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Child with multiple allergies, eczema and urticaria

Posted: Sun Feb 26, 2017 10:46 pm
by vrichmond
Looking for any advice and help that anyone can give! I have a very near 2 year old with multiple food - both IGe and non Ige. Skin prick positive to milk and egg, however instant hives and lip swelling to multiple others. Currently on neonate active with only apples, bananas,peas,califlower ,broccoli,rice cakes, wafers and noodles being classed as safe foods. Maintaining a healthy weight despite limited diet! We have been warned that if 'milk' intake drops/stops a tube may be required to support nutritionally.

Eczema in the last year only controlled with steroids - hydrocortisone, eumovate or bento ate spending on severity, with frequent applications of emollient ointment daily, QV wash in bath, along with scratch sleeve pj's at night to help minimise damage. She has not managed more than 2 days in the last year without use of steroids. House dust mite negative on skin prick.

This time last year she also developed chronic urticaria - with random lip swelling,eye and facial swelling fro no real apparent reason. Also after most 'meals' there is an audible upper airway secretions.This can be particularly irritating for her and often tears at skin when having a flare, and inconsolable at the time of reaction. Reactions range from lip swelling, facial swelling, eye swelling, flushing, hives and woe spread eczema. She has 3 significant episodes in total with what appears to be a cardiovascular collapse - difficult rousing, thick swollen tongue and appearing frightened and dazed.

She is on daily medications - cetirizine 5mg twice daily, montelukast 6mg daily, ranitidine adjusted with weight twice daily and gaviscon. As mentioned eczema treatment daily. We carry epi pens - although never required adrenaline yet, piriton and steroids with a complete managment plan.

We have 100's of photos of her medial journey showing her skin, swelling and hives.

Despite all of this we are still seeing an increase in frequency of urticaria and eczema flares, and with every food trial in the last year failing after either the first or second day. Going out with our 'safe' areas prove stressful and usually full of exactions from all areas. No progress within a year with any condition - just different ways to manage it. A few of her medical team have suggested that she may have some mast cell disorder - yet struggling to find a expert paediatric doctor in this area to help, and with others in the team saying that it is just all the different things listed and they are not linked.

Does anyone have any knowledge/experience in this area? Can anyone point me in the direction of anyone that may be able to help? Anyone got any ideas as to how to help in any of my daughters conditions? We have been unable to start any new food trials in the last 2 months due urticarial relations and eczema flares - not that any in a year have been successful!
From one very tired and frustrated mummy!

Re: Child with multiple allergies, eczema and urticaria

Posted: Mon Feb 27, 2017 10:21 am
by Dr Sian Ludman
Dear vrichmond

It can be all consuming managing a child with multiple allergies. With such severe restrictions your child needs expert input: a specialist dietitian and a joint dermatology/allergy clinic or a paediatric allergist might be good so that your daughter can be looked at holistically. I'm not sure what services are available around you, but a chat to your gp and clinic might be useful.

Re: Child with multiple allergies, eczema and urticaria

Posted: Mon Feb 27, 2017 9:01 pm
by vrichmond
Thank you for your reply.
We do have a multidisciplinary team approach with Charlotte at the local hospital and we were referred to see the consultant allergist in sick kids in Edinburgh. We have seen him as well. We live in Scotland. Her last appointment we left with no clear plan - as they are at a loss now and say that we continue food trials when stable and that our daughter will be the true test if able to tolerate.
However all of her conditions are treated or seen as individual conditions and not linked. Half of her team think she may have mast cell disorder, however the other half think not.
Despite medications for all issues we still have significant flares and don't seem to get on top of any of it - one foot forward 20 back!
We are prepared to see anyone, try anything and go anywhere. We and her team don't know where to go at present.

Re: Child with multiple allergies, eczema and urticaria

Posted: Tue Feb 28, 2017 11:38 am
by Dr Sian Ludman
It sounds very difficult at the moment. The Edinburgh team may need to refer her on for another opinion - there are people who do specialise in different areas, maybe the Edinburgh team needs to speak to someone who can help them move forward with your daughter.