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

[luckysocks]

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.

:(

[Natool]

hi there. my little one has eczema since he was 2 month old and since than we were going to gp twice a week and any time we were there they were saying that the referral has been made.

Thanks to one of the mums from my older daughter class she recommended to go to see dr Adam Fox privately. it was the best money we have spent. little one was diognosed with milk and egg allergy and he recommended some steroid creams (elocon and eumovate)- we slept through the night for the first time in ages. and he suggested to take part in formula milk study what we are doing now and it is very good as if i have any questions i can contact dietician, paediatrician, nurse. we got a referral to eczema education program- was very good-packed with good advices.

When we got the letter from the peadiatrician from study stating the action plan and one of the points was -referral to dermatologist (GP please make this referral)- our GP was still relactant to give it to us but we have got it at last.we went to see him last week and will go back in 2 month time.
definitely get the referral even if you have to stay in the surgery-they just worry about their budget-not our children health.
try to avoid eggs, dairy till you get tested.
lukewarm bath for 20min with bath oil and after plenty of ointment so u can wright your name on it-got that tip from the program. put some cream on the face and hands before giving him food.
i have joint the eczemacociety-really good.

good luck with everything

[itchywitch]

My sister had really bad eczema. What always worked for her was to rub skin with cream, then wrap with wet bandages the wrap with dry bandages. At the very least it stopped her itching, at best it keep her skin moisturised.

I found;
www.rch.org.au/emplibrary/derm/Wet_dressings_A3.pdf

[poorlysicklou]

Hi, our 6 month old boy has suffered for the last four months. I've given up with the GP and done the following (which others may have mentioned, so apologies if I'm repeating info)

Wash everything hotter and use soap nuts (fantastic) rinse the machine afterwards and keep it really clean. I also bought an eco ball to tackle limescale and keep the water softer. Wash your clothes in the same way as they come into contact with little one. Often when friends have held him I see his face get red:( where it rests on their clothes.

I've gone detergent free and use castille soap for EVERYTHING now. It's amazing, you can even clean the car with it, use it as shampoo, to clean the floor, everything! You dilute it a LOT so one bottle goes a long way. It's the only thing I'll clean his bottles etc with now. Even your own products in the bath leave a residue so take care!

Investiagte Merrino wool products. They are used as base layers for sports clothing (keep you warm when it's cold, hot when it's cool blah blah...) pricey but superb. We have a sleeping bag which keeps him comfortable at night, and all his clothes are organic cotton or at least 100% cotton. He also has a lambswool liner for the car seat to keep him cool.

We have found that bathing as little as possible and in cooler water helps, and a bath is a very quick affair now, just enough to get him clean. We use Oilatum from the GP but I dont think it helps at all. He's still itchy once he gets out of water. Afterwards we cover him in Epiderm (really thick and gloopy but good) and keep him as cool as we can. This seems to help him sleep better, I think I had him too warm in the past which triggered it more.

Food wise, I cook everything and he has a varied diet (thanks to Annabel Karmel!) and haven't eliminated anything as yet. We had to really push for allergy testing and it was horrible seeing the injection, but we are currently waiting for the results. We also use organic milk, and the HV has talked about prescription milks that can help too. Ask the HV for a referral to a dietician. You are entitled to this. I very anxious about steroid creams as they appear to thin the skin out, and use them only when it gets really bad. I try to keep him really hydrated in the hope that will keep his skin healthy.

Scratch sleeves are great too. The silk mitts on them are nice and soft. I file his nails too, Boots sell tiny little nail files for 99p.
I try to get him as much fresh air as possible, and sadly swimming is avoided as it really upsets his skin:(

I keep being told he will grow out of it, but it's little comfort when you see him in pain pulling his own hair out. I know I've written a lot, but it's taken over our lives trying to make him better. I'll keep going until I succeed and will not accept the GP's lack of interest. The HV told me today I was 'lucky' to get allergy testing done due to cost implications!!!!!!!!! I feel we need to treat it from the inside out instead of just slapping harsh creams on the outside:(((((

Have a look at Itchybaby.com too.

I hope it gets better soon

[AylaFriendly]

Hello all,

I just wanted to tell you a little about myself and a new blog I have started dealing with allergies and eczema.

www.allergies-eczema-and-children.co.uk/

My four year old daughter has suffered with bad eczema for most of her little life. So bad we have been known to bathe her in the middle of the night to calm her down. After getting no where at our GPs and crying myself through getting no where I decided to research and two years ago I eliminated wheat and dairy from her diet.

Well I am not a Doctor but the results are amazing!!! Her skin is under control and she is thriving....and we even get a few full nights sleep these days.

So the blog is just about what we do, good Ayla Friendly recipes tried and tested by a 4 year old (but that we can all enjoy!!) and also about the stresses of eczema. So take a look, join in and pass on if you think it might help someone!!

x