Angry and upset and fed up

[allergycakeicing]

DS is 2 and allergic to eggs, milk and peanuts and suffers from eczema. I am struggling. With all of it really. I'm upset about it. I am in a constant panic about him when we are out of the house. It seems that everywhere we go there is risk that he will come into contact with something he is allergic to. As the days go by I am getting more and more worked up and upset about it all. I'm fed up with label checking, with restricted diets, with always carrying epipens, with knowing that if he reacts I'm going to have to administer epi. I am terrified that I may need to do cpr. He is still my baby. I cannot bare the thought of breaking his ribs and compressions and breaths.

It feels like there's nowhere "safe" I can take him - toddler groups are always risky and stressful, play areas are the same. When he visits either set of grandparents he comes out in hives. I don't trust other people cooking for him. DH doesnt trust himself, always relying on me to supervise and check. My parents don't feel comfortable cooking for him or looking after him if it involves mealtime. DH's brother had v bad eczema as a child and reacted to raw egg and milk. But he was fed it all regardless and eventually outgrew it. MIL doesn't fully understand allergies and struggles to see DS as being different. She is learning but the more confident she gets about cooking for him, the more worried I get. I dont think she fully understands how severe he is (regardless of what I've said) or how important it is to not cross contaminate. She desperately wants me to let him go round and stay the night, or leave him with her for the day. When he's come out in hives infront of her in the past she hasnt noticed, nor has she noticed facial swelling, so I dont feel comfortable with it. When he has anaphylaxis it's just so quick. And she desperately tries to push me to give him soya milk "because it did DH'S brother no harm" (but that's probably a different matter).

I feel fully responsible for what DS eats. DH works shifts so is rarely around to make meals. I constantly worry that I'll make a mistake and feed DS something wrong. Or that he isnt getting what he needs. Or that there's something else he's allergic to and that's what's triggering his eczema.

I want him to live a "normal" life and I'm so angry about it all. I'm angry with myself because I feel responsible and because I cant make it better for DS and I cant take him to certain places, and I know that he needs to get out more but there isnt anywhere Im comfortable taking him. And angry with DH because he isnt about and he wont be responsible and he underplays how serious it is (didnt think DS needed nut test, didnt believe positive skin prick result, wants to feed him other nuts and sesame regardless of how many times I talk about similar proteins etc) and he isnt careful with his food around DS. And I'm angry with my friends for distancing themselves from me or saying "oh well" and thinking I'm an idiot because I worry so much. Worst of all is I feel angry with DS. It isnt his fault, but sometimes I feel so fed up with not being able to have a proper break from being mum.

I love my son. I love my DH, my family and friends. But I'm fed up with all this allergy malarky. Someone tell me it's going to get easier.

It probably will get easier, but not for a long time. My Ds has the same allergies as yours and lots of my feelings and struggles with Dh and his mother have been similar over the years. It is very frustrating as a mother to be constantly vigilant and responsible. We still tend to holiday in self catering accommodation, so it is very hard to have to think about preparing food 365 days a year.

But now Ds is 15. He eats school meals, though some days not a lot, and goes to restaurants with his friends....only one reaction so far. He still has to carry his epipen, piriton and asthma puffer with him but his reactions to dairy products are greatly reduced and I am more hopeful than ever that he may grow out of some of his allergies. It no longer dominates our lives in the way it did. So hang in there and teach your Ds about foods and what might be safe and what will almost certainly have hidden allergens.

My Ds likes to cook too, mostly sweet things he can eat.....his own shortbread, flapjack, pastries, fruit crumble etc. I know it seems a long way ahead, but I never thought we would progress this far. And I feel very happy for Ds that he has more freedom than I could ever imagine.

Good luck!!

Just wanted to say I know how you feel, dd is now 3.5 and similarly has allergies to egg, dairy, tree nuts and fish, also with eczema. She is not anaphylactic though which we are very grateful for.

It is tricky when they are 2 as they will just touch everything and so will the other kids, when she was 1 she was at a birthday party and left her with dh, he left her alone for a bit and I then found her with a pack of cheesy puffs! To say I wasn't happy was an understatement. At least now dd has an understanding that she can't have certain foods and does ask although she might not like the answer she's given sometimes!

Could you gradually get your dh more involved with some responsibility? e.g. if you go to the supermarket together, ask him to get bread for example safe for ds and get him to read the label, or when at home ask him to keep danger foods away from ds/out of reach. It sounds like he is probably influenced by MIL in not taking things seriously though? I would definitely not feel comfortable leaving your ds with MIL either!

As time goes on you will find it easier, we definitely have over the last year. I worried constantly and still sometimes do, but feel more confident in looking after dd and coping with allergies - you will too.

Just wanted to say I really feel for you. It is a tough journey, and worse if your MIL is not understanding.

Just a few thoughts, not meant at all to minimise what you are going through, but to see if there are ways of easing it a bit ... how allergic is your DS? obviously anaphylactic, but does he react to airborne particles or touching a tiny bit of something? I guess I'm thinking your panic sounds rational if that is the case, but if not then yes you need to be careful but as long as you are monitoring him and his food intake/contact with food then you can probably learn to relax into that a bit.

Agree with giving your DH more responsibility. Does he come to the medical appointments with you? could you get the consultant to outline for him the precise risks (ie death), dangers of cross-contamination, and the issue with other nuts etc. He might believe it more if he hears it direct from a professional, especially if they are a bit stern and horrified at his actions.

No way would I leave your DS with MIL. If she won't notice a problem then it's a definite no-no, even aside from the fact she might not be careful enough. Though a bit of education for her might not go amiss either - maybe she could come to an appointment too.

It is scary taking all that responsibility, but in the end it's the cross you have to bear. We have occasionally made a mistake and given DS milk and it's awful hearing your child say 'why did you do this to me, Mummy?', but in the end you are only human and you can only do your best. If the worst happens, well you have the meds, you call the ambulance and he will almost certainly get through it. If it's any reassurance, every single time we have made a mistake has been when we are on holiday and the milk packet looks different, or once I put cow's milk in a glass in the fridge for DS2 and DH gave it to DS1 while I was asleep. So it was always when we were out of the normal routine - at home you do just get into a system that works.

For CPR, I think a 2yo is way more robust than a baby. Have you done a course? Again, I think you need to trust yourself to do the right thing. I'm sure you are a lot more competent at all this than you feel :)

To be honest, I think the 2yo phase is probably the worst period, as they are touching everything and don't really understand. They learn really quickly once they are more verbal though - I was terrified about sending my DS to school at age 3 (in France so earlier) but by then he would already put his hand up and say he couldn't have chocolates etc if they were being given out. It is still tough at times, but I now have a lovely mature 7yo who is incredibly sensible about food and has an ability to say no that far outstrips his peers, simply because he has had to. He is also pretty good at cooking - I always found the food preparation stuff overwhelming, but used the cakemaking as an activity for us to do together.

Your friends don't sound like they are much help. Do you have at least one who really understands? if not, how about joining some kind of allergy support group? I did that once - didn't really get on with it, but it made me feel my son's allergy was actually easier to cope with than some of the ones in the group. I actually find this board fantastic for support about specific problems or even a general moan too.

The other thing I wanted to say is that your feelings sound utterly normal and don't feel bad about them. That said, when I was in hospital with DS as a baby after an asthma attack (2 weeks after his first allergic reaction) and feeling very sorry for myself, I happened to wander past the child cancer ward and that really put things into perspective. I try to remember that when I am feeling down.

Sorry this is so long!!! but hope some of it is helpful.

I shall offer some completely different advice. My dd suffered from severe allergies, and I too was distraught and depressed really. My next door neighbour recommended this lady who practises kinesiology and other healing techniques.

She only saw my dd three times, and within a year my dd could eat things previously impossible. She now has a mild nut allergy and no other allergies. It is amazing, and fully possible.

Look at a therapist near you, and look at the qualifications, should have a diploma. I urge you to try it, honestly.

Kniesieology is not recommended by NICE to totally counter the advice offered by emilyishere I wouldn't dream of going down that route with a child who has severe allergies as there is no recognised empirical science behind AK and you can't just try a few sessions and then start testing your child to see if they have been 'cured' when anaphylaxis is a risk.

I agree with others that age 2 is one of the scary stages with allergies, how long is it since he was diagnosed? Are you a member of the Anaphylaxis Campaign - I've found them to be very supportive when I've got blinded by panic - their advice is 'practical' and could help you feel less daunted by the whole thing. If you can get on one of their workshops, that might really help too.

It sounds like you're overwhelmed by the idea of having to treat an anaphylactic shock (totally understandably so as well). Why not look into a First Aid course - they Emergency First Aid course only takes 3-4 hours and would cover treatment of anaphylaxis as well as CPR. Don't forget as well that if it really comes down to it we got told on our course broken ribs and alive is much better than non-broken ribs and dead! You undoubtedly would be able to do anything you needed to if your child had a reaction, but a course might give you peace of mind as well.

I also agree that DH needs to step up as well in terms of sharing responsibility.

Oh and it does all get easier - honestly it does, there are minor 'ups and downs' along the way but the general trend for me has definitely been away from 'blind crippling panic and sadness' and towards 'yep, he's allergic, look at us doing everything that everyone else does'

Acekicker - and you believe everything NICE say do you? More fool you. Kineseiology and other complementary therapies COMPLEMENT western medicine, does not replace it.

My child is now healthy and can eat. Can yours?

On reflection, this thread isn't the place to get into a debate about Kinesiology. I've asked MN to delete my previous post and I will just leave these two comments to counter what emilyishere has suggested.

Kinesiology is not recognised by the medical establishment in numerous studies as a valid alternative treatment for allergies, including the BMJ, the Anaphylaxis Campaign and NICE, this includes meta studies of data and double blind trials.

And for the record my child is healthy and can eat. I won't be looking further into kinesiology on the basis that those who've had success with it chose to imply some element of neglect on my part and suggest that I'm not doing the best for him.

Err, then I suggest you do look into kinesiology seeing as you think it is about diet. If you want to subject your child to the risk of anaphylaxis, then carry on belieiving that things can't change. Or you can open your mind, do some serious research, take some responsibility for taking positive action for your child, discover that the NHS is selling you a lie, and help your child become healthy. It is possible. Or you can choose to be a sheep and follow the crowd. Your choice. I made mine.

Hope no one minds but I've created a new thread to discuss kinesiology so that this thread continues to be about helping allergycakeicing.

That sounds tough OP.

I am friends with another mother with a highly allergic child. I know we both really appreciate having someone who understands. We swap tips and horror stories. It is also wonderful to go and play somewhere and totally relax because you know the other people get it.

You mentioned in your OP that you wonder if it is something else causing the eczema. Are you going to star exploring that?

acekicker - although you are angry with me for "slagging off" people, and "ordering" people about, I would be angry with doctors of western medicine who do very little to help those in real need. So what have the doctors done? Given your child an epipen and left you high and dry, sick with worry that your child could be seriously ill or worse, and left you fully responsible for life/death 24 hrs a day. Crap isn't it? Have you noticed that doctors can very rarely "cure" a disease or condition? They are very adept at masking conditions with drugs, but cure? Think about it. No cure for epilepsy, diabetes, heart disease, you name it, it is treated with drugs to manage the condition.

If I had a serious accident and had broken bones and internal injuries, then I would definately trust the medical professionals because of their expertise.

I would be bloody angry (as I was) with the medical profession for handing out drugs with no end in sight of the misery and worry for a life threatening condition. They simply don't have the answers.

All I am saying is - think out of the box. Do some research of your own, not someone else's (like NICE etc). Do your own. I would seriously suggest reading "What Doctors Dont Tell You" It would open your eyes.

So, are you suggesting(very dangerously, I might add) that a kinesiologist knows more about nut allergies than an NHS consultant specialising in allergies? Diabetes is cured by a kidney and pancreas transplant.....a bit extreme but an option when/if it becomes unmanageable or are you suggesting that it too can be cured by a kinesiologist? I think I'd stick with insulin and amazing NHS consultant, thanks for the tip though :o/ Have you even a basic understanding of biology?

I deleted myself off here pretty much as soon as I posted in a big stressy humph (could you tell I was having a bad day) worrying that DH would read what I'd said about him and MIL (who really isnt the wicked witch that I may have depicted - she's lovely really and she obviously loves DS). And I didnt expect any replies - thankyou all. Just getting this all off my chest made a huge difference. I dont normally let it all build up like that. It's just difficult not really having anyone who properly understands what it's like.

Dukandoit - it's very reassuring to hear that at 15 your DS can eat out etc and that it isnt something that dominates your lives. I hope one day my DS can too! I dream of a day when we can go to a restaurant etc and am terrified about school.

Superoz - I try to get DH involved but I think it scares him. And he's lazy. Its hard to know what's fear and what's laziness. But I will carry on trying with him. He's much better than he was, but I think he'll never fully trust himself to be responsible.

Weta - DS reacts to airbourne particles/ tiny bits of contact in a swelling up not breathing sort of way. But he is quite managable. I'd go as far as saying I dont take risks that maybe I should sometimes just out of fear of another reaction. DH comes to appointments but picks and chooses what he wants to believe. I think it's his way of coping with it. Eventually he's going to have to accept it all. I havent done a CPR course but the clinic did give us some training. I think I'm just scared that if it happens and epi doesnt work then I'll panic etc. Any idea where I can find allergy support groups? (maybe I should look on google?) My friends are lovely but rubbish.

Emilyishere - No offense, but I'm not interested. Id rather be a sheep.

Acekicker - I definately should do a proper emergency first aid course. It feels like there's so much information I need to know about anaphylaxis and so much of it is things that DS cant tell me yet and I worry I wont see early signs. We've known DS is allergic for over a year but it's only since he had his first severe reaction recently that Ive got myself all worked up about it. I cant help but worry what wouldve happened if we didnt have epipens (which DH said we didnt need and consultant didnt want to prescribe).

Nottirednow - I clearly need to make friends with nurses and people from the army :) you're right about what you say about risk, and normally I manage to keep things in perspective, but sometimes it's all a bit overwhelming. I know deep down that it's better to take him to places with risk than to keep him indoors, just sometimes I need a nudge in the right direction. Have you been to any of the anaphylaxis campaign meetups?

Hipposgobeserk - I want to investigate further but dont really know how. DS is already deprived of foodgroups and I worry I'll just make him malnourished and still get no further.

Thankyou all again for replying, it's made a huge difference to be able to read all your replies and advice and hear that others have felt similar (though hopefully with not as much rage as I was feeling yesterday) and come through it the other side :)

allergycakeicing glad we've collectively been of help. It is enormously therapeutic to be able to talk through the worries and rant about it too. I find it reassuring to know that I'm not the only one and that the feelings of blind panic are 'normal'

I screwed myself up horribly about DS starting school for a while as well, but it's gone just fine. I think in the 'early stages' you tend to look far too far forward into the future (when DS was diagnosed aged 2 I kept myself awake all night once worrying about him going off in a teenage strop and eating a snickers bar on purpose ). This may sound patronising but in a couple of years time when you have to start dealing with moving to school, you'll have double the experience of dealing with it all and although it will be a stress and a worry it shouldn't be the huge terror it feels like now...

Like nottirednow said, you do get the 'managing risk' side into perspective over time... I went to an anaphylaxis campaign workshop when DS was 3 or 4 and it was very helpful and reassuring.

Can you get the consultant who sees DS to refer you along to a dermatologist too? At our hospital they have a children's outpatients clinic and the dermatologist runs massively late as everyone else asks him to 'squeeze in' the patients they have too if they've got eczema as well . I found it reassuring to know that between them everything was getting treated by those who had the full picture, we also got to see a dietician the following week. The help should be there for you - just stamp your feet if need be and ask for it!

I too am glad we have been of help :)
Afraid I can't help with support groups as the one I went to was in NZ and I now live in Luxembourg. Maybe post another thread asking how to find one?

I also found dieticians at the hospital moderately helpful in terms of broadening the range of meals etc...

Good luck with it all and I'm glad to hear you are feeling a bit calmer now! I'm having a bad week myself after DS had a reaction on Tuesday and spent the night in hospital, but I'm sure I'll get my head round it again eventually.