Feeling picked on by HV but may be over-sensitive. Appreciate any thoughts.

[abigboydidit]

So...here goes! DS is 6 months old and was EBF till we started BLW at the weekend. I gave him porridge fingers today and he had an instant and fairly severe reaction to the cows milk, so I called the HV to check what the next step was. She was perfectly pleasant but made more than one comment which I felt implied that the fact that DS was EBF may have contributed to masked the problem. For example, she asked how he reacted to formula and when I said he'd never had any she replied that no wonder cows milk was a shock to his system. The other comments were similar, nothing offensive and she was polite (one was about how hard it is when you breast feeding mothers seem to think you're doing the right thing by only giving breast milk... Erm, yes. In fact I though science agreed with us breast feeding mothers?!).

So, I have to go back tomorrow to see her & I would like to speak to her about how the comments made me feel (not in a nasty way! Just a chat to make her aware how her comments could be interpreted) but am worried that the emotion of everything that happened has made me super sensitive and I'm actually being a fanny totally ridiculous.

So - what do you think? Am afraid I can't remember all the comments word for word but it was really just a lot of sighing about how this could have been avoided/picked up earlier if I'd only given DS something other than BM. Don't hold back if am being silly - I'm feeling like a rotten Mummy at the moment so it may just be my attempt to deflect the guilt-trip!

OP. Where do I start? I despair of the support that is not given to, and the ignorance surrounding, allergies in this country. I suppose its better than it used to be, but there's a long way to go. Unfortunately you are going to need to fight your corner on this one for a referral from your GP I'm afraid, and go to a different GP if needed.

My DD had a very similar contact reaction to CMP (cows milk protein) when she was weaned at 6 months (EBF so no milk until then, although bad eczema due to CMP and egg in my diet). She never ate any CMP (well, a tiny crumb of cheese), and we never, therefore, had any internal symptoms. She is potentially anaphylactic to CMP and eggs.

At no point did any HCP suggest I should feed her any CMP to 'see what happened' . The correct procedure is a referral to an allergy consultant at your local hospital, who will take a case history and most probably do either skin prick tests or RAST (blood) tests to try to establish the likelihood (there is no conclusive test) of her being allergic to the most common allergens (dairy, egg, soya, various nuts etc). This will help you to know what is safe and what is not safe to wean her on to at home, and what you need to avoid until she is older and (hopefully) grows out of it. After a reaction like you describe, you should absolutely and utterly not try it at home, no matter how small the amount.

Sorry to be so draconian/forceful, but it may be potentially life threatening. It may not, hopefully, but there is no way to test that in a safe situation unless under specialist consultant care.

It may help to ask MNHQ to get this post moved to allergies, where lots of others besides me can help, advise and support. The support and knowledge there is incredible, and lots of them will have been where you are now. If you 'report' one of your posts, and ask for it to be moved, it should be easy for them to do.

Hi poppy we are ok thanks. I went all pushy medical momma and a referral to the allergy clinic is being made . Food shopping took so bloody long today because of all the label reading (trialling exclusion diet) but finding out that green and blacks ginger dark choc is milk free made it worth it

Good for you Rum! I'm afraid pushy is the way to go...

Thanks again everyone. Am sitting reading the posts out to DH who is now cheering me on for a fight discussion with the GP tomorrow. Intend to call the Allergy UK helpline before the appointment (thanks for that - it never came up when I googled) to ensure I have confidence in what am saying and wont be fobbed off this time.

In the meantime, I'll as MNHQ to shift the thread but wanted to say thanks again before I go. Especially for the hug poppycat04 - I've certainly needed one today and a gallon of wine

You're welcome Op, let us know how you get on. Good luck tomorrow.

I am almost in tears updating myself on this thread, big. I'm glad the GP was supportive of BFing but to not take the potential allergy seriously... :(

And what the nurse said? I simply can't put into words how I feel about that as it's likely to get deleted.

I'm going to PM you because I can't say what I feel in public.

Glad to hear DH is now supporting you, and that your baby will get the care he needs!

Hi there
We're moving this to allergies
Thanks
M Towers

Am on my phone and it's late so can't write much but just wanted to say that sadly this is a common story. In my experience GPs are

Grr bloody phone sorry Gps r not great with allergies and there is a lot of confusion between allergies and intolerances. Gastric symptoms r more common in intolerances but I was also told that my DS didn't have CMPA because he didn't have diarrohea - what a load of rubbish! I won't even start on the bf issue as others have already said how awful the HE's attitude is but pls stick to your guns and fight for the referral to specialist

Actually yes, she is quite right OP, you could have picked this up earlier if only you had given him some formula. It would have been so much better for your baby if you had done as we did and mix feed then he could have been screaming in pain as my DS was for weeks and weeks and weeks. Eventually a doctor took my concerns seriously and diagnosed milk allergy but in the meantime my HV gave me helpful advice and insisted his crying, constant diarrhoea and bleeding bottom was due to being allergic to his fucking nappies...

Your HV is a fool, much like mine was. You have done a brilliant job BF for so long. Ignore her silly and ignorant comments.

Sorry, see thread moved on considerably. I just wanted to add my support. Glad you are getting more info and advice now.

Hi everyone. Thanks to MNHQ for moving me to allergies. Morning update..as suggested yesterday I touched some milk to the back of DS's neck and it came up in huge welts (I have taken photos!). Have called the GP and have a telephone consultation for 10.40ish & have a toddlers groups from 9.30am so am desperately hoping Allergy UK opens early enough that they can advise me. I know my GP will likely insist that I try him with some orally and I really don't want to do this. Problem seems to be that this is the first case of milk = welts he has ever seen and as such he refuses to believe it can be anything other than a skin allergy. I refuse to put my son at risk because of his ignorance but I sense I am now being perceived as an over-anxious first time Mum (I had a similar issue with pushing for referral to dermatology... In the end I won and the cream they gave DS cleared up his skin in 2 days after months of waking up to find him covered in blood from scratching).

Can anyone point me towards something concrete I can use? Tried the NICE guidelines but got nowhere (plus am in Scotland so they take ages to be implemented here and are viewed as optional almost).

I think you might need to insist on being seen by a different gp. You could also go private for an initial diagnosis, then back in the nhs for all the follow up? The welts = allergy seems so blindingly obvious to me that i cant think of any 'proof', that us the proof!

If you don't mind posting whereabouts you are in Scotland (in general terms!) then maybe another mnetter lives nearby and can recommend a gp and/or consultant?

Quick update on phone so sorry for typos . Allergy UK were ace and am all set to take on theGP!

Good luck abigboydidit.

I'm shocked by this Honestly have these people got no sense?!!! My ds2 had a similar reaction to humous (allergy to sesame) the 2nd time he had it he instantly developed red blisters all over his mouth that ran over his face/neck, was very scary, luckily I had piriton, gave it immediately and it started to go down, but I was very nearly having to phone for an ambulance.

My son's paediatrician has said due to his severe reaction (even though the RAST score isn't high for sesame) he should not have any trace of sesame, and will be tested in hospital when he is older, 3+. To put a young baby/toddler through an allergic reaction on the whim of a HV/GP is extremely dangerous! I would be writing a big complaimt of their negligence! Good luck with it all, and well done for taking it further

Nothing to add I'm afraid, but just wanted to say good luck. I'm amazed at how little knowledge GPs seem to have when it comes to allergies considering their prevalence these days. I was also a ridiculously pushy mum when I realised my ds had allergies - I figured that if nothing else, my doctor would be so keen to get rid of me that he would give me a referral just to get me off his case!

Go bigboy go!

Good luck...

Hope the consult goes well OP.

hope you get on ok today OP.
I would agree that if you cannot get them to do the referral then it may be worth getting initial tests done privately if you can afford to. You shouldn't have to, of course, and it makes me cross when people are forced to take this path but getting a diagnosis is really important in this instance.

When ds is all sorted I hope you get your complaining hat on and complain BIG TIME about both the HV and the GP.
they've both given really dangerous advice. imagine if you weren't this on the ball and did what they said and gave milk orally and he had a huge reaction? I mean the worst case scenario simply doesn't bear thinking about does it?

so so glad yu got onto allergy uk to back you. have got shivers reading this.

hope you get to see an allergy specialist soon, dont forget to ask for dietician referral as well, as cutting out a major food source can be pretty daunting and to have a dietician on board is vital.

hopfully yur ds is fine after the drop of milk on his neck. so so glad you didnt give it to him to ingest like the stupid doc and HV suggested.

So! Spoke to the GP & said I'd done a skin test rather than feeding him milk and the conversation went along the lines of:

GP - "that's a shame. We're no further forward until you actually let him eat it. It is just a skin reaction"
Me - "Allergy UK say this isn't a skin reaction and is a severe allergic response and that it is dangerous to give him any more dairy. They say he must be referred to a specialist allergy clinic"
GP - "but he we can't say that while you're still refusing to feed him milk. Give him some orally and let me we'll be in a better position to assess things."
Me - "Allergy UK say this isn't a skin reaction and is a severe allergic response and that it is dangerous to give him any more dairy. They say he must be referred to a specialist allergy clinic"
GP - "blah blah feed him it"
Me - "Allergy UK say this isn't a skin reaction and is a severe allergic response and that it is dangerous to give him any more dairy. They say he must be referred to a specialist allergy clinic"
GP - "blah blah feed him it"...
repeat for several minutes
GP - "you seem to just be giving the same response over and over again Mrs __"
Me - "Yes Doctor, that's because you don't seem to be listening"

So, he reluctantly agreed to refer him to the paed allergy clinic. However he pint blank refused to prescribe me any Neocate (allergy UK said I should get some for cooking with), saying I could buy soy milk instead. I though off-the-shelf soya milk was unsuitable for babies and am also a bit scared of trying him with it as my DH has coeliacs and an intolerance to soya products. Is the GP right or do I have yet another fight on my hands to push for the formula?

Just to add that the Anaphylaxis Campaign is another really useful organisation for advice about allergies. They do loads of amazing work in this area and I'm sure they will be able to give you some advice. They also run workshops for parents that I found really useful. And yes, it is scary how little some GPs and HVs know about allergies in this day and age. My DS has never eaten egg, just dabbing a bit on his cheek was enough for us to know that he was allergic (we only did this because we already knew he was allergic to milk and wheat so didn't want to risk it). I also had to put in a very long letter of complaint to my previous GP surgery as there was a catalogue of errors that put my DS's life at risk on a number of occasions. I was lucky that I could change surgeries as I had completely lost all faith in the staff there and wouldn't take DS there anymore. I hope that my complaint has made them look at how they deal with allergies in future as they didn't seem to have policies in place or even basic knowledge about the issues. Good luck and don't give up. Sadly when you have a child with health problems you are forced to become a 'pushy mum' because you have to fight the system every step of the way to get what's best for your child. I never thought I'd become one of those mums but I had no choice, it was either that or let my child suffer and I wasn't prepared to do that.

well i'm glad you got the referral, though sorry your GP is such a twat!

I only have experience of intolerances (egg and dairy) but in terms of diet it's the same thing... cutting it all out completely.
Personally I didn't ever have formula prescribed, we just used the fortified Oatly for cooking and cereal etc. I breastfed ds2 to 16 months though, and ds3 is still bf at 2.5 so I didn't really feel the need to use a formula in cooking etc.
if you aren't going to be breastfeeding however, I would definitely push for a prescription formula although the person you have been referred to may be able to do this for you anyway without such a fight!