Child driven mad with itch: dermatographism - any suggestions?

[LeDoThoil]

For months now DS10 has been driven demented by a terrible itch, mostly at night. He has been diagnosed with dermatographic urticaria, heat sensitive type, and prescribed high doses of antihistamine. The haven't helped and seems that they may have caused a bad side effect so (on medical advise) we stopped them a few nights ago. Last night was horrific, and we have no remedy. Obviously we will be going back to the GP but has anyone any suggestions for treatment?

We have tried almost all moisturisers known to man I think, also oat baths. None effective so far as we can see though obviously we keep up the moisturising. We have done allergy testing, none has shown up. We have done all the changing washing powders, sheets, pyjamas etc. The dermatologist says anyway it is not an allergy.

If anyone has been through this with their child, we would appreciate any advise, thanks.

I have cholinergic urticaria and dermographism I've had it since I was 12
Cetirizine at a high dose was helping but recently mine has got really bad
There's some other options so I'll try and remember as I've been researching recently!

You've got your none drowsy new generation antihistamines like loratidine and ceterizine for the mornings
Then something like an older generation sedating one for night such a piriton
The other generation of antihistamine like fexofenadine
H2 inhibitor like ranitidine
(Currently I take all 4 of the above!)
Montelukast is often used too
Calcium channel blockers
Beta blockers
Then you're into stuff like cyclosporine and (what I am asking for) Xolair

Oh and there is a cream the doctor offered me - I didn't take it as mine is head to toe but it's meant to help the itch and be a cooling one?
Magicool spray is also fairly instant relief. If he's getting too hot, something like a chillow pillow or keeping a fan on maybe

Thanks so much YesQueen, great suggestions there. So grateful for something to try.

I have developed similar out of the blue. Is the itch a rash?

Anyway, I am finding relief with quercetin plus vitamin C tablets (quercetin good for allergies), probiotics, Eucerin cream and a nightly dose of Benadryl.

This might help too
https://www.rcpe.ac.uk/sites/default/files/spickett.pdf

Have you tried 100% aloe gel? It works on the itchiness of sun allergy for me. No harm done if it does nothing.

Agree with PP, there are lots and lots of different antihistamines available, it may just be a case of needing to work your way through them to find one that works.

Your DS has my sympathies, I've had this condition and the impact it has on your life is awful, I honestly don't think GPs understand. I ended up paying for a private dermatology referral. The dermatologist prescribed me a high dose fexofenadine (GP said no way would she be allowed to prescribe that much. Used to need carrier bags at the pharmacy just for a month's worth!). It did the trick though. I was lucky and after a few months it went away (mine was linked to a weird autoimmune reaction to a bug). I think I had montelukast as well but it was the fexofenadine that did the trick.

Best of luck with it x

There are also urticaria specialists which I saw. Sadly I have just hit 23 years with mine and it is not budging so I'm back to dermatology at the end of this month and I'm not leaving until I talk to someone about Xolair injections!

My Ds2 has had dermographia since he was a wee boy. He's 22 now. He takes 180mg of Fexofenadine a day and it keeps it reasonably controlled. His is triggered by all sorts of things - sunlight, touch, clothing, water....

You can get an anti itch cream from the GP which is quite good, but is only really feasible if you're using it on small patches at a time, like where your t-shirt neck has rubbed or whatever.

We're going to try a private dermatologist I think, I'll ask about other anti histamines. It's so tough on him.

Hi
Any update of your son's rash?
My DD8 has it for nearly 2 weeks now. GP asked us to do a few blood test for hayfever, dust mites etc. I'm giving her piriton atm. She is getting it whenever and wherever she rubs or scratches her skin.
Many thanks
M very worried 😥

Anyone there please? Any advice and update? X

Bit of a wild card but my sil had some success with Chinese medicine for her urticaria. It did ,however,involve drinking a not v pleasant brew so may not be the answer for your son .Though I guess they may have alternative stuff .
My sil is a very conservative middle class person and only went down the Chinese med route in despair as other meds weren't working .

@ Peridito
Thank you for your reply. My Dd is only 8
.not sure if she will take the brew🙄

No ,I know .Just thought I'd put it out there in case it helped anyone else who was suffering .
I'm so sorry for your child and for you .Itching is just torture .I hope a private consultation will help . for the youngsters suffering , for the parents .