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Quick question for anyone who sees specialists/specialist nurses please!

(33 Posts)
CasaBevron Wed 07-Sep-11 11:18:07

DS has recently been diagnosed as allergic to egg and wheat through RAST testing. He is just 6 months and was referred urgently to the local Paediatric Allergy Unit by my GP. (I pushed for this, as I am certain that there will be more to add to the list, and I think the GP was just desperate to get me off his back!)

Having tried for a fortnight to contact the hospital after attempting to make an appointment through Choose and Book (don't start me on the uselessness of that system!) I finally managed to get hold of the specialist nurse and was told that as DS is not allergic to milk, and therefore not failure to thrive, he won't be seen until January hmm. I am not prepared to wait this long, and am considering trying to get a private appointment in the meantime.

The specialist nurse gave me some information that I have seen contradicted on here - not just as opinion but as fact that some of you have been told by specialists - ie exzema is categorically not linked to what you eat, they do not RAST test babies as the information gained is likely to be inaccurate (she advised me to reintroduce wheat into my diet as DS's score was 'insignificant' and lo and behold after one slice of toast he reacted with a hive on his face when I fed him 4 hours later). There's more but I won't bore you with it.

My question is, is the nurse repeating information that she has been given by the actual specialists at the unit? It seems to make sense to me that the nurse would be on the same page as the specialist doctors, but if this is the case I don't want to be paying privately to see someone who will not necessarily give me the best advice. It seems that the 6 to 12 month stage is such a vital one in treating allergies and preventing further ones developing, that I want to make the right choice for my son. Is there anyone with more experience than me that can advise? I'd be grateful for any info you can give.

Likeaninjanow Wed 07-Sep-11 12:32:41

I can't comment on Choose & Book, as I'm in Scotland and we don't have that system. However, to your other points:-

1. I absolutely, completely disagree with the eczema comment. DS2s exzema was so bad that he looked like he'd been burned. When we removed the allergens (there are many) his eczema completely disappeared. He is 3 and now has none at all. Hasn't had any since we sussed all the allergens out at 7 months. I remember going to the dermatology unit and saying I thought he may be reacting to milk through my milk. The specialist there told me there was no way he was allergic to milk, he just had eczema. He's anaphylactic to milk. Glad I trusted my instincts. <disclaimer...there are many reasons for eczema. It isn't always allergy related>.

2. My baby had RASTs at 6 months old. IT is correct to say they are not completely accurate, but they gave me an idea on what to be more careful with and what to avoid altogether.

Hope that helps - sorry I can't say anything on your other issues.

CasaBevron Wed 07-Sep-11 16:08:49

Thanks Ninja. Totallly agree with you about the eczema. As it happens, DS only has two small patches of it on his body, which have completely cleared up with two applications of hydrocortisone. ( Me cutting out his allergens from my diet made no difference at all to it.) However, I have a relative who very definitely experiences exzema flare-ups as a result of what she eats. It concerns me that I was given this advice, but I wonder if it is a case of medical professionals not being able to advise that there may be a link until it is medically proven?

garliclover Wed 07-Sep-11 20:51:55

It would be great if you could bore us with more details. How did you get the RAST tests? You only mention a hive and two patches of eczema, but what other symptoms does your DS have? Presumably you have been EBFing until now? What are you hoping to get from your appointment with the allergy clinic?

I agree with you and Likeaninjanow about the link between food allergies and eczema. My DS had very bad eczema which improved dramatically when I stopped BFing and he went on to hydrolyzed formula. The paediatrician we consulted privately when DS was 4 months old said he thought there was a link too, but that in his opinion food allergies contributed to up to 40% of eczema, the rest being linked to other factors. I know many parents of DCs with (admittedly minor) eczema who had no food allergies -- they outgrew it by the age of 1 or 2 (it would get worse in the winter because of central heating).

As for tests on babies, yes, they can be unreliable. My DS tested positive for eggs and milk but negative for wheat. However, he is highly allergic to wheat, as we discovered a few months later.

I wouldn't panic about the 6 to 12 month stage. It seems that no one really knows how to prevent allergies from developing in young children, hence studies such as the LEAP study. Our consultant paediatrician (not the private one), who has been amazingly helpful about our DS's multiple allergies, believes that if your baby is allergic to something, then he's allergic and that's that. It doesn't matter when you introduce certain foods into their diet. However, other experts may well disagree! Allergy studies seem to be in their infancy at present, so IMO it is just not worth worrying about all that -- much better to concentrate on weaning your baby slowly and watching out for reactions.

What experts do seem to agree on (at the moment, anyway) is that BFing for as long as possible helps to prevent allergies (it wasn't an option for my DS, who associated the pain of reflux with feeding sad).

Sorry, have gone on a bit, but one final thing: avoiding eggs and wheat when weaning is not as difficult as you might think. Plenty of books and websites out there which can help!

CasaBevron Thu 08-Sep-11 07:35:56

Hi Garliclover

He had a hive reaction to egg after he got a bit too close to my DDs baking. Just on the face and just where the egg touched. The doctor was surprisingly quick to agree to the test, perhaps because I told him I'd spent enough time on MN to know that what I'd seen was an allergic reaction!

Yes, I have been EBFing up to now. TBH, if I hadn't seen the egg reaction, I would have no idea that he had any allergies at all. He's a really happy baby, suffered with colic early on but this stopped at around 13 weeks as you would expect. His sleep is crap, but then so was DD's and she has no allergies. However, having been on the lookout, I have seen a hive on his head (it's usually on the back of his neck or head, there has once been one just in front of his ear) when I have eaten apple and banana and, as I said, when I reintroduced wheat into my diet. It's always a single hive, and goes within half an hour or so. I don't know if this is any kind of indication of the strength of reaction he might have if he actually digested the allergen himself? He has also lately suffered terribly if I have eaten tomato. He has obvious stomach pain and will then produce a green watery nappy full of mucous. As soon as he's done this he's fine again. Cherry toms seem to be the worst culprits, and I have just discovered that the take-away meal I eat every Friday has a sauce full of tomato puree but he has no reaction to that at all blush. He also suffers to a lesser extent if I eat potato. The nurse I spoke to told me that this could not be treated as sign of an allergy and that I should have been referred to a gastro-intestinal specialist. Again, I have seen this contradicted on here.

I have about a million questions that I would like to ask a specialist, and TBH I'm not happy to wait another five months before I can get access to the information I need. I just want to be sure that the person we see is the right one. I am, and always have been, someone who needs information now. I can't just sit back, wait to see what happens, and worry about it then. It's not in my nature. I'm becoming frightened to eat anything that I haven't eaten before, and panicing about things that aren't necessarily a problem - for example, I ate two strawberries at lunchtime yesterday without really thinking about it. Then I spent the rest of the afternoon worrying that I would see a hive reaction when I fed DS. I have eaten them throughout pregnancy and since, and never seen a reaction. This morning he has done a green poo. Just a bit green, not mucousy or anything, but now I can't help worrying that if I eat strawberries again the nappy is a sign that he'll have a worse reaction. If I wasn't so paranoid I woud be quite happily putting the green down tio the fact that he's teething and that he also has a cold. I can't live like this until January!!

Okay, now I've gone on too, but you did ask! Hope you make it to the end!

garliclover Thu 08-Sep-11 10:02:48

I completely sympathise with you wanting more information now. Trying to navigate your way through allergies while BFing is a complete nightmare. It drove me insane (and the irony is, that while I cut out pretty much everything and became as thin as a rake, I completely pigged out on bread, thinking that it was the only safe option and not realising the skin prick test result was a false negative!). It was only when I started weaning him and 'challenged' him that it became clear (and I mean very clear) what his allergies are.

BUT (and I mean this to be reassuring), it helps to put some perspective on things. I think the specialist nurse has a point: your DS's symptoms seem very mild. It was always obvious my DS was allergic to something: very bad reflux, eczema so awful he would scratch until it bled, constant clawing at his eyes with pain (we had to co-sleep in order to pin his arms down at night), constant discomfort. He stopped smiling altogether for at least 2 months. Even with these symptoms we didn't get a referral until he was 12 months old (though we finally got a prescription for hydrolyzed formula when he was 6 months), because there wasn't strictly a 'failure to thrive'. Also, even though he displayed those symptoms while being EBF'd, he has not yet (touch wood) had an anaphylactic reaction to food he's eaten (just very scary immediate projectile vomiting, rashes and wheezing).

Sorry, I bore you with these details in case someone else's experience helps!

I also mean this in the best possible way: it is only fair on those babies who are truly having a bad time to help shorten the queue for the woefully few allergy clinics in this country. Part of the reason having a DC with allergies is so difficult is that we are not taken seriously by HCPs, and I think that's partly to do with the number of parents who push unnecessarily (but understandably!) for referrals. But please understand: it's not that I don't sympathise with your situation -- it's just that I think in this case a private referral might be the best option, and the quickest. The Allergy UK helpline can help you find the right person/clinic. Probably best to see a specialist allergy consultant, rather than a paediatrician with an interest in allergies, IYSWIM.

CasaBevron Thu 08-Sep-11 10:26:56

Thanks, I absolutely take your points as you mean them to be taken! Especially the fact that provision for children with allergies is woeful. I appreciate that there are many babies with a more urgent need than mine and I would not want to push any of them down the queue. However, I cannot just sit around and wait 'til January. I know that I am very lucky to be in a position to be able to afford a private appointment, I just want to find the right person, as I certainly cannot afford to make a mistake! It just rang alarm bells with me that a specialist nurse representing a purpose-built paed allergy clinic would give me advice that I could see being contradicted on here by what some of you have been told by consultants. Thanks for the tip on the Allergy UK helpline.

Thanks also for sharing your experience. It does help to put the way DS is reacting into perspective. I know I may come across as a pushy mum, when actually it does not look as though I am having to deal with half of what some of you have, but I obviously just want to do the best for him. This has come as a real shock, especially as neither DH nor I have any issues with food at all, likewise DD.

garliclover Thu 08-Sep-11 11:50:13

I'm sure it is a shock. DH and I have no food allergies either, just very mild hayfever. So we were in denial for a time. I think it's great that you've identified potential problems and are doing something about it. If it helps at all, we went private when DS was 4 months, and consulted a paediatrician at the Portland Hospital in London. The staff there were very helpful. Also, I have since learnt that the Evelina clinic is the place to go. We have always yearned for an appointment with [[ Adam Fox] -- I think there is a long waiting list but you might be lucky if there is a cancelled appointment.

We paid about £250 for a first appointment and a further £250 for skin prick tests (we're now broke! but that's also partly because of childcare...). I think that's about standard. We certainly can't afford that again, but we were desperate at the time! Good luck smile

CasaBevron Fri 09-Sep-11 10:15:22

Thanks smile.

Just another quickie - do I have to get the doctor to refer us for a private appt, or can I arrange it direct with the consultants office?

garliclover Fri 09-Sep-11 15:11:52

You can arrange an appointment directly (we did), but I believe (though not sure) that it's best to get a referral letter from your GP so that they can stay in the loop, as it were. But this is a very confusing issue!

ChocaMum Fri 09-Sep-11 21:21:10

Hi Casa,
Ninja and garlic have already been great in their responses so sorry if I am just repeating things.

Eczema is definitely related to allergies, especially when eczema appears in the first few months of life. The theory behind this is that if you are exposed to food through the gut first then you don't develop an allergy, but if in the first few months of life when your immune system is so immature food crosses through the skin because of eczema, then you have a potential to develop an allergy to it.

Secondly eczema does flare up with food allergies in a large number of people, I suffer from eczema as does my DD and we both suffer from flare ups from certain foods. However not all of these foods cause an immediate allergic reaction in my DD, and definitely not in me.

Tests help in giving information but they are not conclusive, the only way you can be sure is after your DS has actually been exposed to food. So for example my DD had an anaphylactic reaction to peanuts at 9 mo, the skin prick test when she recovered was positive. She had another anaphylactic reaction to eggs after negative skin prick and blood tests to eggs a couple of months later. And she still tests negative to eggs. But it is very obvious she is allergic them and we have been told to avoid them. And she has tested positive to white fish which she can eat without any problems! As with lots of things in medicine, what you say and have seen counts for much more than what tests show.

The 6-12 month stage is unlikely to make much difference, the current evidence thinks it's the first 4-6 months you can attempt to make a difference, and a lot of that is with strict eczema management to keep the skin barrier healthy and intact. After 6 months it's unfortunately a matter of wait and see what happens.

Although your DS' symptoms to sound mild, the nurse is wrong to say that your DS should have failure to thrive to be urgent because that is really the extreme case scenario you want to avoid. The problem is as garlic has said that there is a huge demand for allergy services, with a huge cut in funding over the last how many years, and is about to get worse.

Where abouts do you live? I'm only asking because we are based in London and I spent a long time researching the current specialist my DD is seeing, have seen three other specialists who were pretty much useless and actually made things worse. By the time we were seen, and dismissed by other health professionals, my DD had gone from the 50th percentile to below the 0.4th percentile, her eczema was awful, and she was vomiting at least once a day with food and choking and gagging all the time with food, plus a lot lot more. So I can completely understand you don't want to get to that point before you're seen, because it is far better to avoid all this if you had the opinion of a proper specialist.

Anyway in case you ate based in London, we see Dr Helen Cox at Queen Mary's hospital Paddington, but she also does private clinics at Harley street.

For a private referral it is easier if tour GP can do a referral because they should include in the letter any useful background, and then the private doctor can write back to your GP with appropriate advise including any medications/dietary prescriptions that they can prescribe at a much cheaper cost to you than private prescriptions.

Sorry for going on so much, HTH! smile

CasaBevron Sat 10-Sep-11 13:07:26

Thanks for your advice ChocaMum. Unfortunately we are not in London, although I am willing to travel if it is necessary. Your DD's experience sounds terrible, I am glad you have now found someone who can advise you properly.

The good news is I have given DS some baby rice (albeit with breastmilk, not dairy) and he is still here!! Such a scary time when the RAST results we have been given are not necessarily accurate. Am terrified every time I think about giving him a new food, but onwards and upwards I suppose.

CasaBevron Sun 11-Sep-11 12:50:29

Okay, another question - if he might react to apple (saw a hive reaction after eating one and feeding him later) would you give cooked pear? This was my plan for tomorrow but it just occurred to me that it might not be the best thing to give him in the circumstances? Flippin' hec, this is going to be a long process, isn't it?!

garliclover Sun 11-Sep-11 14:23:32

From what I have learned about allergies in the past year (and I have been obsessing about them), your DS is extremely unlikely to be allergic to apples, and even more unlikely to be allergic to pear. Really, you can't go wrong with pear. The only downside to apples when weaning is that they can be too acidic (not great for babies with reflux) and cause constipation when cooked (like carrots). As far as I know, the only fruits that may cause problems (and even then, you'd be unlucky) are bananas, avocados, papaya, berry and citrus fruits (the latter in particular).

Allergies to egg and wheat in babies are not that uncommon. I know it seems like a nightmare, but even babies with multiple allergies like mine can eat an extremely wide range of different food.

garliclover Sun 11-Sep-11 14:38:57

Sorry, meant to add that I would recommend steering clear of the main allergens (wheat, egg, soya, seeds, nuts, shellfish, citrus fruits). Then try to relax about the other foods and wait a week before introducing each new one. I would also recommend reading up about allergies (and not on the internet, apart from kellymom and mumsnet obviously -- something like the British Medical Association's book "Understanding Allergies"). It is just so unlikely that the hive reaction was caused by apple proteins passing to your baby through breastmilk. smile and wine

CasaBevron Sun 11-Sep-11 17:25:55

Garliclover you are being very patient in indulging me - I know what you mean about obsessing! It's just that the apple was all I had eaten that day, nothing before that since dinner the night before. Four-ish hours after I ate it, I saw the skin reaction. I'm now too frightened to try him with it. I suppose what I could do is try eating it myself again and see if it has the same result.

Am doing sweet potato for dinner tonight, so he can have some of that tomorrow. That will be less of a heart-in-mouth experience I think!

garliclover Sun 11-Sep-11 22:59:00

Sweet potato seems like a v good idea. Hmmm, puzzling about the apple yesterday...but am sure it's nothing to worry about! Orange vegetables, they're definitely the way forward.

babybarrister Mon 12-Sep-11 06:25:33

Message withdrawn at poster's request.

CasaBevron Mon 12-Sep-11 08:10:58

Thanks guys. Interesting about the skin being the allergen, so many of the pouches of baby food contain apple or pear, it would be great to be able to use them if DS could tolerate the fruit.

Babybarrister, can I ask you about the difference between skin prick testing and blood testing? I have never seen DS have a skin reaction on direct contact with any food, apart from egg. He has definitely had (facial) skin contact with some of the foods that are causing the hive reaction when I feed him. Would the skin prick tests therefore be accurate for him, or are blood tests more likely to pick up a potential reaction? I don't really understand the difference between them confused.

CasaBevron Mon 12-Sep-11 10:01:11

Okay, panic stations! Just gave DS a tiny piece of sweet potato on the end of a spoon and within ten minutes a spot appeared on his cheek. I have put a pic on my profile, not dead easy to see it, but this is what I have seen before whenever his skin has reacted to me feeding him. He was awake every hour last night, wanted feeding and seemed uncomfortable. It must have been the fact that I had it for dinner. That's it now, I can't give him anything else! If he reacts to sweet potato, how on earth can I be confident in anything more potent?? Going to get on the phone now and try to get a private appt somewhere soon. Gutted. sad

Likeaninjanow Mon 12-Sep-11 10:51:25

Hi CasaBevron, I'm sorry you're going through is very stressful. I guess we were 'lucky' that DS2s reaction was so severe we were in no doubt!

The pic on your profile does look like a hive. It's very odd there's only one though. My DS2 is usually covered in a rash of hives, not just one. Maybe someone else has experienced this and will be along to help. Or could it be something that's touched him? Maybe something on your/his hand?

My brother has a banana allergy, so it's not unheard of. I also know of allergies to the nightshade family, which includes tomatoes, potatoes, aubergines etc. Has he reacted to any of those, or only tomatoes?

I'd recommend rubbing a tiny bit of anything new onto his skin before feeding him it. Not all children react on contact but, if he has a severe allergy to anything, it's quite likely.

In the grand scheme of things, I wouldn't be too concerned about a single hive, but he does seem to have other symptoms making him uncomfortable so it's definitely worth testing I'd say, to pin-point the issue. You should keep piriton handy in the meantime.

CasaBevron Mon 12-Sep-11 11:27:31

Thanks for a quick reply Ninja.

I am clutching at any straw going to be honest to try to explain this as something else, but I had made sure I washed my hands before I gave him the sweet potato. He had been sitting in his pram, in fact I think I put the spoon in his mouth and then lifted him out, so he hadn't touched anything except me! Would you DS react with many hives to even a tiny amount of food?

DS has reacted to potato and tomato and also peppers, but having cut any nightshade foods out of my diet I don't know about the rest. He reacts the same with any of these. Frequent feeding to ease obvious stomach pains followed by a really dreadful green mucousy nappy. Typically, if I were to eat tomatoes at dinner (5.30ish), he would feed hourly from about 10pm and poo at about 4am.

The skin thing is what puzzles me. As I said before, he has definitely had skin contact with, for example, banana, but no reaction. Very weird.

What concerns me now is that these reactions are quite recent, and I wonder that as I start cutting more and more food out of my diet I am going to cause him more problems by repeated exposure to the same foods again and again through my breastmilk. I am absolutely certain that the last time I ate sweet potato he had a settled night with no problems, as I have been keeping track of what I eat and how he is reacting to it. I am basically living on rice, wheat free pasta, veg and meat/fish, but I wonder if - ironically, being as pro-breastfeeding as I am - I would have been better bottle feeding?

The good news is that I have spoken to Allergy UK who recommended Adam Fox, in the absence of any private consultants within a million miles of where we live (well there was one, but when I googled him, he turned out to be dead!!). I have an appt in about 4 weeks, so at least we can start to get some answers.

God knows what I am going to try him with next. Looks like he'll be on baby rice for the foreseeable...

Likeaninjanow Mon 12-Sep-11 12:48:39

My DS can be anaphylactic to even a minute amount of food, which generally starts with a rash of hives appearing. But, each child's reaction is different, so maybe yours just gets one, but then has these other symptoms along with it.

I think, if I were you, I'd continue as you are doing with the food diary - this is essential. I'd avoid all the nighshade food group completely, along with the other foods he's had an obvious reaction to. Other than that I'd continue to try new foods, albeit cautiously. Introduce one new food per 5-7 days, and test on the skin beforehand.

How you choose to feed him is a very personal decision. I bf my DS2 until he was two, and eliminated all his allergens from my diet. This was fairly straightforward because it became clear very quickly what he was allergic to. As you are still identifying the allergens it will be more difficult. Entirely up to you, but I'd recommend reading into it a little.

Anyway,...that's what I'd do if it were me in your position. I'd be more worried about the stomach pains etc than the hive though.

Fantastic news on the referral.

CasaBevron Mon 12-Sep-11 14:32:58

Thanks again Ninja. How scary for you and your DS. Puts it all into perspective really. Thought it would take longer to get an appt, and have also gone on the cancellation list, so if we get lucky it might be that we can be seen sooner.

I am determined not to stop breastfeeding, just don't want to make things any worse than they are. I have already dropped three stone since DS was born, and am a little afraid to eat anything I haven't had recently in case of a reaction. Of course, I now have my mum telling me that he must be weaned, he won't manage on just my milk (he is a big baby) etc, etc. so there is that to deal with too hmm. Will just have to practise nodding and smiling.

garliclover Mon 12-Sep-11 15:59:42

CasaBevron, I'm worried about you now. It seems you're cutting way too much stuff out of your diet, without having the full facts about allergies at your disposal. The quicker you can see Dr Fox the better, IMO.
Where are you getting your calcium and iron from? Three stone is A LOT and (please forgive the assumption) not necessary in the light of your DS's symptoms.
I still haven't regained the weight I lost when bf'ing my DS with a silly exclusion diet. I was misinformed and paranoid, and I think you're in danger of going down the same route!
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