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Just when you're starting to think that life might not be such a bitch after all...

(21 Posts)
casabevron Fri 22-Mar-13 17:52:18

Okay, before I start I want to make it clear that I am here to wallow in self pity/vent about how bloody unfair life is for ds. If you don't like self-indulgence, you might want to look away now...

I haven't been here for a while, to be honest it wasn't helping me come to terms with ds having allergies (to egg and cashews). I am a bit of an over-thinker, and reading other people's experiences was just making me too anxious. We had our annual appt for ds in December last year, and although his egg results were still a strong positive, his spt for cashew had gone down to 2mm and his blood result was only 0.1 over the negative value. He was booked for a challenge, and though he failed to eat the full amount required, he managed over half. Taking into account his low results, and the amount he had managed in the hospital, we were given the all-clear to give him cashew at home and try to increase the amount given as he got used to eating it.

All went well for two weeks, ds liked the cashew (I mixed it with chocolate Philly and spread it in a sandwich!) and was eating it 2 or 3 times a week with no problems. After two weeks he came down with quite a nasty virus, but I continued to give the cashew. Lo and behold, a small red patch on his top lip. Now, he does come up with the occasional blotch, and I couldn't say for certain that this was a reaction, so I went really carefully the next time I gave it, a tiny bit at a time, and he reacted again with hives. Thankfully, because I was watching him, it only got as far as two spots, and I was able to give Pirition straight away. They disappeared almost instantly.

To say that I'm devastated for ds is an understatement. Having spent the last two years trying to adjust to the idea that we can't live with the freedom that we have always been used to, I had just about started to relax. We were planning a holiday - flying abroad, something I hadn't dared think about previously - and I was loving trips to the supermarket, buying all the stuff that we hadn't been able to before. I wish that this carrot had never been dangled in front of us, it would have been so much more bearable than being given some hope, then having it taken away again so quickly sad

I know I have to count my, and ds's, blessings. There's the fact that he could have more allergies, that he could be permanently and seriously ill with any number of conditions that would affect his quality of life to a far greater extent than this does, and also that we're very very lucky that he reacted so mildly to the cashew - the virus made him really poorly, and when I think how he might have reacted with his immune system so compromised, I know we probably got off lightly. That doesn't stop it being really, really shit though!

Anyway, a long post from me as usual, I could never be concise! I know we just have to suck it up, but I also know that you guys will understand where I'm coming from, and it does feel good to get it off my chest...I suppose I just have to hope that this means ds is on the way to outgrowing, and that we just need to be patient and sit it out. Thanks for reading if you got this far, anyone who would like to wallow with me is welcome to do so grin

Pancakeflipper Fri 22-Mar-13 17:56:57

That's pants. Do you think the virus has just shaken up his system ? Shall we do positive thinking in that it might rebuild itself again so he can eat them again without a reaction?

casabevron Fri 22-Mar-13 18:04:00

All positive thinking welcome, Pancakeflipper! That's my hope. Not sure whether it's naive or not though confused. I wonder whether we would have got away with it if he had the cashew in his system for longer before becoming ill. It's ironic that he is rarely properly ill - lots of colds, but he's only ever been this poorly once. He'll be retested around December, so I guess we just have to wait til then to see what happens.

Pancakeflipper Fri 22-Mar-13 18:11:12

It's hard when you think "yeahhhhh, we are advancing forwards!" then it's back down the snake on the snake and ladders board.

I positively think the virus had has affected his system and he will gradually rebuild whatever the virus knocked out. That is what will positively happen

casabevron Fri 22-Mar-13 18:13:18

Well, if you're positive, then I'll go with that theory!

Weta Fri 22-Mar-13 20:57:55

I'm doing lots of positive thinking on your behalf too smile

And don't feel bad about coming to have a wallow, allergies are tough to deal with, especially when you get your hopes up and then they are dashed - and this is a great place for a wallow!

Hopefully, as you say, he will be able to get back into the reintroduction once his immune system has built up again - and in the meantime, you've learned some useful info about pulling back a bit when he's ill.

You may remember me from when you were on here before, I think we had some contact then... we were doing a desensitisation programme and had a tough time two years ago with two hospitalisations in three months. It was really hard feeling like we were making progress and then having a horrible shock, but in our case we learned useful info about not taking milk within two hours of exercise. And you may have seen my post further down the page about reaching the end of the programme and DS1 being able to eat loads of previously forbidden food - so there can be light at the end of the tunnel even after having setbacks, do hang in there!

casabevron Fri 22-Mar-13 21:59:01

Hi Weta smile, yes I do remember you. What fantastic news about your ds - you and he must be over the moon at his new-found freedom! I don't think you realise what a burden you have been carrying around with you until it's removed, do you? I think that if I can take anything from this it's that I need to make sure that ds gets more of a life than I have been able to give him so far. It's been so lovely just being out and about without some of the usual worries, and I need to hang on to that and keep doing what we've been doing rather than retreat back into my shell.

I hope your ds is really proud of himself for going through the desensitisation, what he has done may well be of benefit to lots more allergic kids in the future. And ds is only 2, after all. It may be that all sorts of things are possible in years to come...<channels positivity>

OHforDUCKScake Sat 23-Mar-13 13:23:43

Would a cashew allergy really stop you going abroad?
What is his egg and cashew allergy stopping him doing (apart from eating egg and cashew).

Honestly, and I mean this lightly, gently, I think you need to get some perspective with your sons allergies.

Are you being light hearted and positive and upbeat on front of him?

casabevron Sat 23-Mar-13 13:56:02

Like I said, Ducks, I'm wallowing. Just for a moment there I saw a future for ds where I didn't have to worry about him when he went off to friends houses, on school trips, blah blah blah, you know what I'm talking about. Now it's gone again. I know that in the scheme of things we have it relatively easy, I have read enough of your posts in the past to know just how much more difficult things could be. I've just come through horrible pnd, anxiety, mild ocd, all as a result of ds's allergies. Things were looking a lot more positive. Now we're back to square one.

Ds is two, he doesn't understand yet that he has allergies, and when he is able to start taking that on board of course I will try to be as positive as possible with him. I don't wrap him in cotton wool, I take him out and about, although I do avoid those playgroups where there are hoardes of cake-wielding toddlers rampaging all over the place! I am starting to see that, no, I don't have to rule out air travel because he has a nut allergy, and that I have to give him as normal a life as possible - I don't want him to miss out. It's just pretty devastating to me that just as I was starting to believe that I wouldn't always have to think this way, the rug has been pulled out from under us again. It's all very recent, I will get over it, I just want to be able to come on here and moan about it please!

LehmanSisters Sat 23-Mar-13 14:12:56

Our 4year old DD is allergic to eggs and cows milk, as I'm sure you know avoiding egg is tricky because it is in all sorts of things you don't expect it to be, but we find avoiding milk is even harder. The milk allergy isn't too bad though she is pretty poorly afterwards, but the egg allergy is pretty nasty with alarming swelling/hives, though not anaphylactic thankfully.

We've been abroad, flown longhaul with her several times, it is do-able if you want to do it.
Get very good travel insurance, declare it as a pre-existing condition and pick your location carefully. We stick to English speaking countries because neither DH and I have a second language and I feel like I need to be able to converse with a doctor without the use of a phrase book.

On a plane you can take all your own food for them, they are fine with that. You could do self catering maybe, we have done both hotels and self catering. If we choose a hotel we contact them before we book to ensure that they can cater safely for him. Once we couldn't find a hotel that could safely cater so we bought in food to keep in our room for breakfast and always ate out for lunch/dinner, finding places nearby where they could cater for us.

I know it is a total bitch when your DC are limited by allergies, and a holiday is hard work compared to taking a non-allergic child but it really is worth it if you can manage it. The key is being brave and being prepared!

LehmanSisters Sat 23-Mar-13 14:23:10

This is the right place for a moan, absolutely, and I think we all have the right to a moan because none of us would have chosen this for our DC. But, this should also be the place where you see how much other parents with allergic DC manage to do for their DC, how many activities are manageable.

"although I do avoid those playgroups where there are hoardes of cake-wielding toddlers rampaging all over the place"

Is he anaphylactic? We manage toddler groups fine, the people who run it know what allergies she has and we agreed that they would tell me when cake will be served at the snack table so I can police her accordingly and be ready for a alternative she can have.

I hate to say it, because I don't know the severity of you DS's allergies, but I think you might want to consider trying to let him do more. We have had to learn how to work around kids birthday parties in soft play centres, going to friends for play dates and tea parties all sorts. Over the next 2-3 years his social life will develop and you need to start working out strategies for how you will manage it otherwise he will feel left out.
My DD feels left out at times because there are activities that she can't do (baking eggy cakes at preschool etc) but I make it my mission to ensure she can do everything she possibly can.

casabevron Sat 23-Mar-13 14:27:11

That's really helpful Lehman, thankyou! I think a lot of the worries I have/had about going abroad were centred around the actual flying part - I had never seen ds have a reaction as he was diagnosed by spt, and not knowing how severely he might react to traces of nuts was freaking me out somewhat! I know that reactions can be different each time, but having seen that it took quite a decent amount of nut before he reacted - and at a time when he was really poorly too - I am less freaked by that aspect of it now tbh. I think self-catering would be the way to go, I haven't been very brave about eating out over here yet, never mind abroad...We have had holidays in the UK with no problems, but I'd just love a bit of guaranteed sun for a change!

Thumbwitch Sat 23-Mar-13 14:30:23

I agree that it's quite likely the virus has triggered his immune system to become over-sensitive again, and that if you leave it for a while, it may settle back down.

I am also a little at a loss as to why cashews would impact so much on your freedom to travel etc., unless you were planning to go to countries that use cashews in all their food?
I would have thought the egg was far more of an issue, tbh.

Unless you were hoping that the cashew allergy disappearing was a sign that the egg one might disappear at some point too?

Thumbwitch Sat 23-Mar-13 14:33:21

Xposted - but i still think you'd generally be fine, cashews aren't that common an ingredient, I don't think. Agree with going self-catering though; although BA do have a big list of meal choices I don't think egg-free is one of them, sadly. I know they do dairy free, gluten free, low fat, low sugar (for diabetics) but can't remember seeing egg-free. Everything is peanut free as a matter of course now (on BA at least), iirc - but I don't know about other nuts or cashews.

casabevron Sat 23-Mar-13 14:41:28

Cross-posted with you, sorry. What you say makes absolute sense, of course. The play-group I mentioned is literally about fifty toddlers let loose in a church hall with no designated area or time for eating, just a table serving cakes etc, and said toddlers then squishing the cake into every available nook and cranny!! Ds has a tendency to try to taste anything and everything he finds on the floor, not good for my nerves in these sorts of environment!

Again, I have never seen ds have a 'proper' reaction to egg, he got raw egg white on his skin as a baby, and came out instantly in hives where it touched. His eye watered where he rubbed some into it, and his nose was running too. Because we had that early experience, we were lucky enough to be able to avoid all the foods we knew would cause problems. However, his latest spts were 13mm and 14mm to raw and baked egg, and any hospital-related person we have seen does the raised-eyebrow-and-shocked-whistle type expression when they see these results, which doesn't make me want to take any chances! (Strangely, his bloods were 8.9 the first time he was tested, but are now something like 0.49, which I dont understand at all given the big skin results confused)

I do know that you and Ducks mean well, really I do. Luckily i have a circle of friends from when dd was born who know what we've gone through this time and we spend a lot of time socialising with them. I honestly don't keep him under lock and key! But it will be my mission in the future to do more, and to allow him to have as full a life as possible, allergies or not.

LehmanSisters Sat 23-Mar-13 15:37:14

Our DDs egg allergy sounds very similar, she had terrible reaction to touching it when she was about 7 months old. She has only ever eaten it by accident if I slip up and give her something that I haven't properly checked lemon curd

I worry about what her reaction would be if she actually ate egg because just her skin coming into contact with egg brings her out in the most awful welts and hives. They haven't given us an epi pen though, which I choose to see as a good sign. We keep going back for bloods, hoping that she will be growing out of it and no sign of that yet but continue to be hopeful.

We haven't really found anything that she can't do yet, the only thing I can think of is baking with preschool but they try to provide an alternative for her whenever they can.

The milk allergy is less severe but we have reactions to more often because it is so much harder to avoid, milk, cheese, butter, whey powder seems to be in everything.

Like I said, travel is nerve wracking but once you have done it once then you feel better about it. We eat out lots too, we mainly stick to chain restaurants and a few local, trusted places. In a strange town we always head to the same chain restaurants because we have sussed out what she can/can't have in those so we can eat with some piece of mind. The more you do it though, the more manageable it all seems.

eragon Sat 23-Mar-13 15:42:37

you are allowed to wallow a bit. we do need to do that sometimes. then take a deep breath and carry on.

you need a big hug really.

casabevron Sat 23-Mar-13 20:05:43

Thanks all of you, I am really grateful for your input and advice. Lehman, whenever we go to the hospital they talk in terms of when he outgrows the egg allergy, rather than if, and they have told me to expect that ds may be as old as seven before he completely outgrows it, so I guess there is hope...

All hugs gratefully received, eragon - a gin and tonic and a full night's sleep wouldn't go amiss either, if anyone can oblige grin

OHforDUCKScake Sat 23-Mar-13 21:39:07

We have the same casa, 12mm SPT results, very low blood results (1.3) and never eaten egg (baked a cake when he was a few months old, got the raw mix on his leg, lots of hives.) I assume hes as allergic to (raw) egg as he is to milk (anaphylactic) because I dont know for sure.

I too avoid foody play groups, but thats because of the milk allergy rather than the egg. We go to lots of groups though, I live in a tiny little town and there's still lots of other groups.

We go to a toy library, they have biscuits but no cake. We go to a toddler gym class (think tumbletots but not as expensive) they have no food, and a music group which also have no food. There's other play groups too but 3 days a week is enough for us.

My son is allergic to over 20 foods, some very serious but we still holiday (albeit Butlins - VERY good for catering for allergies) and eat out.

I personally would be changing very, very little, if anything about my sons life if he had an egg and minor cashew nut allergy.

It definitely is a place to let off steam for sure! I would never suggest it wasnt, but Id do anything anything for my son to be as 'well' (for want of a better word!) as yours was.

Sometimes as well as having a good moan, its healthy to take a step back and see how lucky we are. To be thankful of what we do have and not dwell on what we dont.

Good luck with it all. smile

LehmanSisters Sat 23-Mar-13 22:35:00

Casa Thats interesting about them talking about 'when' he outgrows it rather than 'if'. Our paediatrician and the allergy dietician we see every 6 months only ever talk about 'if'.
They said to be hopeful because egg is one of the allergies that is most often outgrown but that there is no way of knowing whose allergies will go and whose will stay.
We keep hoping that they will say that the results are low enough that they will let us do a food challenge but no luck yet, we are back there next month so fingers crossed for this time!

We have learnt to be as relaxed as we can be, I don't want her to feel left out. I know she understands she is different, she understands that there are things that she can't eat because they will make her ill but because she only has two allergies and they are manageable then she shouldn't miss out on anything.
I spend a lot of time calling ahead places to find out what food will be there, making sure that the preschool Christmas party will have something in the Santa sack that I can take in wrapped up beforehand so she gets something from Santa just like the others etc.

Every time we have a kids birthday party to go to I have to speak to the mum or the soft play centre or wherever to find out if she can be catered for, if not we take our own. If they say they are doing pizza for the kids, I make sure she has a pizza (cheeseless) in her lunch box that she can have so she is eating as much the same as she can. I bake cakes so that when the others are having birthday cake she also has some cake, it does take a lot of effort.

One of the best things I did was start very early, as soon as she could talk really, explaining that this or that has egg/milk in it. Now when she is at preschool or at a toddler group she knows to ask if food is safe for her. I feel a bit safer knowing that when so-and-so's mummy offers her some chocolate she says 'is it cows milk chocolate or special chocolate that I can have?' I feel like her starting to police what she eats herself is really important before she starts reception class and it is second nature to her now.

Good luck, I hope you start to feel more on top of it and be brave if you can!

Weta Mon 25-Mar-13 11:48:48

As you say, it's when the pressure comes off that you realise just how hard it was - so I can well imagine how horrible it is to make progress and then feel like you're being pulled back into all the restrictions.

But I do agree with the others that you can probably find some middle ground and allow yourselves a bit more freedom. My DS only had the dairy allergy but was anaphylactic. We restricted ourselves quite a bit because the doctors advised us not to let him eat any food prepared by anyone else (outside UK so little allergy awareness). But even within that we would do self-catering holidays and also travelled back to NZ/Australia several times. DS always took his own food to parties and playdates, with a few exceptions where the mum was a close friend of mine - but he never missed out on a playdate, party, school trip or anything.

Can I add something else to reassure you? although the restrictions etc are difficult, I think it was less distressing for my son than for me. Looking back, I think I probably took the distress on myself by being the one to worry about it etc - and in a way that seems right. I'm glad I could spare him a lot of worry by dealing with it myself and making the necessary arrangements for him to participate in activities while still being safe.

He's now 9 and he was recently asked to write an account of his experiences for a book being produced by the hospital about children with chronic/serious conditions. To my surprise, the fact of being different to other children barely seemed to affect him and his main concern was not being able to eat ice cream and pizza. Not to minimise how hard it has been for him, but that side of it wasn't a big issue somehow, which made me feel good that I had managed to get us through it ok in the end.

Good luck, you will work it out one way or another however it pans out.

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