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CasaBevron again - it's official, DS will be breastfed for the rest of his life :(

(28 Posts)
CasaBevron Sun 18-Sep-11 18:36:01

Me again. For anyone who didn't manage to plough through my last thread, DS RAST-tested, allergic to egg and wheat. Also reacts to banana, apple, cashews (through breastmilk) and sweet potato (fed directly to him). Always the same reaction - one hive somewhere on his head. Have seen them on the back of his neck, cheeks or forehead. They always go away within half an hour without Piriton. He also has terrible stomach pains and green mucousy nappies whenever I eat nightshade veg. The only thing I have fed him so far without a reaction is baby rice, so I have been upping the amount I give and feeding him twice a day with it. So far I have always expressed breastmilk into it.

Yesterday DS started with a cold. He's been feeding more often so tonight, rather than express milk, which would have taken ages, I just made up the rice with cooled boiled water. The instant I put the spoon into his mouth, he made a 'what on earth is this?' face and a hive appeared on his forehead. No crying, itching etc but a definite hive. I managed to get a spoon of Piriton into him and it disappeared within ten minutes, so definitely a histamine response to something. So now he's either started to react to baby rice too, or he's allergic to water???

I just feel at the end of my tether now. I know the reactions he has are nothing like as scary as they could be, but it feels as though he's going to react to everything i put in his mouth! I daren't give him anything else to eat now. I'll try him again on baby rice with breastmilk in the morning and see what happens. At least then I can work out what might be causing it this time. I'm really worried that this is the tip of a big scary iceberg and that the reactions are only likely to get worse and more frequent.

We are seeing Adam Fox in approx 4 weeks time, so I suppose if anyone can get to the bottom of this, he can. I spoke to the specialist nurse at our local allergy unit last week, who said that in ten years of working with kids with allergies she'd never heard of anything like this confused. I'm not even sure why I'm posting this really, I just need to offload somewhere. I imagine that those of you whose kids have had life-threatening reactions to food will be starting to tire of me whining on about DS's. I just feel so lost with all this, I no longer trust my instinct as a mother and I can't separate out what might just be normal baby behaviour from the potential effects of what he and I are eating sad.

One of these days I'm going to write a short, concise post! Hope I haven't depressed you too much if you made it to the end. I'm not really expecting answers, just helps to get it off my chest.

ilovemydogandMrObama Sun 18-Sep-11 18:40:23

what was in the cup before? Any possibility that was the allergen?

CasaBevron Sun 18-Sep-11 19:18:43

That did cross my mind, ilove but everything came straight from the dishwasher.

piprabbit Sun 18-Sep-11 19:21:56

Residue from the dishwasher?

Sounds horrendous for you both.

Weta Sun 18-Sep-11 20:46:01

I don't have any suggestions I'm afraid but just wanted to express my sympathy. And to say don't think any of us will be unsympathetic - this board is such a great source of support for all kinds of allergies.

Plus not knowing what's going on is a huge stress even if the reactions themselves are not life-threatening. I think the hardest thing is when you think you know what's happening and then suddenly the rug is pulled out from under you and it's all up in the air again.

Hang in there somehow for the next 4 weeks and I hope the specialist can figure it out for you. Let us know how it goes...

nellymoo Sun 18-Sep-11 22:24:04

It is possible to have an allergic reaction to virus', you say he has a cold? Is this a new cold, or has he been under the weather lately?

nellymoo Sun 18-Sep-11 22:28:58

And, for what it is worth, those of us with children with life-threatening allergies have all been where you are, at the beginning of what feels like the most terrifying journey in the world. It is all the "what-ifs" that frighten us, and you are not exempt from this, so please don't feel bad about posting here. As Weta says, we can all sympathise and this place is a great source of support. We all just want our children to be safe.

youarekidding Sun 18-Sep-11 22:38:03

Another who says never feel silly/bad for posting here. My DS went through the reacting to thin air everything and negative RASTS so we really were up in the air. If it wasn't for MN allergy boards and all the lovely ladies here I would have gone mad.

Hope it all gets sorted at the specialists.

CasaBevron Mon 19-Sep-11 08:47:26

Thanks guys, I felt so low with all this last night. We had relatives here when I gave him the baby rice and the hive appeared. When I pointed it out, the response was 'well it must have been there already' and 'it can't be the food, it must be something else'. Why can't anyone else but me see how serious this could be for DS instead of dismissing it? My mum says that when we were kids they would have just put it down to 'milk rash' and carried on feeding. This just makes me feel paranoid and over-protective.

I love food, I love shopping for it and I love cooking for my family. Food is a major part of my life, more than just something we need to survive. Now it feels as though all the joy has been sucked out of eating, I am afraid of the bloody stuff and I won't be able to pass my passion on to DS. Instead he'll end up with me trailing round behind him everywhere he goes, panicking every time he's out of my sight sad

Have been thinking about the link with viruses but he has reacted at times when he has been fine. The hive always appears the instant he is fed, either directly or by me. Too much of a coincidence for it to be anything else, I think. I just can't believe he can be allergic to everything that goes in his mouth hmm.

trixymalixy Mon 19-Sep-11 08:54:02

Did anyone kiss the baby? DS used to react if someone had had a cup of tea recently and then kissed him. He also used to react in coffee shops to the steamed milk in the air or even sitting beside a child drinking a cup of milk.

It must be very stressful for you and please don't apologise for posting on here, this is what the board is for and we have all been there!!

Weta Mon 19-Sep-11 10:26:56

Can I just say, try not to project too far into the future... at the moment you just have to get through the next few weeks till you see the specialist, and at the moment your DS doesn't need a vast variety of food (I assume - not sure how old he is!).

It won't be helping you to think things like you'll have to breastfeed forever (though I relate to this well, I remember thinking exactly the same thing and did have to carry on an extra few months than I had intended) or that you won't be able to pass your passion for food on to your DS.

One way or another I'm sure you will get more info about what is going on eventually and you will then be able to process that and work out how to handle it. I really think the worst stage is when you don't know what is gonig on as you can't deal with it until you do.

Our situation is different (just one life-threatening allergy to dairy although he was previously allergic to eggs as well - he's nearly 8) but I do relate to food being a big scary issue. But in a strange way it has given an extra motivation to pass on a passion for food... he loves food and is really interested in baking and cooking, and of course we have to do so much more of it from scratch that I have involved him from a young age (about 2) as it was the only way I could fit everything in. Also I am conscious that as an adult he will need to be competent to prepare his own food. I do find it hard that he can't enjoy restaurants in the normal way, but you should see the excitement whenever we locate a vegan restaurant smile

Hang in there!

CasaBevron Mon 19-Sep-11 11:44:33

I know you're right Weta, I'm trying to live day to day and not concentrate too much on the 'what if's' at the moment, but there are so many questions in my head at the moment. For example, if DS is now reacting to baby rice is it because he's had too much of it and do I risk making him allergic to more stuff by continuing to bf on such a limited diet? If I think he's reacting to cashews do i need to avoid all 'may contain nuts' products myself?? Would I actually be doing him less harm by switching to formula? It's not so much the extended bfing that bothers me, just the fact that I don't seem to be able to give him anything else alongside it, or introduce anything new into my diet!

DS was admitted to hospital at 5 weeks with suspected meningitis and given strong antibiotics for 4 days. I worry that this stripped his gut and made him vulnerable to all these allergies. I have a dreadful feeling in the pit of my stomach that this was something I could have avoided if only I'd known the potential effects of AB's on such a tiny baby and tried to mitigate those effects. I don't even know if his gut should have recovered by now, or whether it's worth trying a probiotic to help him heal? Have I even understood this right?

I know four weeks is a short time in the scheme of things, but it feels as though new problems are emerging all the time, and I could potentially be doing him more harm in the meantime sad.

SoupDragon Mon 19-Sep-11 11:48:02

Is there something in the spoon itself that he could be reacting to?

Weta Mon 19-Sep-11 11:50:22

I know, it's impossible to stop those kinds of questions going round and round. BUT you have to hold on to the hope that the specialist will be able to shed some light and give you advice. In the meantime I guess you just have to do whatever feels most right to you, and any hives that do appear will provide more information to give the specialist.

You also have to try not to blame yourself - what else would you have done with suspected meningitis than give antibiotics?! at that time you made the best decision with the info you had available, and that's all you can do.

I've been there too - DS1 had five days of antibiotics at birth and was also given a small amount of formula when he was in the incubator because he wouldn't feed with me and wouldn't stop crying - I subsequently learned that this may have made him more susceptible to allergy.

I don't know about probiotics, but other people may have more info about that...

mintyneb Mon 19-Sep-11 12:33:39

as weta says, don't beat yourself up about what has happened in the past. Due to a chronic health condition my 4.5 yo DD has taken antibiotics every day of her life since the day she was born and will continue to do so for some time to come. I hear all the time about the dangers and side effects of long term use of antibiotics but would I put her health at risk but going against the advice given by her expert team of health professionals - no. Just as you followed the doctors advice when your DS was admitted.

DD has a severe (anaphylactic) allergy to milk which seems to be getting worse rather than better and I keep having to follow my own advice and that is not to think too far into the future to potential summer days out when all her friends are tucking into icecreams from an icecream van; to all the those parties when dairy laiden treats are on offer; to Easter where chocolate is given out willy nilly. Instead I try and deal with each week as it comes. She has just started school which throws up a whole new set of problems and whilst it has been upsetting seeing children giving out chocolates at the end of the day as its been their birthdays, I can reassure myself that by me being proactive the teacher has a stash of dairy free chocolate buttons to give her and so of course she is as happy as Larry!

I am wracking my brains to think of what could be upsetting your DS but short of the obvious suggestions of a reaction to washing powder, or nipple cream (if you were using it that is) or people kissing him I'm a bit lost. Hang on in there, from all accounts you are going to see the best consultant in the country and you can start your new journey from there. I would use the next few weeks to keep a food diary (I think you may be doing that already) and taking photos of the reactions and recording how quickly they appear. I would also keep a 'poo diary' recording type and frequency of poo and that way you will be giving the consultant valuable information to help him.

good luck, you will get answers soon

garliclover Mon 19-Sep-11 13:13:51

CasaBevron, you're doing a brilliant job. First of all, you acted on your instincts and got your DS tested for allergies -- your instincts seem to have been proved right (I say 'seemed' only because of the caveats surrounding reliability of RAST tests on babies). Then you got an appointment with one of the best specialists in the country. You have observed your DS keenly and been very thorough about the whole thing. You should be proud, and not sorry about the past. I know that pit-in-the-stomach feeling so well. I have no medical basis for my theory, but when I was 7 months pregnant I got pneumonia and septicaemia and had loads of antibiotics. Then had pre-eclampsia and an emergency c-section: more antibiotics. Then mastitis: yet more. I feel wretched and guilty about all of these, despite knowing that I could have done nothing to avoid them. But I'm convinced that's why my DS became allergic. He also had an awful thrush infection: probiotics finally got rid of the intestinal infection, so I do think they have their uses. I've also read somewhere that probiotics can help with eczema (Dr Sears, maybe?). Anyway, I haven't given any to DS since then, because I'm just not sure about them. They apparently do no harm, but I'm wary about 'out of the ordinary' supplements.

Why not give yourself a break of two or three days where you don't offer your DS any new food, or try anything new yourself. Observe what happens, and meanwhile read up on allergies. Maybe after a few days you'll feel more confident about giving your DS another food.

And stay away from those who say you're overreacting! That's one of the worst things about allergies: people just don't get it.

CasaBevron Mon 19-Sep-11 14:33:12

You're all so kind, thanks so much for taking the time to reply. When I read about what you've all got to deal with, it does put DS's situation into perspective. Thanks too for some good advice. I am keeping a food diary and will start to log (no pun intended hmm) DS's poos too.

I said to DH last night, this is the sort of thing that you go through life thinking would never happen to you or your family, then when it does you enter a whole alternative universe that you had no idea existed before. No wonder there is so little awareness or understanding of allergies amongst the population in general, it is just such an incomprehensible situation until you actually start having to deal with it. I swore this time round - after being ridiculously pfb with DD - I would be so relaxed. Well that's gone out of the window big time!!

eragon Mon 19-Sep-11 15:05:40

well, as least you are going to see a good doc, adam should sort you out!

of course hives do just happen with allergic people, my son used to have odd hives all the time, turns out in the end, along with food allergies, he had all the environmental ones as well.

allergies just dont come in ones.

let us know how you got on with the doc, 4 weeks may seem a long time, but when we first got referred we waited for 8 months, feeling lucky it wasnt the 18 months we were first told!

eskimomama Mon 19-Sep-11 15:45:44

Just my 2 cents after all the good things the other moms have said above - I never took any antibiotics while pregnant and my DD never had any either and still she is very allergic to milk, eggs, almonds and hazelnuts... so don't beat yourself up with the antibiotics, it was just for a short time anyway, and that was the right thing to do at the time.

About your passion for food - it actually made me and DH even better cooks! We've discovered a fantastic world of allergen free cooking and we really enjoy it, even more than before. We're trying to involve DD (she's just 2) but so far she just enjoys throwing the raw veg in the pan - it's fun smile

An idea - I was thinking maybe your DS is having small reactions to all these common things as his immune system is very immature? It's not uncommon to have hives at this age (DD had skin reactions to kiwi and wipes at the same age and she's not allergic to them), and doesn't mean he is allergic to these things at all. It actually sounds very positive that it never became worse than that!!

Prepare a list of questions for Dr Fox, it's easy to forget once you are there. I was in the exact same seat in April 2010 and thought my life had been turned upside down and had 3 million questions in my head. Nowadays I think it's really not that bad, once you know the exact allergies you will see that things are MUCH easier to handle, because you know exactly what to avoid.

Come back to this forum and ask away if you need anything!

SoupDragon Mon 19-Sep-11 18:03:32

do the weaning spoons contain any latex? Isn't that commonly linked to many food allergies?

CasaBevron Mon 19-Sep-11 19:35:05

SoupDragon, sorry I wasn't ignoring you blush. That did occur to me but the reaction to sweet potato was off the end of my (clean!) finger, and all the others except for yesterday's were from being breastfed so the spoons are not a common factor in the times he has reacted IYSWIM?

Eskimomama I live in hope that your theory is proved true. It seems like such a random bunch of things to react to. I mean, I know that you can be allergic to anything, but to be allergic to so many relatively rare things seems really odd. It would make sense that he does not react to rice mixed with breastmilk because he is used to it (I am living off rice and wheat-free pasta) but when it is mixed with water it would become a 'new' thing and trigger a small immune response. Does that make sense?? <<clutching at straws>>

Eragon it really shocks me that babies and children could be left for up to 18 months without any support! We are so lucky that we can - just about - afford to get help privately, I can't imagine what I would do if I had to wait 8 months to be seen. And it hardly looks likely to get any better under the con-dems...

eskimomama Tue 20-Sep-11 17:52:58

if that can appease you a bit - water wouldn't trigger anything new, actually when allergens such as egg/dairy are cooked they are usually less potent.
I'd say as long as it's only a few hives keep going with the weaning, have you tried carrot, courgette/similar easy veg and fruit and other gluten free cereal (millet for instance)? Keep us updated!

piprabbit Tue 20-Sep-11 19:09:41

Could it be something in your shower gel or body moisturiser?

eragon Tue 20-Sep-11 21:40:57

my son is 15 now, and the current waiting time for london allergy clinics is 8-10 weeks, which is far better.

the rice water thingy wouldnt be the problem, its the protien in foods that cause the problem.

so i suspect that when you see yr doc he will go over history and suggest food and environmental allergy testing.

my son got hives all the time, well from a selection of causes, he got facial hives sitting in his high chair, but the hives were on one side of his face, near the open window, during spring.

hives from jumping on beds, sofas, or from running naked, out in the garden when he was 2 1/2 yrs running under the trees.

dogs and cats caused hives, etc.

he also has food allergies, and the environmental ones. that seems to be the norm for allergic kids.

lukewarmmama Wed 21-Sep-11 14:37:27

It is possible to be allergic to tap water unfortunately. A child at DD's nursery has to drink Evian instead. Must be the chlorine or other chemicals in it maybe? Put my DD's allergies in context quickly! ('only' dairy, eggs, lentils)

However, if you've only just started weaning, then yes, it is entirely possible that your DS has an immature system, and many of these things will resolve themselves. Doesn't help you in the meantime of course, but at least you are getting decent help with this. Good luck.

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