Help please

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Veniepie
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Joined: Tue Jul 31, 2018 11:58 am
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by Veniepie on Tue Oct 02, 2018 9:33 am

Help please

My daughter is 20 months old. She was born with peeling flaking skin. She suffers an infection every 2/3 weeks and has to be out in antibiotics. She saw a dermatologist for the first time 8 weeks ago. He said she was suffering from mild eczema. This last week she has been seriously unwell. Several trips to a and e and out and of hours and our normal doctor's. All with differing opinions on what is wrong with her. Our doctor said she had a secondary skin infection of her severe a topic eczema. A and e said she had nothing more than a viral infection. Our of hours said chicken pox one time and they didn't know the next. When we went to her allergy appointment the nurse was horrified. 75% of her body is covered. She called for the senior dermatology nurse. She was so worried she called for the head consultant if dermatology as an emergency. They said she had eczema Herpeticum. They prescribed so many steroids and emollients I walked out feeling I had robbed the pharmacy. Allergy confirmed she has no allergies for 12 things they tested her for. My daughter's rash was still spreading so I researched eczema Herpeticum. I was horrified to see she needed anti virals and these were not prescribed. We went through another our of hours and hadafter being forgot about in the waiting room for more than 2 hours and several complaints later we were seen by a doctor that didn't want to prescribe. I spent 30 minutes begging him to help her. This s us more or less how it is every time she flares up. She becomes so unwell with temperatures of 39.5 and I can't get much help or help is delayed. I am reaching out here because I am sitting crying. My daughter can't touch things without pain. She can't go out. We are stuck in creaming every hour on the hour and if I miss one creaming she becomes seriously ill. I am starting to feel like I can't cope. No one is listening or helping and I have ran out of money to keep trying different things and the NHS isn't forthcoming with funding out what is wrong. It's months between hospital appointments and the go doesn't know what else to do.

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talkhealth
Posts: 1782
Joined: Thu Nov 04, 2010 3:29 pm
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by talkhealth on Tue Oct 02, 2018 1:37 pm

Re: Help please

Hi Veniepie

Thank you for your post. We are so sorry to hear about your daughter and her suffering. As a mother myself I can only imagine how helpless you must feel and that you would want to take all the pain and suffering away.

Please have a look at our eczema child free support programme http://www.talkhealthpartnership.com/psp/eczema.php and our online clinics. I am also hoping that some of our members may be able to give some advice if they have been through either the same thing with their child/children or are going through it presently.

Have you considered seeing a different GP at your practice, just for a fresh eye and opinion? If you are happy with your GP then please stay with them because having someone who understands where you are coming from and has been through this with you from the beginning makes a huge difference.

It may be helpful to have a look or make contact with our friends, the British Skin Foundation https://www.talkhealthpartnership.com/f ... .php?f=884.

Please let us know how things progress, we wish you and your daughter all the best.

Kind regards
talkhealth
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Veniepie
Posts: 4
Joined: Tue Jul 31, 2018 11:58 am
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by Veniepie on Tue Oct 02, 2018 6:11 pm

Re: Help please

My Dr is quite a nice person. He is doing everything he is able but he has admitted he has limited knowledge in dermatology and waits for reports from the hospital. So far she has had two appointments and these appointment have been a long time coming as I wanted the issue addressed shortly after birth and it has been a fight getting the two appointments I have. No other appointments have come through. The other Dr at the surgery is totally awful and I have had issues myself with that Dr and thought about leaving the practice but there are none within the catchment and strangely enough, one next to me is out of catchment whilst one miles away is, I don't really want to have to travel vey far when I see a doctor as I have BPD myself and A&D so I have a hard time as it is. Thank you for your kind words of support. I just don't know what to do anymore.

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Marcie Mom
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Location: Singapore
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by Marcie Mom on Thu Oct 04, 2018 4:09 am

Re: Help please

Hope that your daughter gets better soon and it may require a senior dermatologist/ immunologist to figure out what is the issue when the skin has several conditions at once. With regard to eczema herpeticum, you may want to check out the comments in this post to see if you can glean any useful experience from their sharing http://eczemablues.com/2012/04/eczema-h ... dangerous/

I'm not sure how the health system works in your country, e.g. insurance/ being able to secure an appointment. I have visited general practitioners who although not sure of skin problems, diligently research website like https://www.dermnetnz.org/ to try to "match" what they see in the patients with the photos and then through experience, can be quite good at diagnosing. Maybe if your current doctor is willing to explore with you, you can look up information and share what you have learnt and discuss the safest treatment while waiting for your appointment.

Take care dear
Mei
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Mei - Founder of http://www.EczemaBlues.com and Mom to Marcie
Visit Mei on her talkhealth blog all about eczema http://www.talkhealthpartnership.com/blog/author/mei_m/

Claire48
Posts: 2
Joined: Fri Oct 05, 2018 8:01 am
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by Claire48 on Fri Oct 05, 2018 8:15 am

Re: Help please

Hi, I am 48 and have had Atopic Eczema since I was 10 months old. My mother used to tie mittens on my hands at night to stop the itching, it was so bad and so uncomfortable - I have spent time in hospital with it too.

I haven't grown out of Eczema but what I can say is I drink copious amounts of water and keep my skin moisturized - I rub the lotion in and I don't let the cream sit on the top of the skin. Ointments that are too greasy, drive me mad and make me itch.

People compliment me on how beautiful my skin is - and it is! its so clear and soft - of course, I still get the odd mark but It has improved so much - and I know its down to the combination of drinking lots of water and keeping the skin moisturized.

I know our experiences are different but I hope my findings help you both.

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