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worried about what happens next(21 Posts)
My dd is now 10 months old, she has a milk allergy although i don't think its that bad. She can have milk in bread, cakes etc and can have a small amount of cheese but not yogurt, milk or any more cheese than 5 strands of grated cheese in a sandwich.
I've challanged her a few times and every time its the same she starts off with really bad diarrhea (so bad her bum gets red raw and her nappies don't contain it all) then she has a small rash around her mouth which eventually spreads to her neck and back (this sometimes appears after eating chocolate, bread, biscuits etc but not always) she will then start being sick and eventually shes wheezing and her skin on her hands and feet start peeling and going red raw. All this will happen over 3 days. (now I've written down what happens to her I think I want to change my mind about it not being that bad)
A few people have said that once she is 12 months old the dr will stop prescribing her neocate. I know I need to make an appointment to see gp to discuss what will happen next, but im really worried and wondered if anyone experience.
Will they really stop her milk? What will I give her?
I should also say initially she was on soya until the gp got his act together and accepted she had an allergy and also had similar to reactions to that after being on it for 4 weeks, so that's not an option either.
I've also had no support from the drs with this although we did see a pead once (not an allergy specialist) and he discharged her and said he was happy with her on nutramagren, move to neocate if there was any problem (which we did) hopefully she would grow out of it and he discharged her saying he wouldn't need to see her again.
all challanges have been done without any dr input, they just dont seem bothered.
So I just want to get it strate in my head about what to expect and what is reasonable to demand iygwim
Personally I would be seeing GP and getting referral to allergy specialist and/or dietician. My DS <no known allergens and strange allergies> saw cons pead who took it very seriously and he is no way as bad as your DD and only ever has had 1 severe reaction.
That reaction is bad and did you know anaphylaxis can occur up to 72 hours after ingesting an allergen? Sorry if that sounds scary but it seems to be whats happening to your DD.
Don't let the DR's brush you off.
Lots of others, very knowledgeable will be along soon and many have dealt with CMP allergy. They are great ladies and have helped me survive the past year. <didn't want your post unanswered though>.
Oh and I'm sure the others will advise you better but I would suggest cutting out all milk until you've seen a specialist.
sorry meant all milk products - so cheese etc.
Thanks, I just feel so alone on this i have to fight for every little thing (eg to get 9 tins of milk per prescription rather than 2 which is rubbish when it takes 3 days for a repeat to be sorted and 1 day for the milk to be ordered, it was a never ending cycle as 2 tins lasted 4 days, 5 at a push!)
I know I'm probably not doing any of this right (giving her products with milk in it) but I don't know what I'm doing. I was told to challenge her and she doesn't react to thoes products so I thought it would be ok. (she only reacts if I give her a baby breakfast ie porrage made with her milk, but contains milk, then a cheese sandwich for lunch then give her a bite of chocolate for example if I'm eating it, and then the next morning she has a really bad nappy and we avoid all milk products for a day or 2.)
Bump this tomorrow for the lovely ladies to come and help.
You are not alone there are (sadly) many of us who have allergic DC's.
You flit between, terror, relief, happy, angry, sad, confused and many more.
I am on a happy atm but know if DS was to react again to anything I would be at my lowest - that's when MN really helps.
You need to go back to the GP and insist on a referral to the local allergy clinic/consultant. They will take over the prescription of neocate (which can continue until 2 years old, when you can switch to oat milk if soya is a problem - alternative 'milks' aren't suitable before the age of 2 as too low fat, and if soya is a problem then you haven't got any alternative but to continue with formula until then, so don't worry). They will also refer you to a nutritionist who will be able to help you with making sure you give a balanced diet.
I really wouldn't give any more milk products at all, not even a tiny bit, until you discuss it with a qualified consultant. I know its a pain, but it sounds like a pretty bad reaction.
I know its a pain at the moment with the formula, but when they get older and can use alternative 'milks' (assuming they haven't grown out of it by then), its so much easier. So its only for a little while longer.
I agree - go with the new NICE guidelines which make your case for a referral to a specialist allergy clinic - they are on the Anaophylaxis Campaign website. Unfortunately we all have to fight all the time .....so you are not alone! Good luck and come back on here for advice
You definitely need to see an allergy specialist, not just a paed. We were also fobbed off by a paed, and not taken seriously by the first allergy specialist we saw too. I'm afraid you have to be pushy, I get the impression all mums with dc's suffering allergies have to be pushy because allergies are not well understood by the medical profession, let alone the public.
Your DD sounds like she has severe reactions. Anything involving wheezing should require a referral to an allergy specialist. And they shouldn't stop prescribing your DD neonate at 12 mo from what I've heard.
I honestly know that horrible frustration of constantly battling with the GP, but how many tins your DD needs is just common sense. They should give a minimum of a months worth at a time, and can give up to three months per prescription.
You are definitely not alone. But I completely understand why you feel like this. It is not an easy road, but once you see an allergy specialist and a dietician who specialises in allergies things will get much easier. Good luck and HTH.
Thank you, I really didn't think she was that bad. Not compared to some of your dc anyway.
It's good to know she can have neocate till she's 2 and i will
demand ask very nicely to see a specialist in the allergy clinic.
I was meant to add after one they can go onto commercial milk products like oatly or hemp milk, but neonate has more calcium and fat than these milks which your DD needs at her age.
Having been down this road with ds3 I have to say that going to see a local highly recommended oesteopath changed our lives. (A full one not just cranial), someone whose daughter had a yeast allergy recommended it. My ds went from being a very upset screaming baby to a happy one able to tolerate all foods.
The oesteopath did say that treatment did not cause such dramatic results in all cases but it certainly worked for us. I don't know how it works but I am a convert.
I agree with pestering GP I saw him practically weekly with ds3 and felt like I was a paranoid Mother, even though he was my third but hey i was right, got some private treatment and miraculous results so keep on fighting.
tortoisefairy - I'm intrigued... how can an osteopath possibly make any difference to true allergic conditions? I'd be interested in any scientific papers you can link to?
I too had to fight for a prescription for my DD (3) to be on neocate.
The good news is that once the dietician took over the prescription I have had no problems and just have it on repeat iyswim at our local chemist.
My DD is also still on neocate now so it may not stop when your LO turns 2 although my DD cannot tolerate oats so maybe that is why...
I have an allergic dd too and I know how you feel.
She is nearly 3 now and we had to fight for appointments and prescriptions until she was nearly 8 months then got referred to a dietitian at the hospital.
She was then diagnosed with CMP allergy and prescribed Nutramigen AA which I had to fight to get in larger quantities- so it went from 2 to 9 tins a time - but once it went to repeat at the chemist it was fine.
She has fairly recently partly outgrown the CMP allergy and can now have fromage frais and food cooked with milk,cream,creme fraiche etc. Also things that have milk or soya on the list of ingredients are generally ok.
She has got other allergies such as egg sesame and peanut which she carries an epipen for and has other unexplained reactions so we are not out of the woods but it's better than it was.
You need to keep on at the gp until you get a referral for proper allergy testing, food challenges, dietitians etc.
Don't let them tell you they have to be a certan age to be tested, its just not true.
Dd had what I can only assume was an allergic reaction to something unknown tonight totally different from normal her back came up in big round red blotches with very clear spaces between them. (usually its one rash all over like the photo on my profile) I've given her her anti-hystimine and put some of her anti itching cream on it.
So now I will go and see the Dr and demand more to be done, its just not fair on her.
good luck, your poor DD
Did you take pics of the reaction to show GP?
Also I would make a note of everything eaten this evening so you can try and work it out or so that you can tell them at the hosp when they come to do allergy testing.
i didnt take a photo this time, i kind of wish i had now as its so diffrent to 'normal', and i think the reaction was caused by something she touched rather than eaten, unless it was a very delayed reaction which i know is possible.
she still has 1 big red blotch on her back this morning (about the size of a 50p) that she keeps scratching, i put gloves on her and now she is having a tantrum so i'll be ringing the dr later on this morning to try and get an appointment
Just to say that I had to fight every step of the way to get my DS referred to a specialist and then get Neocate on prescription but once we did there's been no problems. He's now 4 and still on Neocate, dietician wants him to stay on it until he's 5 so definitely no need to come off at 1! Get your boxing gloves on and get back down to the GP to fight for that referral to a consultant and dietician. Does sound as though you should be avoiding all dairy so you need to get some proper advice. Good luck.
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