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Parents of kids with allergies


onetrick

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So I guess I was fairly ignorant about the process before being diagnosed with an allergy.

I've done the anaphylaxis training (need to donit every year) and have supported students when having reactions.

But with my own kid? Wow, its tough. And we haven't had an ana reaction so I know we are comparatively lucky.

So far my boy is non ige to dairy, soy, egg and sesame. Started investigating due to very low weight, chronic eczema and mucous poo.

But we were doing the vitality study through RCH (pure coincidence) and there is an SPT at the end of the trial... and it was positive to egg white. We weren't expecting that.

Then a few days ago, he had an allergic reaction to... something.

This is the part I hate. The guessing game. He is 1yo and I'm still breastfeeding so its 'what did I eat what did he eat?'... and its exhausting. We tried step one of the allergy ladder and that was a massive fail as well. So its just been a shit week (yay holidays...).

I'm not sure what I'm after, possibly just some light at the end of the tunnel from people who have been there? Any tips/ tricks? I feel like I'm drowning here.

I know it could be worse. Much worse. So I'm not looking for sympathy, just someone who understands? The fb groups are intense and a little preachy so i thought I'd try here :)

Thanks in advance x

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Allergies suck. My DS is 21 now, when he was a baby, infant, small child he was always sick. He had blood tests and the doctor said he will be an allergy child due to the response of the blood test.

When he was about 2 his whole body came out in hives and his skin turned blue due to the swelling and bruising. After two doctor visits who just said it's an allergy my sister in law took me and DS to the hospital and they gave him steroids and finally he had relief.

Roll on many many years in a different state (we moved at the same time as the reaction) his allergies came thick and fast, it got to the point where his eyes would swelled shut. Finally doctors took it seriously and we were fast tracked to the allergy clinic at our local hospital. This is when we found out he had multiple allergies.

We started on immunotherapy which was amazing for him (a life of eczema disappeared) but then on one visit to the GP for his shots he text me, I don't feel right (he was in high school by then and caught the bus to the GP and I picked him up on the way home. I told him to tell the nurse and I raced there.

By the time I got there he was clawing at his throat (visible scratch marks) as he was still in the waiting area and they took him straight in to the treating room, lifted up his shirt to see hives all over him, he was struggling to breath and move. We got him to the bed, he could hardly breath and the nurse got a doctor and adrenalin at the same time. They gave him the needle and I swear less than 30 seconds he was back to normal.

Immunotherapy started from scratch again, he did it for just under the recommended time as getting his immunotherapy medication got harder (specially made for him overseas) as the company stopped making it. That was about 10 years ago and sadly this last week his eyes have started to swell again, there is something in the air. They do say immunotherapy isn't life long :(


My DD is 18 and just under a year ago was diagnosed coeliac :( no immunotherapy can help her :(

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Fruitmincepies

DD is almost 7yo. She was diagnosed with egg and peanut allergies when she was 7 or so months old. I stopped eating them (she was still predominantly breast fed) and her eczema disappeared. We did a baked egg challenge in outpatients, she passed, so I then had to feed her baked egg every day (I made and froze mini muffins). She is no longer allergic to eggs or peanuts but she refuses to eat either. I get her to lick the cake mix bowl regularly so I know she’s still ok with egg.


She is now allergic to walnuts, pecans, hazelnuts, and coconut. The first reaction she had to coconut was bad and took me by surprise - we had had an easy time managing things until then. We lived around the corner from the children’s hospital so I drove her there, but got told off big time for not calling an ambulance. She was fine but they gave her a very good reminder about how to use epipen, she found it empowering.


Anyway, I spent 20 minutes yesterday standing in the lolly aisle at coles reading labels, as coconut oil gets put in some lollies and we don’t know if she reacts to it or not. I suspect not but as the lollies were for eating away from me I was taking no chances.


Anyway, when she was first diagnosed I was terrified that food was trying to kill my baby. It’s been ok for the last few years as DD doesn’t like trying new foods (although we can’t tell when a new allergy will pop up), but now she is going to friend’s houses, to holiday activities etc, I’m more worried again. I send her with food (and lollies if I know there will be some) and her epipen and cross my fingers.

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Oh yes, the worst bit for me is trying to balance getting DD to be aware of food and her condition (coeliacs) without instilling food anxiety (as she is anxious and has sensory stuff with food already).


I had to push and push and eventually change GP to get the coeliacs blood test. Then I had to keep feeding her gluten even though I knew she had coeliacs (her blood tests were like 10 times over the normal level), until we had a scope to confirm, and felt like I was poisoning her....

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We just can't figure out this latest one, or if it even IS an allergy.

He kept breakfast down (weet box and oat milk) but vomited up lunch (banana smoothie with oat milk- tried a few other things but this was the only thing that he actually ate... cause he is 1yo and fussy).

And he did a massive vomit last night after I posted the OP.

I'm worried that its something that I've eaten that is still somehow in my milk?


I said to DH- allergies are weird as we (the patient/ patients parents) turn into the doctors. Other illnesses, you go to doctors, they join the dots and give a diagnosis. Allergies- WE need to join the dots, form hypotheses, try it all out and see how we go. Then tell the specialist how we went. Its exhausting for me, let alone my boy :(


Thank you for sharing your experiences. I do appreciate feeling less alone xx

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Princess Peach

It may be an intolerance instead of a full blown allergy, so you/he can eat a small amount but that is all. It’s even harder that allergies to figure those out because they won’t necessarily show up in RAST tests.

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Yup, I think its an intolerance. Sorry, the allergist uses the terms interchangeably and I've started doing the same.

We think egg is an allergy as even the smallest amount leads to an immediate reaction and the others are intolerances at the moment.

Apologies if I've offended anyone (like when my mum calls a headache a migraine?). I don't think they are the same and should have been more careful.

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Mine had cows milk and soy protein allergy. Acid reflux, eczema, poops gone mucousy with blood if I so much as ate 1 spoonful of dairy or soy. It used to take a week or so to go away (after I stop eating it) so I went off dairy and soy for about 15 months but kept eating all the other allergens as there was no reaction funnily. I breastfed for 3 years. The dairy and soy allergy had gone by then but the rest are still present unfortunately. 

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Princess Peach

Yup, I think its an intolerance. Sorry, the allergist uses the terms interchangeably and I've started doing the same.

We think egg is an allergy as even the smallest amount leads to an immediate reaction and the others are intolerances at the moment.

Apologies if I've offended anyone (like when my mum calls a headache a migraine?). I don't think they are the same and should have been more careful.

 

No offence here, I’m not even sure how you can tell the difference without a RAST test - hopefully someone more experienced can help there.


It’s just another thing to add to the minefield you are treading.

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Like anything, it is so overwhelming when you have a new diagnosis. I have a kid with allergies and one with coeliacs, so we have had our fair share of having to radically change our diets.


I took my kid to the allergy specialist as 13 months expecting to be told he had a slight allergy to egg. I came out discovering he was allergic to egg, nuts, soy, a slight dairy allergy and was given a script for an epipen. I was breastfeeding, so had to change my diet too. And soy was in chocolate, so had to give that up.


I must admit, the doctor just did the tests (whatever you call the one where they dot the allergy on your arm and cut it with a razor blade) and told us what he was allergic to. Our allergy doctor told me I could not eat anything my kid was allergic to whilst breastfeeding, so it probably is hard to work out who the problem food is with. Do you have anyone helping you with all this? When I was overwhelmed with my child’s coeliacs and ongoing issues, our dietician was really helpful and out my child on a low fodmap diet (quite restrictive) and it was so good to have someone else helping me out who knew that they were doing.

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Fruitmincepies

Interesting [mention]Prancer[/mention] - DD’s specialist told me there was no reason to cut things out of my diet. This didn’t make sense to me, as DD reacted to her first taste of egg, which meant she had to have already become sensitised to the protein, and surely the only place she would have come across it would have been breastmilk (she only had BM and had only a few fruit and vegetable purées at that point - she was not keen on food at all). So I stopped eating her allergens as an experiment, and her eczema disappeared like magic! The specialist remained skeptical (she’s not my favourite).

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Ooohh that’s concerning about the specialist [mention]Fruitmincepies[/mention] ! It’s well established that ‘bits’ of all kinds of environmental exposures breastfeeding women have (including food) wind up in breastmilk.

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Interesting @Prancer - DD’s specialist told me there was no reason to cut things out of my diet. This didn’t make sense to me, as DD reacted to her first taste of egg, which meant she had to have already become sensitised to the protein, and surely the only place she would have come across it would have been breastmilk (she only had BM and had only a few fruit and vegetable purées at that point - she was not keen on food at all). So I stopped eating her allergens as an experiment, and her eczema disappeared like magic! The specialist remained skeptical (she’s not my favourite).

 

It was 11 years ago that I saw the Allergy specialist, so things may have changed. I obviously do not bf my child still now, so not something that I talk about in current visits! What sort of specialist do you see? It is really hard to find them where I live. The original one I saw was a specific paed allergy doctor but he then retired. We then saw an immunologist who since had lots of babies! Most others that I know just see doctors with an interest in the area rather than full qualifications and even the dr at the public hospital (when the one having all the babies also works)

Does not seem to be as qualified as the first one we saw! So I think it is a mixed bag with who you get.

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Fruitmincepies

[mention]Lou-bags[/mention] i find her really dismissive sometimes and she was very unhelpful when DD became terrified of skin prick tests (and doctors in general in the end). We need to go back and get the coconut allergy confirmed by spt but I’ve been putting it off for ages.


[mention]Prancer[/mention] shes a paed allergist who we see privately but also works at the children’s hospital. It takes ages to get in to see someone, which is what has put me off changing specialist.

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It is very, very tough - particularly at the start.

At that age we found banana, avocado, and panadol also set them off (pain and nappies). The specialist said it was more likely to be traces of their known allergens slipping though as those aren't proven to cause those reactions. A few years later mine still has the same reaction to banana and have added antibiotics to the list. We are very lucky that none of theirs are life threatening.

The mental load gets easier, or at least you get used to it.

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It might be worth checking the calcium levels in the oat milk. We were told often only a few brands of soy, almond or rice milk had enough added calcium (300mg/250ml) a few years back. I wish we started with rice milk not almond milk as daycare is nut product free.

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We started this journey when DS was 4 months old and he is now 12 months. I have definitely been told to cut everything from my diet as well- its so hard! DS can tolerate when I eat things with soy in it (like bread) but cannot tolerate it himself. I would love to wean him (or ideally, reduce the feeds to 2 a day like DS1 was on at this age...).

I was seeing a private allergist who suggested that we go public as DS fit the criteria and we would be prioritised. So we did and have been seeing a lovely allergist at the RCH.

The worst reaction that we saw was when he was about 3 months old and I had noodle box- egg noodles with honey soy chicken. He has since reacted to any time i have had anything with a trace of egg- biscuits, bread (someone brought brioche to Christmas day and I had a roll not realising...). SPT was positive for egg white, but he has other non IGE allergies as well and we assumed egg was as well. It still might be.

I think it might have been the antibiotics I was on (for mastitis, as he bit me when he was sick and it got infected- if anyone ever says bf is easy....) because of the timing.

But who knows? I have a food diary, but he is 1yo and puts everything in his mouth, so its full of 'had one bite of crumpet, attempted to give banana...' as well as things he actually ate. Plus my food (luckily, I eat a fairly boring diet).

We will get there.

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tinselfoil hat

I hear you all. I don’t pretend to know how hard it would be with some of the more complex and serious allergies.


We’ve just started our 1 month old on neocate. She seems to be following the same path as her big sister who had intolerances as a baby and is now either intolerant to gluten or a coeliac (we couldn’t get the scope done and have now decided to wait until she’s older to do it). The poor baby is covered in a rash, so uncomfortable day and night. I hope the neocate fixes things for her. It’s awful to watch!

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