Adrenaline auto-injectors for children

[Pineapple2001]

Hello, I have recently been diagnosed with adult-onset urticaria pigmentosa. My daughter has also had UP since a baby, she is 5 now.

I have been prescribed epi-pens by my GP. I have asked both the GP and dermatologist about getting an epi-pen for my daughter on numerous occasions and both have always said they don't feel it's appropriate. I carry antihistamine and steroid cream everywhere for her in case she has a reaction but I am now imagining her having a reaction and me not being able to help when I have two epi-pens for me! I know this is not rational but it's made me really feel like I would like to have one for her too.

She isn't badly affected by the UP and wouldn't know anything about it if she didn't notice the marks.

I am wondering whether it would be possible / responsible / completely irresponsible to buy one for her. I would love to hear other's thoughts or experiences.

Thank you

[Jess-UKMasto Administrator]

Hi Pineapple, there are mixed views on epipens for children with UP. The research literature shows that the children most at risk of anaphylaxis are those with extensive skin lesions, diffuse cutaneous mastocytosis, or underlying other allergic conditions such as food allergies. The vast majority of children with mastocytosis with not experience anaphylaxis. We know that many parents would feel more confident having a junior epipen available at home and school. You would need to find a prescribing doctor in order to get one for your child. The argument that some doctors make against it (besides the price since most go unused) is that once you have one you then need to carry it and have your child have extras at school, carry them along on play dates etc. Some feel it adds rather than removes worries-- but in my personal view that is ideally a parent's decision about where the worry lies. Best wishes, Jess