Anaphylactic child

[woosey35]

Hoping someone can understand what I’m feeling..

Dd, aged 9 is anaphylactic. She has needed her epipen twice. Once while she was in hospital for a different reason (!!) and once while she was at school. In addition, she has milder anaphylactic reactions (wheezing, lips and facial swelling etc) on a regular occasion..sometimes every day. Last year, she was having an ambulance called to school 3 times a week for her over the summer.
Although she has registered allergens, she also has a lot of reactions where we don’t know the cause. Possibly something internal with her mast cells. (Her adrenal glands don’t work either).
I live my life on edge. I never fully relax. She’s often sent home from school due to maxing out her care plan. I gave up work to care for her when she was 6.
We went away this weekend for what should’ve been a bit of family respite. Dd has a reaction over dinner. Her throat swelled and her cheeks and lips went scarlet red. We started going through her care plan of steroid nebuliser first. Dh, who works long hours, seemed to get a bit edgy they cross. Probably his way of dealing with it but didn’t help the matter to be honest. Luckily we halted the reaction and dd didn’t need adrenaline on this occasion.
The thing is..all I wanted to do after was have a Big cry. I still do. At the fact our life can be so perfect, then so desperate. Literally preying that my daughters throat won’t swell any more, that her lips will go down in size etc. I just feel like I need a break. But at the same time can’t bear to be away from her in case I miss special moments.
Does anyone else get how I feel? I feel like the only one I know that lives on a knife edge praying for a smooth track and not a bumpy road. A road that goes from so calm and smooth, to suddenly mountainous.

Anyone?

Hi Woosey

I saw your post a few days a go but I am only just getting around t replying. I can totally understand why you feel so on edge, I feel the same.

DS (8) is anaphylactic also and we have had to use the epipen twice too. He also has multiple minor reactions such as rashes and swelling around his eyes. These mostly occur at school and I think it’s due to allergens being everywhere because it is difficult to get other children to be careful. DS has also had various reactions where we have no idea what the cause was, which is very scary.

I can completely relate to your weekend away, you’re just trying to do normal things and reaction occurs. I feel situations like that really knock my confidence about going anywhere new or different. Eating out for us is a bit of a nightmare, there’s certain places I feel ‘safe’ with DS eating at but this is incredibly limited. We also had a bad experience recently at a place where I had felt was quite safe for him to eat.

I do feel the same as you do, almost waiting for stuff to happen and I do imagine what could go wrong in certain situations. It is incredibly frightening how quickly a normal day can turn into a nightmare. An ambulance being called to her school multiple times a week sounds awful so I can see why you need a break from it.

I am not sure what the answer is, for me I try not to over think the reactions because otherwise I would spend my life worrying about every little thing. It is hard though when you need to be aware of things to keep them safe. I have also found having another mum to speak to who is in a similar situation with her child really helpful, do you have anyone like that you could speak to?

Thanks so much for your reply. I’m so sorry you are going through this too. It is a scary place. I do talk to a couple of friends but find it hard to say HOW scary it can be as I don’t want to sound alarmist. I actually underplay it all. I want things to be normal. I try and educate myself as much as possible and then be forarmed and prepared.
Like you say, eating out can be very scary indeed. When we eat out with friends, I’m almost on double alert as don’t want it to cause a scene and ‘ruin others time’. I just am so desperate for everything to be normal. I hate seeing my poor little girl suffer in this way.
Thanks again for your reply

We have been through similar times, and we have used the auto injectors about 8 times so far for our son. We had a week when he needed them twice due to spontaneous anaphylaxis.
During the teen years it took a while to get diagnosed as something similar to the food allergies. We were visiting three major London hospitals which collaborated together and worked out the problem.
At first they said it would burn out and not become life threatening, but it did.
Things have settled down recently but after having so many periods of near constant allergy symptoms and then repeated anaphylaxis we are always on our guard.

Sadly even though our kids are young adults they are not always as sensible as we would wish. I take a back step, but parents always wait for that call.
We have two food allergic adults in our home and they carry auto injectors. I hope things improve for you, and you daughter. I hope you can find some time to relax, and to be by yourself. I think we need time to cry and moan so we can have space to take a deep breath and carry on.

Thank you so much. Sorry to hear you’ve been though this too. Do you know the triggers? We have no idea. It’s ideopathic. My daughter is under two London hospitals who work together too. We travel 6hrs each way to take her. They are brilliant.
I’m pleased to say my daughter seems calm about it all. I’m not sure she knows the black and white of it all to be honest. She just knows it’s inportant she tells us if she feels different.

my son's is caused by stress or viral infection, it causes the different types of histamine to have a bit of clash/fight.
So exam stress, lack of sleep, or cold, etc can cause swelling for him, facial usually, which we don't stress over , just take antihistamine and its okay. But he has had tongue swelling /throat/ chest etc which means use auto injector.
Prescribed medication which did control it after we got diagnosed, son is legal adult and now refuses to take it. That is his choice, but to be fair things are better. not totally but less extreme. I suspect that for him teen hormones added to the mix which is common for people with food allergies.

Yes. We find that stress is a big component with dd too, her mast cells over react and go bonkers!! She’s on two mast cell stabilisers which have helped a lot. She too has had huge amounts of throat and chest tightness. We’ve found a nebuliser steroid and adrenaline has meant we don’t need epipen as much.
I’m sorry to hear your son is reluctant to use his meds..must be a worry for you