Outcome of appointment / Leap Study?

[strawberrycornetto]

Hello everyone. Thanks for all the useful and kind advice on my earlier post. We saw the consultant allergist this afternoon.

DS had the skin prick test done. They tested for the normal common allergens plus brasil nuts because of my allergy. They didn't have sunflower oil which I think he had reacted to but tested him for sunflower seeds instead. He did get a positive reaction to milk, as expected. I can't remember what the size of the mark was. Although both of his arms were very blotchy all over and there did seem to be a very small reaction to the sunflower, all of the other tests were classed as negative.

We then saw the doctor. He was nice and v knowledgeable but DS was a bit fractious and the appointment was quite rushed. So I do feel really annoyed with myself because I didn't ask quite a few questions that I had planned to ask, despite the fact that I wrote them down. Also, the advice was significantly different from the advice of the dietician (as you guys warned) so I am kind of confused. In particular, I forgot to ask what the chance was of him still being allergic to one of the foods tested if the test was his first and only exposure, or whether it was now safe for me to give him these things.

Basically, he advised us to avoid dairy with him and said he would see us again in 6 - 8 months. He suggested we all (including DD) drink soya milk at home to avoid the risk of him being exposed by accident and said not to worry about the oestrogen reports with soya (not sure how I feel about this). He didn't have a strong opinion about me giving up dairy (as the dietician advised) but seemed to assume that I wanted to stop BF because I am back at work (not the case). We discussed epipens and he considered prescribing because we travel quite a lot but he thought it was potentially more problematic and more of a stigmna and that there was a risk of it being used unnecessarily and the risk of anaphylaxis was small. I didn't push for one. We discussed DS's eczema and he said to mositurise lots, use hydrocortisone where necessary and he gave us some samples to try. He said his view was that food allergies were often developed via the skin.

He also discussed the Leap Study with us and said it might be worth us considering DS taking part. I'd be interested to hear what other people think about this? I am quite kean but am worried about the ethics of volunteering him for a clinical trial when he cannot decide for himself.

Overall, when we came away, I was relieved about the other negative results but I felt really awful because I felt that part of me was disappointed. I discussed it with DH and realised that, actually, what I feel is disappointed he didn't either get an all clear or a result that was serious enough to mean that we would need an epipen. Without it, I feel that I am going to live in fear of him having a bad reaction and the nusery panicking or an ambulance not getting there on time. I know that the risk is tiny and I'm sorry for being over dramatic when I know lots of you do have to deal with this as a much greater risk, but I am going to find leaving him at nursery now so painful and frightening and that's why I have come away feeling bad. In that respect, this was my worst case scenario. Every day I am going to be afraid that he will have a bad reaction and I have failed to push to keep him safe.

Sorry, this turned out to be long again and overdramatic. I'm really tired tonight and I'm sure I'll feel better in the morning.

hi, my son is two and a half and has eczema, asthma, and allergies to peanuts, nuts and loads other. he has shown a positive reaction to milk so he has soya milk instead but the rest of us have always used ordinary milk and he doesnt seem to mind(im so glad as soya milk is fowl.)ive just received epipens for his allergy to nuts and am waiting for an appointment to see a dietician as he always looks ill in the face. i know exactly how you feel, i to am dreading the day he goes to nursery and leaving him there, i know the staff are trained fully but i cant stop worrying especially as no one else seems to be that concerned.

Strawberry, the LEAP study is run by 2 of the best allergy physicians in the country, Dr Gideon Lack and Dr George du Toit. I would LOVE for DD3 to be on the LEAP but as DD2 is already of STOP I cannot do it as one of the exlusion criteria is a sibling with an allergy.

Don't get me wrong, I am not wanting all my kids to be lab rats but I do want to be armed with the very best information about their health that I possibly can be.

You have time to think it over and can go back to the doc at any time. If you think you need an EpiPen you need to speak up and say so. Going to these appointments is bloody scary and there is so much to take in, don't be hard on yourself.

I don't know your DS allergies as I have not seen your other threads. If you think you need more tests or need to have an EpiPen on standby then you need to say so, it is OK to go back and say you have had second thoughts.

You are not being overdramatic. Allergies are scary and you as a mother want what is best and you want to protect your LO no matter what.

BTW, you can see Dr du Toit at the Portman if you can get a referral from your GP. That is what I am going to do for DD3.

can only agree about the oestrogen content for now, not got enough time to say much else. oestrogen is probably the wrong word. there are phyto-oestrogens in soya and these are chemically similar to human oestrogen but are NOT human oestrogen. billions of asians who grow up on soya cannot be wrong!! my son had to go on to soya formula when he was 3 months, today at nearly 5 he is a strapping 3' 9.5'', lean at 2st 13lbs, quite musclely and extremely healthy but does not have soya anymore but does have dairy as he now tolerates this without any problem at all (bit different to the constant colic, skin probs and all the other dairy related nasties he has when on cow milk formula!!)

Thanks Chunky.

Blue, I am very seriously considering taking part in the study. DS only has a milk allergy and eczema so we are pretty lucky for now but I do take the risk of a nut allergy seriously so think this study is important. BTW it was George Du Toit we saw today. I luckily got a private referral through my health insurance. He was really nice and I am kicking myself for not making the most of the appointment but you are right about how stressful these things are.

Misi, thanks for the info on soya. I haven't looked into it myself, just know the dietician was a bit negative about it. actually, in terms of his diet, it seems really good he can have soya, even if its not all that nice!

must go to bed now...

Strawberry - can you ask to see Dr DT again? Perhaps if you call your insurance company and ask for another appointment due to the fact you think you need more info? Or, can you email him directly? I am sure they will understand that we are not always able to take in all the information given, especially in hi stress situations like this.

We have 3 milks, my dd has a mild intolerance so has goats milk, I have soya and dp has cows.. we use alternatives to manage eczema, my dd sees a cranial osteopath, which has made a big difference and we use a herbal cream calendula when she is itchy. I have had allergies and intolerances for nearly 20 years and the alternatives have been most effective for me.

I had DD3 tested for wheat allergy and she came up negative on both her skin prick and RAST, but I know if I feed her pasta she will have a flare up, so she does not have pasta at all. I have had her pasta-free for 6 weeks and eczema free for 3 weeks. She can have other wheats it seems but not durham (sp?) wheat.

Sometimes although it seems like a bit change is going to be a pain it just takes some trying out and thinking through and you could get a good result.

As far as the doc is concerned there is nothing wrong with DD3, I as a mother knew better and have found the food source that was causing the problem.

Go for it strawberry, you are doing a great job.

blue, when you say she can have other wheats what exactly do you mean?

all standard pasta in this country is made from duram wheat or semolina (semolina is rare though) but duram wheat is a variety on a theme and has all the same major constituents as other wheats although the gluten content is slightly higher. other pastas can be made of rice etc and so are not wheat based pasta. when she has these other pastas, does she have all the sauces as well?
I ask as I had a client once who tested negative for wheat, rice, soya buckwheat, the works but still reacted when having pasta, when she came to me I asked her if she had had a test for nightshades, she hadn't and it resulted in a postive test for alkaloid nightshades that caused the problem. nightshades include tomatoes, potatoes, peppers and aubergines amongst many more. othe have been intolerant to the spices in the sauces they have that are sometimes only used in pasta sauces?

worth a think about what else she eats at the time of eating the pasta. make a diary of anything and everything she eats and then note how she is for a period of at least 2 weeks preferably a month and see what correlates.

Thanks Misi, I have done a total exclusion diet around this subject with her and tried duram wheat pasta with tomato sauce, with bolognaise, with chilli and with cheese sauces. All were bad but the tomato sauce was the worst. I know that toms are highly allergenic and it seems if you mix this with the higher levels of gluten in duram wheat so goes into overload. If she has toms in a sauce with rice then there is no eczema at all.

She eats brown bread, granery, wholemeal bread etc with no probs at all, just pasta!

I have tried her on rice pasta which she is fine with but to be honest she is not a massive fan, she would much prefer to have rice which is fine by me. Pasta does not really agree with me so I tend not to cook it if I can help it.

Thanks again BBF. I am going to wait for Dr DT's report and then email him if I still have questions because he said not to worry if it seemed like there was a lot to take in because he was going to write it down. I also think we are very likely to go for the Leap Study and that would give me another opportunity to ask any other questions I have. Re the negative tests, my gut reaction is that he shouldn't have sunflower oil and so I am going to try to limit that. Its a slow process isn't it.

have a look at this page in the peter rabbit organics site
www.peterrabbitorganics.com/our-products/allergy-checklist/

peter rabbit organic food is rather nice. the rice pasta is good but does come out a bit ''wet'' so needs draining a bit longer but when my son was on this sort of food all the time, we all ate it, now he can eat just about anything, I don't buy as much but do still use occasionally cos is so nice!!

Many thanks Misi - you are such an excellent font of knowledge and you always take such care to try to help and explain. Many thanks hun

strawberrycornetto, firstly CONGRATULATIONS on such good test results! It may not feel like it now, but you are so fortunate that your DS is only allergic to milk and not other things!

The majority of babies with milk allergy grow out of it before they start school so hopefully you are just looking at a few years of avoiding milk products then all will be OK. I know it's all very scary to start with, but you'll get used to it and I genuinely think the best way forward with allergies is to always look on the bright side of things (IMHO).

Personally I would not recommend avoiding sunflower oil as it is in a lot of products and very difficult to avoid (especially if you eat out), and it is unlikely your DS is allergic to it - even those allergic to sunflower seeds themselves (me included) are fine with the oil.

BTW I got DD assessed for the LEAP Study when she was 7 months old. She wasn't elegible as it turned out she had a peanut allergy already, but if you do get accepted the support you get while on the study sounds very good - for example you get weekly telephone consultations with a dietician from the team. Having said that, only you can weigh up whether you want your child to take part.... there is info on the LEAP website and if you phone up they can email you much more detailed info to help you decide.

BTW if you buy sweetened soya milk rather than unsweetened it's actually quite nice and it's generally sweetened with apple juice so quite natural. You'd be surprised how quickly you get used to it and you can use it in cooking etc too.

Sorry for 3rd post in a row, but maybe you could phone George Du Toit? I have spoken to him on the phone several times both before and after our LEAP Study appointment and he was very helpful. I do exactly the same as you and come home from each GP/dietician/etc appointment kicking myself for not asking all the things I meant to!

Thanks so much cuppachar. You are right that we are really lucky its only milk, I think now the shock of it all has worn off a bit I do feel much better. DH just off to do some shopping so I will ask him to get sweetened soya.

Re the LEAP study, DH and I have read all the literature we were given and have decided to put DS forward. We think we were told at the appointment that he was eligible if we want him to take part so hopefully he will be able to. I hope its the right decision.

As a parent of a DD with a peanut allergy, do you think its irresponsible? My feeling is that the risk of developing an allergy he would not have otherwise developed is quite small, because I think the current evidence suggests that the avoidance guidelines are wrong but I would not be brave enough to give him nuts without the support. So I think its worth the risk because there is a chance it will prevent him getting the allergy and it will also mean we'll get lots of support which will also help with the allergy he already does have. I hope its the right decision.

Re George Du Toit, I am going to read through the report when we get it and work out what questions I still have remaining. After that, I'll either email or call him. Its good to know he's approachable, he certainly seemed like a good guy when we met him.

Hope everything is well with your daughter. How old is she?

It's hard weighing up whether it's the right thing to do, to join the LEAP Study. In the end we decided we would, for exactly the same reasons you gave above. Unfortunately we found out at the screening visit DD had peanut allergy so we couldn't go any further. DD was 7 months at the time and is now 12 months.

Not sure if your DS has eczema but DD had quite bad eczema which almost completely disappeared when I gave up cows milk myself! She's generalyl pretty healthy and happy although I do worry her diet's rather low in fat due to having to avoid milk and cheese. Her weight gain's been quite slow for a while although it's hard to know if that's due to her diet or just how she would have been naturally.... that's the only thing that's concerning me now really - everything else is going well.

DS is 7 months now. He does have eczema which I wouldn't class as bad but its persistent and it does seem to bother him a bit. Its mainly on his ankles and knees but also his arms hands and cheeks are pretty dry and blotchy most of the time.

I have given up cows milk but I'm only a week in. I haven't noticed much of a difference yet but I am going to give it a month.

I'm glad your DD is happy and healthy. DS is too, everyone is always remarking at how smiley he is, which is lovely. He's also had slow weight gain, only on 2nd centile when at one point he was almost on 25th, but he doesn't look unhealthy and I think he's generally otherwise making milestones so I think he's ok. As I am coming to realise, allergies aren't the end of the world, they are mainly just a pain!!

thanks for your words blue!

at 7 months you should be able to get Pepti Junior, nutramigen or similar prescibed for your child. I know a child with milk allergy who went on to develop a worse soy allergy so personally I'd try something else. Soy is a common allergen and its use has been linked to nut allergy. That may be coincidence but soy protein is similar to nut so why risk it when there is an alternative?

The children in the LEAP study get good care and attention.

Thanks Tatt. I am a bit wary of soya still tbh. I have been given both nutramigen and neocate to try although with a huge caveat about the taste and the liklihood of DS refusing it. DS had some nutramigen on his cereal this morning though and managed to eat it. So, I thought I would go with that for drinks where I need to top up and cereal but perhaps not be overly paranoid about excluding soya as an ingredient in everything. Still unsure what to do about things like soya yogurt though. It would make life easier for him at nursery and mean he could have yougurt etc when the other children do. I might speak again to the dietician about it. I guess I'm kind of hoping his result means that his allergy will be limited to a mild one to milk, but maybe that's wishful thinking.

We are going for the leap study if he is accepted. The literature we were given at his appointment looks as if he has been offered a place. Its scary but we have discussed it at length between us and with the grandparents and we all feel its the right thing to do on balance.

he'll probably grow out of the milk allergy, most children do. Chances are his gut is a bit immature and if you avoid known allergens for a while he'll be fine later on. Cooked soy (in food) is less likely to be a problem than the milk because cooking changes the proteins. My child can't drink soy milk (made her mouth tingle, her first sign of allergic response so she spat it out) but is OK with soya in food. We've never risked the yoghurt so can't really say anything about that, although if it was me I'd let him recover from the milk problems at least for a couple of weeks.

Good luck Strawberry - please keep us updated with the LEAP, it is all so interesting.

I am just totally mindblown that I am making DD peanut butter on toast every morning as part of her study... cannot get my head around it! We now have the challenge of keeping the peanuts away from DD3 as we do not know if she is allergic or not as we have to wait until another year goes by unless we have a reaction from accidental exposure in the meantime. Scary muffins!!

The doctor on the LEAP Study advised me to try DD on Nutramigen but said she would probably refuse at her age (then 7 months) in which case give soya. She also encouraged us to give soya products and also introduce other common allergens, as research suggests there's no benefit in avoiding foods - it doesn't reduce the risk of developing allergies to them. That's my understanding / recollection of what I was told anyway. You'll get a chance to discuss all these issues again if and when you join the LEAP Study anyway....