to keep trying different ones.

We don't qualify for any free health care so that gets very expensive.

At this stage I put her in the bath most nights with Hydromol and then use the steroid cream when it flares up. I don't moisturise much at all as it doesn't help, just irritates.

Hi suiledonn1, gosh it sounds really exhausting what you're going through. We all understand though, and hopefully we can be of some help. My DD is much younger too 19mo) but we are finally getting on top of the eczema. A big part of that was identifying her allergies (dairy, egg, soya, nuts, kiwi) and then also seeing the eczema nurse.

Considering your long wait and having to pay for things yourself, I hope you don't mind me asking what emollients you've already tried. And if you've tried an ellimination diet? Dairy and soya along with egg are really common allergens in children suffering from eczema.

Do you also use hydromol as an emollient? And what steroids do you use and for how long? I am only asking to see if here is anything we all can help you with, because your GP sounds like s/he's struggling.

Also, we were told by our consultant that when all allergens haven't been identified and therefore not excluded from the diet, the dc will get more coughs and colds than when the allergens have been excluded. It must really help to be treated properly, especially with the asthma too. I've really noticed my DD has a lot less colds and coughs compared to when she was still eating dairy and soya a few months back.

I hope you're ok. You are not alone in how you feel, we all feel that horrible anxiety and then the exhaustion from having to fight with health professionals, and everybody really. I hope your DD gets a good nights sleep.

garliclover, sorry to hear about your weekend in hospital. I hope your DS is breathing much better now.

Hi Chocamum, thanks for your thoughtful post.

I'm ok - it just gets me down from time to time.

When dd was first tested for allergies (had reacted to egg and had eczema at that stage but not yet diagnosed asthmatic) egg was the only thing that showed up. She had skin and blood tests that time.

She was tested again at 3 years and the paediatrician said she had a very mild reaction to wheat and dairy. He absolutely would not support us in removing these from her diet though. He said that it is very difficult to fully exclude these things from a child's diet and that she would suffer more with the restricted diet.

I've gone through phases when I think I will do the exclusion diet but she has a poor appetite and I just don't know what I would feed her.

I am hoping we get more conclusive answers from the allergy specialist. He is supposed to be very good. At this stage I think I will wait for the appointment before trying dietary changes.

I don't know how I will deal with the guilt though if it turns out I should have pushed for going dairy and wheat free.

As regards emollients we have tried E45, Aveeno, Epaderm (which I had to order online from the UK at quite a cost) Diprobase, and in the beginning aqueous cream which was horrendous, La Roche Posay and many others. Some worked for a while but ended up irritating her and some didn't make any difference. I love the Aveeno on my own skin but it turns dd bright red.

I use Hydromol bath additive and hydrocortisone for mild flare ups and Betnovate RD for when she is very bad but that is the one she reacted to recently.

Firstly, you must not feel guilty if it turns out that cutting out dairy and/or wheat makes a difference because you were only following medical advice. Secondly, I really think you need to find an emollient that your DD doesn't react to as the only way to really sort out eczema is to moisturise, moisturise, moisturise. When my DS was first seen by the skin nurse she told us to moisturise 5 times a day! This was when he was a baby and was really difficult but it did make a difference. Now that his eczema is under control we only moisturise 2 or 3 times a day. Aqueous cream should never be used as a moisturiser only a soap substitute. I would recommend that you try Hydrous ointment or 50/50 emollient. Both are quite cheap in comparison to Epaderm (about £4 a tub) and are very greasy. They work not just as a moisturiser but also a barrier because eczema prevents the skin from working properly.

I want to agree and emphasise the not feeling guilty, it's not your fault at all. You are trying to do the best for your DD by following medical advise, if that advise ends up being wrong that is not your fault. I'm really glad your appointment is coming up soon as I agree it makes sense to wait till you see the specialist if you can.

Also freefrom is right again in sugeesting finding the right emollient. Eczema means your skin dries out too quickly and when the skin is dry it cannot function as the barrier it should be and also when it's dry it becomes itchy, your DD will scratch, this dries it out even more etc. Unfortunately everybody is different so there is no one emollient that suits all. I agree that 50:50 is probably the thickest of all the emollients so may be worth a shot. Aqueous cream contains soap like chemicals which is why it irritates the skin if left on as an emollient. I still apply emollient to DD 4 times a day, whenever we change her nappy we apply some more cream. A lot of people comment on using oats in the bath and how amazing that is, I haven't tried it myself but there is something about oats that seems to help the skin.

I think betnovate is probably a bit too strong for your DD, maybe try eumovate or synalar, we us both these on dd. I use betnovate on my skin but adult skin is quite different.

My DD use to have an awful diet and was really picky and fussy about what she ate. When we quite recently excluded all the allergens from her diet she started eating like a horse! She sometimes eats more than me now. And she tries anything. It is honestly like she's a different little girl. We were told the constant exposure to allergens causes reflux which is often silent, and then this avid exposure on the gullet causes the throat to become swollen and sore, so eating is actually very uncomfortable and they will just stick to what they know won't cause too much pain.

Also about the point of your DD being tested, I'm sure all the other MNers on the allergy boards can also tell you how testing is not at all accurate in diagnosisng allergries. They can be helpful, but definitely not conclusive. It's only through elimination that you can really see what the bodies response is to that food. For example our dd's test showed she's very allergic to white fish, which she's not at all, and that she's not allergic to eggs, which she actually has anaphylactic reactions to. So I'm afraid yout paediatrician was wrong to not try an elimination diet with such bad eczema. Eczema and food allergies are very closely linked, especially when eczema starts in the first few months of life.

I hope you are feeling a bit better and your poor DD is not suffering too much in this hot weather with her eczema. :)