Does Anyone Find it Hard to Cope and Stay Motivated?

[fionaand]

sorry to hear about your son. i have had a bad case of eczema this year much worse than other years. my mum bought me oilatum to help but that burnt terribly and made it even redder and more itchy. try asking your doctor for some hydrocorstine ointment it really helped me she also gave me hydromal lotion and hydromal emoillent for the bath and at last the eczema is fading and i'm beginning to feel normal again. good luck

[AnnaB]

Hi thanks we have tried every steroid going and have now had to turn to elidel and protopic as even the strongest stroids were failing to help. I am glad your findin creams that help

[clairebear_2uk]

thanks for all your replies, good to know we are not alone. asked dr to refer to specialist but he said no point as he is a peadiatric dermatologist and he goes to regional childrens hospital , alderhey in liverpool monthly so he is doing all that they are doing. he is on top dose of methatrexate now so fingers cross this will start to work. and trying not to shout at him all night long - hard as soo exhausted but it's not doing any of us any good xx wil keep you posted as too how he's doingxx thanks again xx

[Sammie]

I think it is brilliant that you are dong all you can to help relieve the pain and suffering of your child. And I take my hat off to you. It is very frustration when you ask for help and noone seems to be listening.
As I have said in previous posts, INSIST that your child be refered. Even if that means visiting another GP. If you shout loud enough they will start to take notice. G.P's are too keen to fob people off with steroids, and not finding the actual cause of the problem. A simple patch test or blood test could illiminate so many things that could be causing or irritating your childs skin. But it is all down to expense, and sadly what percentage G.P's are making from the latest drugs they are prescribing.
I wish you well..x

[AnnaB]

Yes I agree, ask for a referal, as a good Dermatologist will know so much more as it is their single specialist area. It was only after an urgent night visit the the hospital with a sleepless child that we got a referal we had been asking for for a year. It is our right to have the referal we wanted. So it is your right too. A dermatologist has to treat you all as a whole, taking into account the knock on effect on you and the family. Everyones lack of sleep is taken in not just the child suffering. You need someone who knows everything to do with wet wraps, Dermasilk suits, steroids, immune supressants, emollients etc. Blood tests and skin prick tests and patch tests are all carried out by our dermatologist. Our specialist also has offered community care and if needed will go into school to help the staff to understand my sons needs. I am sure a GP cannot offer this level of support.

I once attended an Eczema support group meeting for parents of children with eczema and we had all struggled to get the referals we wanted and so urgently needed. If it is what you want stick to your guns.

[Sammie]

well said annaB..
Two years for a child to suffer is to long..
If I was you I would go back to my G.P every day, and ask for a referal. even if that means a day off school. I garentee it won't be long before they grant your request.
Also, have you tried contacting your Health Visitor? They can often 'pull some strings' to speed up the referal request.
A good health visitor will understand your situation and do ALL they can to help with your families well-being.
Put your foot down girl...and don't take NO for an answer.

I wish your child well..x

[clairebear_2uk]

hi anna thanks for your advice. i am a apediatric nurse so am competent at applying all bandages and creams myself but the ezcema community nurse and dermatologist are my work colleagues so find it hard to put my foot down and demand more help. harry has not had 1 good day since he was admitted for 6 days in september with ezcema herpeticum. will have to pluck up courage next week to kick arse and tell the dr what i want not what he can offer. wish me luck xx

[tylersmummy07]

hi i so know how u are feeling at the moment, my 2 and a half year old is going through the same problems at the moment, scratching non stop not sleeping creams and meds not working, is his skin infected? if so take him to the closest childrens hospital he may need to be admitted and put on drip to settle it down, and say to them you just not coping at all you need help NOW i hope you find something i really do. i feel for you because i so know how you are feeling

[AnnaB]

Claire, good luck and stand your ground, if I can change hospitals then you can do what you need to do also. You have to put your sons quality of life 1st, can see your tricky situation though. Good luck and let us know how you get on. Anna

[_heidi_]

Hi,
I would go to a natruopath and get him tested for intolerances (food and others), food intolerances don't just show up as eczema around the mouth (I had it all over my hands). It's taken me 6 months to get anywhere with my eczema and alot of that time was wasted with GP's and dermatologist visits and creams. Then a natruopath tested me for intolerances (different to allergies) and I came up positive to a big list of things. Dairy and gluten can be big eczema triggers aswell as a many other things. It does cost about $100-$200 but at least you will know what is causing or contributing to the eczema. Doctors are just going to prescribe more steriods which don't get to the core of the eczema.