I’m hoping someone may be able to offer some advice. Apologies if it’s long I’m just trying to give an accurate picture.
My son has just turned 16. He has a history of asthma (though he seems to be growing out of this) and a long list of allergies.
For many years he’s struggled with heat related itchiness on his hands and feet / ankles such as after a hot bath or shower, or getting too hot in bed (I have the same issue, with my legs), Dr said its quite common and theres a name for it I can’t remember and its not really a concern.
2 years ago he suddenly developed what was diagnosed as eczema on his hands, they were very dry and itchy, his fingers were splitting when he moved them and he was covered in cuts and had removed all the skin up the outsides from scratching. We tried every cream on the market to no avail. Dr’s prescribed emollients to leave on overnight which helped a bit but overtime this extended to his arms. Again the Dr’s tried different creams just reiterating he needs to be using at least 4 times a day including during school which he struggled with a little.
He then started to complain his face and neck were starting to feel dry & irritated, he was told he could use the emollient on his face so he was putting that on at night. We then got a notification that they were changing the brand of emollient but did not say it couldn’t be used on his face. Nothing was helping his arms at this point and he was cut to ribbons, they tried a steroid cream (which states not to use on broken skin on the leaflet) but it made him sting so badly he wouldn’t use it. One night he got hot, the emollient creams were runny and ran / got wiped into his eyes, he had a pretty bad reaction and he rubbed away 8/9 of the 11 layers of his corneas and ended up in A&E having to have anaesthetic eye drops put in every 20-30 minutes due to screaming with pain. He was then referred to an ophthalmologist and had to have drops in his eyes for several months. Whilst he was in A&E he was so irritated and clawing it his skin and bleeding everywhere that a Dr came & prescribed him oral steroids, antibiotics because they said his arms were infected and told him to take piriton on top of his normal antihistamines that he takes for his allergies to help with the itch. They made such a difference but of course as soon as he finished the very short course it all just flared back up. The Dr text to say the new emollient was not safe for use on the face and changed the emollient back!. Prescribed more creams.
He then started with issues on his legs. A dozen trips back and forth to the GP we just keep getting told ‘use them more’. He’s tried steroid creams at low dose that do not help at higher doses sting. He then developed the eczema down his sides. The GPs were of little help. Eventually they referred him to a dermatologist (exactly 12 months ago now).
Over the summer months his skin did improve quite a bit which helped him cope a little.
Come autumn / winter it’s just gone downhill rapidly. He shaved his legs because he thought it would help get the creams on better. After more antibiotics for infection, another dose of oral steroids and multiple weeks of topical steroid things were much improved, until of course he had to stop the steroids again, even though he weaned down strengths. We keep getting turned down for repeat prescriptions of standard cream too because he’s ‘using too much cream’ its a bloody battle to get enough.
At this point he was getting upset because some days he physically could not shower for the pain and wouldn’t leave the house without showering. Sometimes the irritation is so bad he’s punching walls out of frustration. He’s had a tonne of time off school. He’s doing guitar and engineering at GCSE, two subjects he loves but heavily involve using hands which he struggles to do. He was / is barely sleeping so was / is constantly tired and was put on prescription strength / addictive antihistamines to try help with the itching and to help him sleep but they did nothing. The GP wrote an exopodite letter to the Dermatologist in December.
In Feb my mum paid for him to see a private dermatologist who prescribed the tiniest tubes of Protopic given the size of area to use twice a day, however he’s been told he needs to cover up and stay out of the sun because the cream increases the risk of cancer - awesome just as we are heading towards summer. Its done nothing and his skin is getting worse.
We are now at a point where it’s literally his whole body. At home he won’t wear clothes because he says it hurts when they touch or rub against his skin. Some days the thought of showering makes him upset because it hurts so much. He barely leaves his room for this reason and has missed a tonne of school due to the same. He’s not only sore but very self conscious of how bad his face & hands look. He no longer goes out socialising with friends, doesn’t want to attend prom etc. He just sits in his room covering himself in creams when hes not in school. He’s perpetually in a bad mood because he's sore, irritated and tired which makes homelife stressful as does everything he touches being covered in greasy slime. I’m constantly having to walk round wiping everything he’s touched.
He showers once a day, he uses very cool / cold water. He uses prescription shower cream. He’s on antihistamines. We’ve replaced his bed, mattress, duvet and pillows and they are all anti-allergy & have anti-allergy protectors. The emollients make his bedding disgusting and thick with slime so he washes / changes sheets every few days. Everything is washed at 60 degrees c. We tried changing to non-bio washing tabs and removing fabric softener of any kind hes only getting worse. It’s having a massive impact on us both mentally as well as him physically.
We finally have an appointment with an NHS dermatologist in 3 weeks. I’m worried that all they are going to do is prescribe more bloody creams and turn us away.
Has anyone found something that actually helps or can advise on things to discuss with the dermatologist because this last two years has been pretty awful. He’s had other health issues on top of this so its all just getting a bit too much.
Sorry if I’ve rambled. Thank you if you made it to the end.