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Eczema frustration... the saga continues (there will be swearing)

29 replies

luckysocks · 15/05/2012 11:22

I posted a little while ago about DS's eczema and the brick wall we are hitting trying to sort it out. Thread here

It has taken me this long to get back to the doctors (fucking ridiculous appointment system, then a short period when it looked slightly better and I was optimistic about the new things we were trying, then back to normal and fucking ridiculous appt system).

It's so bad today that I was worried he had measles (I'm 39 weeks pg), but it's just a bug and his eczema presenting in yet another way.

Again, GP completely disinterested. Repeated exactly the same advice, despite me reeling off everything we are already doing which included said advice. Didn't even look at the areas of skin which are broken and which I'm worried are getting infected again. Completely apathetic, couldn't suggest anything new and acted as if I was being a demanding mother when I asked for repeat prescriptions of the stuff which has run out. Said that she would 'talk to them' (who?... The dermatologists. Right.) about referral but that they were very strict about who they accepted. Said in a way which suggests she has absolutely no fucking intention of talking to anyone, similar to the last GP I spoke to and who has also done FA.

Ended up in tears because I am So. Fucking. Sick. of banging my head against a brick wall. At which point she wrote me a note to give to reception, to make an appt this week to see one of the other GPs who apparently has a background in dermatology. OK fine, better than nothing.

Receptionist also acts as if I'm demanding a personal appointment with the queen, can't fit me in today because it's not an emergency, can't fit me in tomorrow because she's the duty doctor, can't make an appt for next mon or tues for reasons I can't remember and can I ring at 8am on Monday. Which takes me back to the fucking ridiculous appt system and almost impossible odds of getting an appt with any doctor, let alone a named one.

So what now? I feel completely stuck and guess that writing a complaint letter (to who?... The surgery? PALS?) is one option... changing surgery is another (although as I mentioned on the last thread, this approach seems to be fairly standard in our area).

Sorry this is long and ranty. I'm just so pregnant and thoroughly thoroughly fucking pissed off. He's in such a mess, I'm due any day, and the whole thing is ridiculous.

:(

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valiumredhead · 15/05/2012 11:54

Insist on being referred to a specialist if this new doctor doesn't help.

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valiumredhead · 15/05/2012 11:56

You aren't still using Aqueous cream are you? And oats in a sock in the bath really help - ignore if you know all this.

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luckysocks · 15/05/2012 12:00

No, stopped using aqueous cream quite a long time ago. Must try the oats in a sock, have tried Aveeno (oaty) bath products based on recommendations on the other thread.

I have 'insisted' on my last two visits. I'm no wallflower when I get going but they refuse to refer him. It makes me feel like I'm going mad - how bad does the eczema need to be before we can access proper advice??

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valiumredhead · 15/05/2012 12:02

Tbh I would change surgeries!

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fuckarama · 15/05/2012 12:07

Have you tried Hydrous ointment? DP uses it instead of diprobase, or aveeno, or aqueous cream.

The chemist probably won't have it in stock but they should be able to order it for you.

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luckysocks · 15/05/2012 12:16

That's what I'm thinking. It just reminded me of when I went to see them in terrible pain at around 24 weeks this pregnancy. The GP I saw that time had absolutely no idea what it was but offered to give me antibiotics if I want. WTF - what I want is for you to make a diagnosis or give me some advice based on my symptoms, why would I randomly 'want' to be given ABs???

I have no confidence in them at the moment at all. The problem is, my experience of the NHS generally over the last few years has been shocking and I'm getting a bit sick of fighting for every little thing. (There's a chance that I'm feeling a teeny bit sorry for myself right now Blush )

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luckysocks · 15/05/2012 12:17

fuckrama no we haven't tried that. Does it work for him?

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fuckarama · 15/05/2012 13:03

He thinks it's better than any of the other creams - it's very greasy though, be warned!

I get it ordered in and it's £6 or £7 for a big tub I think, or if he remembers he gets it on a prescription

this is the one he gets but we don't buy it online

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Klinda · 15/05/2012 14:06

Hi lucky I posted on your last thread.

Sorry you are having such a hard time and that your doctors are so bad. It took us ages to get my DS referred. First we got sent to a clinic that was manned by nurses who came out with lots of advice and different creams to try but it did not really get to the root of the problem and infections and antibiotics became the norm.

It was only after DS had been on antibiotics virtually all summer to no effect due to persistent infections in his hands and then we went to America on hols where his whole hand swelled up with infection and the doctors there gave us two antibiotics to use at once that the infection problem cleared...it seemed he needed a huge dose of antibiotics to finally get rid of the infections.

Anyway when we got home I saw a really sympathetic doctor and she referred us to the hospital at last. The doctors there were way more gung ho about using steroid creams and assured me that blasting the eczema to get it under control was the best thing to do and then using weaker and weaker steroids until it cleared up. So we used Elocon on DS's hands and this did really work, we then moved down to Eumovate and managed it this way.

Now DS is 4 his eczema is sooooooooo much better and I think this is mainly to do with him growing out of it, so hopefully your son will also grow out of it soon, but in the mean time push for some stronger steroids.

Good luck!

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Sam1973 · 15/05/2012 17:09

My son suffered badly from eczema and still has flare ups now ( hes 9) I find Hemp cream from The Body Shop works much better then anything from the doctor. It costs £12 a tub but it lasts ages. If you go in and say what you want it for, they will give you a little tub for free to try it and see if it works.

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littleweed10 · 15/05/2012 22:22

It is utterly shit and utterly demoralising when you can't get them to listen.
Four things for us helped
Washing all clothes bedding etc at 60 degrees with additional rinse. Dermatology nurse advised that washing needs to be done at this temp to kill spores, get rid of emollient residue.
Finding out our son was helped by applying soft white paraffin (base ingredient of any emollient) to any sore or brewing patches. Helped both protect and gently assist in soothing especially overnight, or help with rubbing areas such as a waistband or under the neck.
Finding out sons skin 'didnt like' germs- dermal 500 used for washing in the bath.
Lastly the fab dermatology nurse gave us same pots of about 10 to 15 different emollients to try. Her view - which is so different to many gps- was as a parent of a baby or an older patient themselves, will know within a few applications or less whether a emollient is right. A typical gp will give you a massive vat of cream you feel obliged to use whether you feel it is working or not.
So after having chance to try these samples, we still found aveeno was the best day to day maintenance cream with soft white paraffin used for problem areas.

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sashh · 16/05/2012 04:35

Change GP and insist on a derm appointment.

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tootiredtothinkofanickname · 16/05/2012 08:36

OP, you have my sympathies. DS also has eczema but it's now very well controlled and he seems to be growing out of it (he is 15 months). I know what it's like to see them scratch all night and cry with frustration.

Definitely complain, and be pushy to the point of annoying. You shouldn't have to, but it's your right to see a specialist, your DS is not well and the GP has no idea what to do to help him. Can you also try ringing PALS just for some advice, even if it might not be in their remit? Or go to the A&E when your DS has a bad flare-up? (Although I do realise this might not be an option when you're due any day now).

Failing that, is there any chance to go private and bypass the whole referral thing, and then go back to your GP just asking to prescribe what the specialist recommends? Again, you shouldn't have to, and I would definitely complain (to your local PCT, maybe?).

I hope your DS gets better soon.

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CatsSleepAnywhere · 16/05/2012 10:15

Have you looked at this website? www.eczemazones.co.uk/

They have some good advice about eczema on there.

I understand about the annoying appointment systems though at the doctors. Our's usually say ring at 8 in the morning which is no good if you are trying to get children ready for school!

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Truffkin · 16/05/2012 11:15

I just wanted to sympathise as I know how heartbreaking it is.

My 6mo son has eczema, which we believe is genetic as I've had it since birth. This has helped me, as I've spoken 'from experience' and HCPs have been more inclined to be persuaded by it!

We've just got a referral to a paediatric dermatologist (appointment a month away and counting down!) but have so far tried:

Oilatum - bath oil good, cream ok
Aveeno - not moisturising enough for DS (although I use it fine)
Dermol - no effect
Eumobase - no effect
Skin salvation - expensive and didn't see much impact
Dermabase - using now, seems to be good
Boots Botanics mild intensive baby cream - very moisturising and smells nice!

My best find has been 'scratch sleeves' as they stop him from breaking the skin (therefore reducing bleeding and infections) and am waiting for some 'silver sense' sleepsuits to arrive. We have found bathing helps to soothe as he will happily splash about for a while, giving the oil chance to do its thing, the water cools sore patches and the cream works better on damp skin. I bathe him twice a day sometimes if he's really uncomfortable.

I have been lucky to have more understanding HCPs than you appear to have. In your situation, I would see the recommended GP and literally say you are not leaving the surgery without a referral to a dermatologist.

My hope for our referral is that we can find something to soothe the itching so DS can sleep for longer stretches, which in turn will give his skin time to heal overnight and break the cycle.

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Zzzzmarchhare · 16/05/2012 15:49

Hi, just a few things that have worked for me and am now using them for my baby (not sure what all the dd etc mean!) as I have always had really bad eczema which you have probably already tried but worth a mention. I avoid anything with 'parfum' as an ingredient- switching shampoo to Simple products. I also use non-bio washing powder.
I have used loads of moisturisers, bath products and steroid creams and some work, some don't, some work for a while then need changing.
Moisturising before a bath or shower helps stop the skin dry in the first place

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TheFlyingFishFinger · 16/05/2012 19:40

Ring on Monday, and kick of an absolute flying stink bomb. Unfortunately it is the only way to make them listen, don't back down.

Hopefully the doctor with a dermatology background will be more helpful, if she's not, keep saying you want to be referred. If she says no, make her look through your DC medical records to see the ammount of things you have already tried.

I'm 30 and I have bad eczema, I STILL go round in circles with it. I got sent to dermatologist at the hospital and had UV therapy, it didn't work. I was having bursts of steroids all the time, I was so so so poorly cause it was so infected. They then put me on immunosuppressants, I was so Ill.

Just stick with it and fight for you DC, you're doing an amazing job already. Smile

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luckysocks · 17/05/2012 09:10

Thanks so much for the support/sympathy/advice - it makes such a difference as I do feel I'm going a little crazy sometimes with this Confused

Yesterday evening we had a small breakthrough (I hope). I mentioned in the OP that I was worried about DS the other day, as combined with the strange, spreading rash he hadn't been well at all over the weekend. When I collected him from nursery yesterday, they were concerned that his wee had been brown. Bearing in mind it's only the second time in 2 years that they have said anything except 'he's been absolutely fine!' on collection, I started to worry again that there is something going on which hadn't been picked up. So I called NHS direct who wanted me to contact the GPs to be seen if they wanted to check him over (almost 6pm by this point).

The duty doctor was just about to finish but spoke to me before she did... and just happened to be the dermatology doctor I was supposed to make an appt with yesterday but couldn't (because she was on duty....). She told me to come straight in.

We were the only ones in the surgery, and when she came out of her office to collect us, DS had just escaped me and was running in a circle around the chairs in the waiting room, shaking his bottle of wee shouting BUBBLES (real emergency, then Blush ). Anyway.

She explained that his eczema had become infected again, which had caused the temp/dehydration/spreading. She prescribed antibiotics and a new emollient we haven't tried before. But I also got chance to speak to her about further action, what we can do in a week if this doesn't clear it, and although she didn't refer us at this stage she did have a plan for further treatment if necessary and she did mention the dermatology nurses. She listened and gave him a proper check up and didn't treat me as if I was just getting it wrong before repeating exactly the same crap advice but... more... slowly.

So I'll be making sure our follow-up appts are with her, even if we have to book well in advance. He's still a mess and it's still not a referral, but at least I feel like we've made a baby-step forwards. Particularly as it will have to go on hold for a few weeks anyway while baby arrives!

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Hoopsadazy · 17/05/2012 09:20

You are certainly not alone. You'll never get it sorted until you get past the GP and to a dermatology consultant. You may have to refuse to leave the surgery until referred but once you get there (after long waiting list) you will be fine. Have to just insist.

Ask for Epaderm ointment in the meantime. Some info on: //www.myitchyboy.co.uk

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TheFlyingFishFinger · 17/05/2012 09:23

Brill news Lucky, hopefully this is the start of being able to find a way to control his poor skin.

Pretty good bit of luck you managed to see her Grin

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Truffkin · 17/05/2012 22:20

Great news! Sounds like this new doctor is much better for you, a great bit of luck.

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butterfingerz · 18/05/2012 15:25

My 11 month DS is what you'd call an 'atopic' baby. He has flare ups of eczema, gets a bit of a wheeze when ill (possible future asthma) and has allergies.

His wheeze and eczema always flare badly when he has milk or yoghurt, he's actually ok with cheese and butter. He also has an allergy to peanuts but we obviously avoid that entirely. Now that I avoid milk (and yoghurt), his eczema is not bad at all and his wheeze only appears with say environmental triggers like pollen or dust. I've also started washing with soapnuts (pardon me whilst I go and weave some lentils!) as I find regular washing liquid is so scented and concentrated, it even irritates me.

How did get on with avoiding dairy? Allergies tend to be to the foods proteins so it's not always necessary to avoid all dairy, like I said my son is ok with butter. I figure he's ok with cheese as cheese has enzymes to help break down the proteins. I might even try him with raw milk as I hear that's full of natural enzymes so some milk allergy sufferers can tolerate it.

If I was you, I'd definitely persist down the dietary route... if not dairy, then wheat, I'm 99.9% sure that there will be a trigger for your sons eczema. To be honest, I don't think any doctor will cure your sons eczema,
I doubt any GP would advise you to eliminate dairy.You said the nursery were still giving him dairy, why not tackle that? My DS is terrible after even small amounts of milk, you could send him in with his own lunchbox, snacks. And you needn't worry about nutrition, most non-western cultures don't have any dairy at all, my DP is Nigerian and he never had cows milk as a child or any dairy for that matter.

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Boboli · 20/05/2012 20:57

OP - I've just come on here to post exactly what you have, ie to see whether we should be being more forceful about seeing a dermatologist.

My DD exactly same age, her eczema is just getting worse and worse - spreading from neck to knees. It has been infected twice in the last 6 months. We want to be addressing the cause as well not just treating the symptoms - I just don't know where to start.

Our Doc says the Dermatologists are not accepting eczema patients anymore as there's no cure???

Sorry, no advice for you as feel like a beginner myself but just wanted to let you know you're not the only one and I'll be taking some of the tips here!

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jujumum78 · 22/05/2012 12:08

I am natural's Calendula Soothing Salve works for my DS toddler. Thankfully he doesn't get it all over his body really bad just patches.

I second butterfingerz thoughts about diet. My friend's DD had eczema that cleared up after cutting out tomatoes of all things! I realise that finding the trigger is a nightmare but good luck!

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luckysocks · 22/05/2012 14:22

Hi Boboli, perhaps we can find a solution together!

I was talking about this with a very good friend yesterday, whose son had terrible eczema as a baby but who got referred to the specialist by a locum doctor. The opinion of the their consultant was that prevention is far better than cure, and that long term use of steroids is not an appropriate solution. Well, duh Hmm So if we know this and the specialists know this and the principle applies to almost every other aspect of healthcare.... WTF is going on with this refusal to identify the cause of eczema?

I'm certain that there is something specific triggering DS's flare ups. After a week of antibiotics, the new emollient, increased dosage of the steroid cream and basically smothering him in cream every time the poor bugger stands still, his skin is about as clear as it gets. But I know that whatever it is will set off another flare up before too long which takes us back to square one. While he's at nursery it's almost impossible to keep an accurate food diary and the options are endless anyway.

I'll be making a bookable appt with the better GP this week (as it will be a few weeks before we get to see her). We're seriously considering going privately and although things are on hold now until baby's here, I suspect that this may be our next step.

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