When your child begins to react even to rice milk, what do you do?

[IsabelWatchingItRainInMacondo]

I posted a couple of months ago saying how happy we were as DS had outgrown his soya allergy and fish allergy (although he remained alergic to wheat, nuts, peanuts, milk, etc)

DS is fascinated with soya, it has opened his eyes to ice cream, chocolate mousse, chocolates, and many other things. But I'm not so sure he did outgrown the allergy as we were told, he gets very red around the mouth which is not my main worry but how it may be affecting other things. I feel it will break his heart if I remove soya now , at the moment I can serve him something from the rubish bin and he would happily eat it if told him it had soya in it...

The other day he had a bit of salmon and was covered in spots, TBH if he had not had chicken pox before I would have swore he was getting it.

And to make the matters worse, he is now reacting to Pure and rice milk, I'm suspecting the sunflower oil in them, but really, if I can't give him cows milk, goats milk, soya mil, oat's milk or Rice Dream, what can I give him???

This is one of those days when I have wondered how he would manage in the future if he continues to add allergies to the already long list.

What do I do?

oh no. nothing really helpful to say, but hope the situation will improve.

does he have to have any sort of milk substitute, or could you go ahead milk-free?

have you tried sheeps milk, I noticed it wasnt in your exhaustive list. I once heard that the milk that is the most like human milk is apparently donkey milk - probably not much help to you though.

I have tried sheep's cheese but gives him a slight reaction, worry about using a sheeps dairy product on a daily basis.

He is only 4, he needs to get his calcium and fat from somewhere and no matter how much I rely in calcium rich vegetables it seems to me they are not enough. Sigh*

it is difficult isnt it.

look at this, I have just realised that there is a whole donkey milk industry!
www.bbc.co.uk/radio4/factual/foodprogramme_200507011.shtml

It was someone from the med who told me about it being healthier for children.

Donkey milk! thanks for the reference, will have a look at it. I really can't see what else to try but wonder if DS will mutate at some point after so many substitute foods...

Thank you for looking the info for me, that was very kind of you.

(I have the vague recollection that I heard about donkey milk being used when I was a child, perhaps one day we were visiting a farm)

I react to cows milk myself, so have interest in teh subject. Also had multiple allergies in my early 20s, thankfully now recovered.

fingers crossed your ds will continue his progress towards growing out his allergies.

I can only give you a heartfelt hug. Can he go without rice milk? Does he need it for his calcium, if so, what about Calcium Sandoz as his calcium source? I assume with all these allergies he sees a dietician regularly, does she give any suggestions?

This is a somewhat bizarre suggestion I know, but have you considered giving him breast milk? Maybe from a friend if you were comfortable with it or if not it is possible to relactate using a breast pump (some people who are adopting manage it). I guess it would also depend on whether your DS is sensitive to EBM if the person producing it has eaten dairy, soya etc.

I'm not suggesting BF direct but giving it him in his food, in a cup etc.

Hope that wasn't too outlandish a suggestion for you Good luck with finding something suitable.

I second calcium sandoz, we get it on prescription for ds2 as he refuses the rice milk. Also you can get some juices enriched with (small) amounts of calcium, Tesco do 3 small cartons in a pack apple and tropical flavour. If he's no longer allergic to fish can he tolerate sardines, salmon? Baked beans, brussels sprouts, broccoli, spinach, kale - these are all things we use for ds2 Its difficult, but every little bit adds up.

Thank you all for your replies.

I'm going to make an appointment with GP tomorrow to see if I can get a referral for the paediatric allergist. Unfortunately, I noticed that due to the complex combination of allergies DS has, we have outgrown the dietitian. Last time I talked about all this they asked me if it would be OK for them to give my contact details to other mums who may benefit from the knowledge earned through DS's problems.

Will ask about the Calcium Sandoz though. He can not have other juice than apple juice, baked beans get his face puffy and sardines and salmon are, after last reaction, out of the question. But he loves his broccoli (knocks on wood)

Nineunlikelytales, I stoped breasfeeding about 3 years ago, if I managed to produce milk again I would be your tenth unlikely tale

The tesco apple juice is the carton one here juice Sympathies, its really difficult.

you can re-initate bf...

with a breastpump or by hand. it might really help suppliment your son's diet.

speak to a bf councillor for support.

otherwise i would avoid milk altogether and try apple juice in cereal, apple andpear puree (black jam) etc

my son was allergic to cows milk after being bf and sensitive to peanut oil/palm oil.

: (

Surely you should still be able to see a dietician to be advised how to ensure adequate calcium intake that is milk free?

He doesn't need to have milk to drink at all to get adequate calcium. Sounds as though you need a further discussion on it now he is older and things are changing.

Isabel it would be possible, honestly! Some people manage it who have never BF at all. But like Mears says, you need advice about how to give him a milk free diet with plenty of calcium. Vegans manage (though it is difficult) so it must be possible. Hope you get it sorted

Mears, I have been already given the info about how much calcium he should have per day (calculated on provamel quantities ), but the problem we have found is that due to the combination of allergies he has (dairy, wheat, soya, nuts, peanuts, fish, eggs and some fruits and vegetables) it is difficult to find something that doesn't contain at least one of those allergens mainly because he is also allergic to the usual substitute (hence our joy at him apparently outgrowing soya allergy).

My last hope was Neocate but be because he is older or because he can not have bananas before vomiting (and the neocate came in banana flavour), he couldn't stomach it.

Every time I speak to a dietitian I end up providing the poor women with a list of references and free-from products they were not aware of. They normally are used to deal with 1-3 allergies at a time, but finding something beyond that is tricky for them (as it was for me, but unlike them I have just a single case to research/deal with).

Nineunlikelytales...considering how sensitive he is to any kind of dairy I wonder if at the end of the day and all that hard work he would be able to have it, but I would ask about this (pray I get the appointment with a sympathetic doctor!)

I see. Sounds as though he will require supplements then doesn't it? Hopefully he will outgrow some of these allergies. What a struggle in must be for you both.

isabel if the reactions are not life threatening have you tried following a rotation diet for the milks or cheese to which he reacts least? It takes 4 days for something to leave the system and if your child is Ok with small amounts of a substance but not large amounts a rotation diet may allow them to eat it once in 4 days.

Also what brand of baked beans are you trying? The reason I ask is that my child cannot have C&B but is OK with Heinz or Sainsburys. We don't actually know if it is nut contamination, soya or one of the other ingredients - we've just discovered it the hard way. My child can't have soya milk but is mostly OK with cooked soya.

Does sound like calcium supplements will be needed though.

Hi Tatt,

I think I'm feeling a bit misserable with worry about what the future holds. He has been in a restricted diet for more than 2 years now but, now that we have been advised to start reintroducing some things, the reactions he is having are quicker and more noticeable than they were in the past. These reactions may not be life threatening (knock in wood, have enough with peanut and egg allergy) but still are immediate and uncomfortable enough for a 4 year old, whether it's pain, wheezing at the night, rashes or broken lips, he is not exactly having a good time

I'm very wary of baked beans since he had a reaction that left him with a puffy face and inflamed eyes for 2 days. Besides, legumes don't sit well with him, be lentils, sweet peas or a peanut, he always has problems with them. He gets some foods from the free-from range group, but other than that all his food is cooked from scratch. I can't remember when was the last time he had something tinned (no smugness, here, I would do whatever for him to be able to eat what other children do without problems).

What gets me depressed is that, although he has had some small progress with some things, he seems to be growing allergic/intolerant to so many others that I'm running out of options.

there is always hope for the future. Firstly he's only 4 - he may yet outgrow some of his allergies. Secondly there is research going on about treatments. For example someone thinks they have developed a treatment for peanuts that would prevent reactions. If that tests out when other people try to duplicate it and it can be developed commercially it would remove one major problem. Other people are looking at the role bacteria play in reducing allergies and may one day be able to develop a preventive treatment.

As children get older they get more used to living with the restrictions in their diet. There are days when it's "why me" but you have to try and teach them to concentrate on the positive and what they can do. They don't normally mind a restricted diet as much as we do on their behalf. Joining the anaphylaxis campaign and going to their meet ups may help as it shows your child they aren't the only one. It certainly seemed to help my child when we went through a bad patch.

My child is developing extra allergies too and I know that feeling of utter despair. But there may be treatments is 10 years, we just have to keep them alive until one is found.

Isabel - I could have cried when I read your post. I was starting to think I was mad as my DS seems to develop more intolerances as he gets older (to date we have RASt confirmed allergies of egg,sesame & dairy but also hive inducing reactions to soya, lentils, beans, peas and all fruits except cooked apple. I can get him to eat meat about once a week if I'm lucky). We've a paed appointment tomorrow and I'm going to ask to be referred to an immunologist as well as the dietician again (I think St Thomas' in London leads the way in this) Re the BF: I bf for 10 months but had to stop as my diet seemed to be affecting him & I lost loads of weight trying to manage it. He's on neocate now. Could something like that help your son? will try to CAT you later as I'd love to swap groans/support

My DS is 18mths BTW

Just a thought, I'm not being nosy but what is your and DH's nationality? I only ask as we are asian and I have found out that over 70% of asians are intolerant to dairy as are my children. The western diet which is rich in dairy doesn't suit us and I try as far as possible to give us all a diet closest to what we would have eaten in our own country where dairy is hardly eaten.

Oh

I have no helpful suggestions - am currently watching Psychomum trying to feed her son who reacts to oodles of things, and herself as she has just been diagnosed with a milk allergy.

W/r the breastmilk - surely that would mean a full exclusion diet from the person expressing too?

Flame - that's what I had to do after DS had a big reaction to a hot chocolate I'd had whilst out (I rarely have milk)& we identified dairy, wheat, strawberries, dried fruit, chicken & egg ( I lost nearly 2 stone excluding foods, which is why I had to give up bf )

Oh sympathies Isabel - this must be soooo hard to manage. Neocate does come in flavours other than banana - perhaps it would be worth asking to try another one.

Dried figs are also a tremendous source of calcium - is he ok with those?