Help me calm down food allergy

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I am in a state of extreme distress and anxiety over my daughter’s food allergies. She is 2 years and 10 months, since March her eczema has flared to the point she was covered head to toe in itchy red skin. Our doctor made several referrals to dermatology but as of now we are still on a waiting list. We had one appointment with a private derm (cannot afford more) who prescribed strong steroids which do work to clear a flare up, but which we cannot continue to use indefinitely. She has never slept through the night due to itching, and I am at the end of my rope with broken sleep and the knock on effect on my health. DD has also had several allergic reactions to salmon and other unidentified foods, including swollen lips. Doctor has said she needs to be taken to a & e every time lips swell. It will be 18 months to 2 years on the waiting list for allergy clinic according to GP. I am in such a state. I am so frightened that she is going to have a fatal reaction, I am terrified to go to work and to leave her at nursery or with her dad and grandmother (my mum) both of who minimise symptoms. I feel that my perfect baby is now broken and I am struggling to manage my emotions, which I realise are very out of proportion. If it helps two people in my social sphere have died of allergic anaphylactic shock, so perhaps I have an inflated sense of the risks. I feel my dd will never live a normal life and it is just a matter of time before something terrible happens. Please help me
manage my emotions around this as I am not coping well at all. We have no spare cash to pay for private treatment without getting into debt on top
of existing debts. Help.

My child grew out of his food allergies but we saw the NHS consultant very quickly, go back to your GP and ask them to prescribe an epi-pen if it’s that serious.

I have been where you are and it is terrifying. You need to demand an epi pen. It is not acceptable for your daughter to be exhibiting signs of anaphylaxis and to not have access to an epi pen. You could see your GP and explain the situation but if they do not offer to prescribe you one I would escalate this. By not providing you with a pen they are risking your daughter’s life, please be very explicit about this with them and ask them to note down on her notes that this is the case.
Re the eczema, how often do you bath her? The only thing that got our sons under control was five times daily application of a thick emollient (epaderm is good) and once a week bath no soap on the recommendation of our dermatologist.
we are five years down the line now. You would not know our son had ever had eczema, he grew out of it gradually from about 3.5. He has also grown out of three of his allergies and the others have reduced enough for him to be a candidate for immunotherapy. There is light at the end of the tunnel but it is a hard and frightening journey and I really feel for you and your little girl

Thank you. We are bathing daily at the moment, but perhaps I will try reducing baths to once a week. The GP said she does not feel an epi pen is necessary (this was a phone consultation, she didn’t ask to see DD) - I am not sure if her swollen lips are symptomatic of anaphylaxis since they resolved with piriton? Doctor also seemed skeptical when I said she had reacted to salmon (more than one time) because she did blood allergy tests earlier this year and they showed no reaction to any of the major allergens, including fish. I said I don’t know if it was the fish or another ingredient in the fish she reacted to, that’s why I want her to have tests. I can’t really think straight at the moment and feel that everyone is treating me like I am a drama queen, when in fact I have until now been pretty chilled about DD who has mostly been healthy until all this started.

My son (university age) has a severe nut allergy and is asthmatic, he did have an egg allergy also but grew out of it in his teens. I have no experience of excema.

It is frightening, particularly when they are so young and you don’t have a real plan in place (no fault of yours, it just takes time to set up).

My advice is regarding any food intolerance or allergy. If your child has lip swelling, hives, rash, blue tinges to skin or problems breathing you do need to get them to hospital as quickly as possible. Possible anaphylactic what you say if you are calling an ambulance.

Something you can do straightaway is get a children’s syrup with active ingredient ceterizine hydrochloride, in the UK the brand name is Piriteze, the children’s syrup with2+ age group on the bottle. As soon as my son had hives or swelling lips I gave him a spoon of this. It is the same treatment for hayfever and can be bought over the counter.

The quicker the child takes it the better. My son now always carries the adult tablet versions. If he takes this quickly enough he does not need to use his epi pen.

I think it would help you if your family were on board and didn’t minimise. You are right to worry but it should be a shared worry. It does get easier when you have proper tests and treatment plan. We were able to afford private and my son attended the Cambridge Allergy Clinic, Addenbrooks. I know that’s not helpful to you but I just want to explain where my information is coming from.

Hi,

My son is the same age and we have been through a similar thing.

As soon as he started eating he was covered head to toe in severe eczema - he looked like he d been dipped in acid.

You can treat the eczema with steroids, but if she keeps being exposed to the underlying allergen it will keep coming back

With the steroids we have to hit to hard for 4 weeks and then taper off. Only after every layer of skin has healed, if we do it sooner it comes straight back - but your dermatologist should have given you information about this

Allergists can only really test for ige reactions (so swelling, breathing issues hives) the non ige (eczema, digestive issues) was only really worked out for us from excluding foods after keeping the diary.

I would start by keeping a food diary and log any flare ups. Hopefully you start seeing a pattern.

Dairy, eggs and soy are quite well known causes of eczema flare ups in young kids. You can cut one out at a time for 4 weeks and look for improvements.

I would join Facebook support groups - these have been a great help for us

No one understands the horror of eczema sleep deprivation until they have been through it. We are in the NHS system for allergist and dermatologist and my son is sooo improved. He rarely has flare ups. He has epi pens but luckily we haven't had to use them. We carry a anti histamine at all times. We have identified he has allergies to dairy, egg and peanuts and then eczema flares with oats also.

Things will improve but it takes time. My thoughts are with you it's just awful time when you are full of unknowns

And I completely understand no one seems to take it as seriously as you, but people do listen the more you advocate.

Also just to add, once we got on top of the inflammation we saw he was much less reactive.

I also really recommend pro biotics to start with gut healing, only dressing in cotton, and keeping cool at night

Thank you. It is the ige allergens that are more acutely concerning to me at this moment, although the blood tests we had through gp showed no ige reactions, she definitely has these. The eczema is also awful of course, though I was managing my emotions around this. The sleep deprivation is on another level. I had a collapsed lung earlier this year because I couldn't sleep for more than 2-hour stretches during a chest infection due to DD's sleeping/irritation. The whole thing is basically a nightmare, but this latest lip swelling stuff is driving me over the edge.

As others have said layer on a big emollient cream from boots or similar. And use pure Aleppo soap to wash with. I buy this from FrenchSoaps.co.uk they are very knowledgeable and helpful. I also use their hypoallergenic detergent free laundry flakes.

Keep pushing for your referral

Are you absolutely sure that your GP knows how bad the situation is because this sounds absolutely ridiculous. Both of my dc have allergies. One to foods and one to various chemicals in products. Both were seen at hospital within weeks of being referred by the GP. I realise that things will be different in different trusts but eighteen months for a child who is struggling on like this seems like a very long time.

When my youngest had her patch test, the nurse came to get us from the waiting room. We went with her and she apologised for not being ready and set up and said that hardly anyone ever turned up for the appointments and she only did two a week because they take such a long time to do.

Talk to your health visitor.

Not about the allergy concerns specifically, but for support coping with the current situation.

I've been calling weekly since March and have had God knows how many follow-up appointments, made two formal complaints and sent letters in to my GP from the private doctor who has said how severe the situation is and even offered to expedite a referral to her NHS practice, but nothing is moving forward. I am genuinely now at a loss and having panic attacks about it all. I don't know what more I can do to articulate the urgency. I am being told the backlog is 18 months to 2 years now in my area (south London) for these kind of issues, and I can either go private or wait.

I don't have a health visitor! I mean, I had one visit when she was born and then was told the provision is too stretched to see us again. I have no idea who I would even contact about this now she is almost 3?

Your GP practise should be able to give you the contact details of your local team.

Or they often put them in the red book.

I totally resonate and have been where you are. I still have PTSD and anxiety from weaning with allergies. I couldn’t actually sit with her to eat because I was so afraid of a reaction, and you just feel no one is listening.

If you can afford anything, I’d recommend membership with Dr Helen allergy, it’s £50pcm but you get a quick 121 consult. They also offer some funded places for support.

Orherwise, daily antihistamine really helped us (this was advised by our allergy consultant) and brought down the random skin based reactions. Make sure it’s certirizine and not Benadryl.

Push the GP for more support on the eczema, because that helps the reactions too.

We don’t have EpiPens either, the nhs guidance is you don’t get them until you’ve had anaphylaxis, which seems stupid to me.

It does get better, but keep pushing for appointments.

Oh and my DD tested negative for loads of allergies until she turned about 2, and then everything I thought she was allergic to finally showed up, almost like her immune response wasn’t strong enough to show on allergy tests yet - but it vindicated I wasn’t going insane

The eczema will make her prone to developing more allergies so you (and the doctors) needto prioritise getting that under control, are you getting help with identifying a suitable emollient and howto apply it? Different kids will respond to different ones, and indeed different washing regimes. If short term use of topical steroids isn't helping then the doctors should be prescribing stronger steroids or looking at alternatives. Do you have scratch sleeves for her? That can help with the nighttime scratching. Is there an allergy nurse at your GP practice? Keep hassling them and keep making the links between the eczema and allergies and the impact on you and your child.

You've been treated really badly by the doctors though, with eczema and allergies she's probably at risk of developing asthma as well (does she ever get blue lips or a 'tug' at the base of her throat?) and should really be seeing a specialist to properly assess the need for an epipen.

Dinner times are a nightmare for me now, as I am so scared she is going to react to something, I can hardly bear to eat at the table with her. I think she has picked up on my anxiety because she is massively reducing what she will eat and insisting on only having 'plain' carb-type food, no sauces or anything - whereas she used to eat widely and adventurously (olives, capers, prawns, stews, soups etc). I'm obviously also getting protein and veg/fruit where I can, but my sense of panic over her eating cannot be good for her mental health.

I appreciate that you are right, but I am really not needing to now add to my panic the possibility she could develop another condition. I am doing everything I can to be seen by the right kind of specialists and I am being ignored. It is frustrating but I already cannot sleep due to the stress and worry.

Totally, I think I lost about a stone because I was just too anxious to eat. People do not understand the stress.

I remember thinking I just wish I knew she was allergic to ‘x.y.z’ and we could avoid it, but the uncertainty is a complete killer.

Even now she will get a hive to food I know she is fine with, and it sends me into a spiral.

It’s so hard. Oh, and unfolllow allergy groups on Facebook / instagram. They sent me down so many rabbit holes that weren’t actually helpful

She needs an epi-pen. The GP needs to stop faffing around. My DS had epi-pens long before he ever got his consultant appointment.

Also, try stopping baths and have showers instead. Hard water destroyed my DS's skin. All the lotions were making it worse. He healed up after a week of showers, no cream needed.

Sorry. I'm horrified athow little support you have got. DS is 13 now and the difference in the care we got vs what you have is astonishing, shows how bad things have got in the NHS. But, if she does develop a wheeze, they will start to take the whole thing more seriously.

My GP said they are not allowed to prescribe these before an anaphylactic reaction is confirmed. I don't know if this is new guidance, but a poster above confirmed it is NHS policy.

I have a child with allergies who is now 13 and I remember the early stress so much OP so you have my sympathies, he was also 2 when first diagnosed and has grown out of some but not all.

Advice above re Piriteze is spot on, go buy some asap. IMO you should have already been advised this but all doctors apart from allergy consultants themselves will minimise allergic reactions, especially GP’s.

For us, as soon as we saw the consultant everything seemed easier to manage, we got epi pens, got a proper allergy acation plan and got all the appropriate testing. We had a 6 month wait.

Allergy treatments are growing every day, we are currently doing oral immunotherapy privately with a view to minimising reactions, it’s scary in a different way but going well.

It seems scary, it is scary but you will get used to it and soon it will become second nature to you.

Wishing you and your little one the very best.

I would not budge until they'd prescribed one to be honest. The swollen lips are such a risk. The NHS can't take its time with consultant appointment and leave you having a nervous breakdown without epi-pens. They either test her pronto or prescribe while you wait.

If they are not allowed to prescribe, I assumed that stamping my feet would not help? Obviously, I'll do the foot stamping, but if Dr is not allowed to prescribe, isn't that the end of the matter?