Help please! Cannot get skin condition under control (pics)

[Claw001]

I’ve posted about my son before.

Just before Christmas my son (14) had some kind of severe reaction on his face. GP thought allergy. Anti allergy tablets didn’t help, it got much worse and also spread.

Back to GP who gave steroid tablets, steroid cream, antibiotics and anti allergy. It cleared, for 7 days, until the day after steroid cream stopped, flared back up again and got worse.

Back to GP, said no more steroids. Gave moisturiser and anti allergy tablets. It got much worse.

Back to GP, who gave steroid cream, antibiotics, anti allergy, told me not to use moisturiser, as son had allergic reaction to it. Nothing cleared it this time. Referred to Dermatologist.

Dermatologist today, has said eczema, definitely no more steroid cream, as it’s making it worse. He has prescribed steroid tablets for 5 days, a different moisturiser and anti allergy. Come back in a month. I told him the minute the steroids stop, it flares back up again and gets much worse each time and moisturiser doesn’t work or just aggravates it. He has ignored.

What can I do?

Ps anti-histamines helped none

I thought about going private, after hearing about £150 for consultation. (I’m a single parent, on carers allowance) I could afford that. Then a friend pointed out it probably won’t be just a one off and ongoing.

Any savings I had, have all gone towards my sons EHCP and private reports for that, not cheap!

I need to win the lottery

I’ve always had mild eczema bad as a child, slowly improving with age. I also have a number of allergies which often manifest as skin problems. I had a severe flare up several years ago where my legs from ankles to knees where very inflamed and constantly itchy, looking a lot like that shoulder pic. I went back and forth to the doctor for creams etc, nothing was working, I could only sleep in the cold conservatory with a sheet on my legs and jumpers to keep warm. Finally got referred to the allergy clinic for testing which confirmed the allergies I knew about and also flagged up a couple more! I have never been anaphylactic, so probably was a bit lax with my avoidance of certain allergens- I’m quite allergic to nuts (not anaphylaxis) cause hives and swollen tongue, but always assumed only from ingesting. It turns out that regular contact with my hands to pine nuts and almonds which I was putting in my partner’s flapjacks and he was eating every day then coming home and giving me a kiss was causing this major flare up on my legs. I stopped all contact with nuts and so did my partner and within a week the skin had calmed down and healed.
Your son needs skin prick allergy testing to determine a cause.

@Claw001 the problem was I had been skin tested before and nothing came up.

Being allergic to disodium edta is a pain because it's literally in every single product (from Vaseline cream to creme de la mer!). Every time I thought I had it under control because I didn't know the cause, one application of cream would make it flare again

My symptoms were exactly the same - swollen eyes, same facial skin response. Happy to send you photos!!

Just wanted to ask if he was tested for coeliac disease? Symptoms can be skin problems and fatigue as well as stomach upsets and it is related to thyroid issues (both autoimmune) and also often associated with low B12 and low Vit D and anaemia. Does he ever get mouth ulcers, that was another sign for me?

@namechanged0983 This face cream and Waitrose Pure body lotion do not list disodium EDTA. They are my absolute favourites.

@JellySlice thank you! I will try them both x

I still think you should try scabies lotion.

Thank you all so much. Plenty of suggestions to ask about, all noted down.

newyear I am really worried about just applying anything to his skin, without knowing. It seems his skin is so sensitive and could react badly. Would steroids tablets work, if it were scabies?

Steroid tablets, do clear it, it just reappears the minute they stop.

I doubt if it's scabies. It looks nothing like scabies. Scabies are like trails of red dots.

How is he feeling today? Any reply from the dietician?

Hi king thanks for asking, the tablets are working, his skin has greatly improved. Day 4 today, only 1 more day of steroids left. Fingers crossed it stays clear.

I hoping to get a reply on Monday.

The picture of his face looks fungal to me. Fungal infections do not like steroids and normally flare up significantly after steroid use. A scrape by a dermatologist should identify the type and should always be considered with eczema that doesn't respond to standard treatment. This looks like it needs to be treated with Ketoconazole - a type of topical anti-fungal.

Could it be eczema herpeticum? Hard to see on the phone.
If the GPwSI thought he needed treatment urgently it was their obligation to prescribe. Outpatient prescription recommendations to GPs are only for non-urgent medications, are at the GP's discretion (the hospital doctor is not their boss and cannot compel the GP to prescribe something they do not feel is indicated, or that is not in accordance with their local formulary), and the GP has 14 days to respond to the request. So if you have submitted the complaint to the GP practice I would send it instead to the consultant overseeing the outpatient clinic, with a copy to the CCG who commission that service.

blob we didn’t see anyone at the hospital initially. My own GPwSI, made an urgent referral to a Dermatologist, as she had tried for months to control ds’s skin condition, without success (and resulting in severe allergic reaction on occasion). The appointment came, we attended. The ‘Dermatologist’ applied cream to ds’s face at the appointment, despite me telling him, my son has a severe reaction. He also advised steroid tablets, for my GP to prescribe, which I took to my GP. Next day, my son’s face was red raw and his eyes swollen shut.

I googled the ‘Dermatologist’ and found he was not a Dermatologist. He was a GPwSI. Exactly the same as my GP!

I phoned my GP, told them what had happened. Told them my son needed to be seen urgently. I was told no appointments. I emailed setting out above and asked for urgent advice. GP Secretary phoned me and her only advice was it wasn’t their fault that the wrong referral was made and still refused to issue the steroid tablets. As it is standard, all requests for prescriptions take 48 hours. I don’t believe, that a GP couldn’t have signed the prescription, I handed in the day before!

I had to take my son to a&e. The hospital consultant wrote ‘severe Dermatitis’. He gave the steroids tablets, while we wait for the urgent referral he made, to a qualified hospital Dermatologist.

So, it’s sorted now, my ds got the tablets needed and the right referral has been made by hospital.

I was pissed off with my GP for referring my son to the wrong professional, this professional then making it worse. Then my GP given their mistake, was why we were in this mess, refusing to help!

Hi Claw, how is your DS? Is he still on tablets? I hope the hospital appointments comes in very soon.

I would add that you can try to start your day with a glass of water or glass of oats water (don't know how to name it, but you put about 100g of oats (not pilled) in 1L of boiled water and slowly boil it about 20 minutes) - it helps to clean the gall. Then you always put emollients on whole skin right after the bath (take bath for about 10 minutes, 34 degrees of Celsius), don't rub the skin, just dab it; you can use cream with lanolin on places where the skin is a bit harmed and hydrocortisone on worse places. Also, we always trying to moisten the air in his room. It was the salvation for my son. He tried different diets and creams and nothing. Now we do everything I have mentioned and he is better, even very good.

Explore the diet option too OP.

My DD had terrible eczema on her face which came on very suddenly. It kept getting infected and causing her face and eyes to swell up and go all gooey. So maybe he needs antibiotics too?

Allergy testing didn’t show anything up for my DD, but by a process of elimination we discovered that lactose intolerance was the culprit for her eczema.

I know you said he has a very rigid diet, but manufacturers can change the ingredients of their products and you wouldn’t necessarily know (like how all Cadbury’s chocolate now tastes like sicky wax due to all the palm oil).

It’s horrible to see them going through it. Hope you find an answer soon.

I saw a poster earlier mention gutate psoriasis. I had this as a teen and think it looks similar. It lasted for quite a number of months.

I would avoid steroids - as a long term sufferer of psoriasis. Stick to basic emollient and as someone else has said get him taking strong probiotics - kefir milk, kombucha, anything fermented. Good sleep, exercise and a general healthy diet. Is he stressed about anything? I know that sounds basic but I would seriously recommend avoiding getting trapped in the medical cycle unless it was a last resort.

Hi King he stopped the steroids last Monday and his skin has flared up again. I chased Dermatologist appointment, earliest they can do is April. So walk in at GP today.

His face is just as bad as before. No school, it’s getting ridiculous

Back from GP. GP has said nothing they can do! Just wait for Dermatologist appointment!

His poor face, is red raw all over

I’m just googling private Dermatologist,

This is ridiculous. I would have thought by now, you would have been seen by a dermatologist. Going private seems the best option at this point after having been let down so many times.
Take pictures now and have them printed and not on phone when going to the appointment.

I have a genetic condition and spend a lot of time on pubmed, the medical journal library. A while ago a did a research for you in, and several papers mentioned dupilumab. I posted the links for you on the 14th if you scroll back up. HAve you asked your GP about a prescription for it? It is available on the NHS under the name Dupixent.

If you want to do your own research, Pubmed is here www.ncbi.nlm.nih.gov/pubmed , just type eczema, chronic eczema, atypical eczema or any other word combination in the search box. You will see a list of papers and you can access the abstract.

In my experience, there is a 10 year gap between research and change in protocol, so it is with doing your own research.

Thank you king. I will have a read. It is really getting my son down and destroying his confidence.

The first appointment for Dermatologist was for June! I explained and the secretary spoke to Dermatologist and appointment was offered for April.

My GP has said they cannot prescribe any steroids, due to a) he has had enough and b) they are not controlling it. He did say he would write to Dermatologist.

I spoke to Secretary of a Private Dermatologist today. She has appointments on Saturday. It’s £250 for first consultation. I asked what a first consultation involved and explained what had already been tried. Told her I don’t want to waste £250 just going back over what has already been unsuccessful. She asked me to email, giving a brief explanation and to attach pictures.

The dietician replied, not much help, other than she cannot advise, unless a referral is made.

Vit D meds have stopped now too. GP has said won’t prescribe as paed was not clear as to whether this should be ongoing! I need to make appointment for a blood test!

My son has agreed to go to school, as he does not want to miss any more. However, he feels extremely self conscious.

I feel we are just being pushed from pillar to post. No one is actually looking at the whole picture.

Dupixent is NOT a steroid.
www.dupixent.com/atopicdermatitis/patient-assistance-program/faqs