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!

[abigboydidit]

Thanks everyone. That's really helpful. I think it's a 10-12 week wait for the clinic so all weaning advice is really appreciated as I'm terrified reluctant to try him with anything else which may cause a reaction. The GP said he "wasn't an expert on weaning" (glad he's got some insight into his limitations..) which was his reason for refusing to prescribe the formula and he fobbed me back onto the HV..which is where this whole story began!

I just called her and was fairly to the point with regards to what support I felt I needed and (I think she's smelling a complaint brewing) she was excellent and contacted the hospital dietician who will call me over the next couple of days as an interrim measure. For the first time all week, am feeling hopeful!

[freefrommum]

I agree with thisisyesterday re: soya milk. Firstly, it is not recommended for young babies especially boys due to high levels of phyto-oestrogens and secondly many children with milk allergy are also allergic to soya.
You should be prescribed a hypoallergenic formula like Nutramigen as this more nutrients than normal milk substitutes. I know you are bf so this is not such a problem but it is best to try to get them used to the yucky taste as early as possible so if you do decide to give up bf at some point, it's a much easier transition. You might find you will need to mix it with bm to get your little one to drink it at first but they will get used to it eventually. I had to get my consultant to write to the GP to explain that they needed to prescribe hypoallergenic formula instead of soya formula for these reasons: www.bda.uk.com/publications/PaediatricGroupGuidelineSoyInfantFormulas.pdf

[CasaBevron]

Your GP is a twunt. Well done for getting a referral. Keep pushing!

[thisisyesterday]

the soya thing for me was really personal preference. I know plenty of people will swear blind there is no issue with it, but I feel it may have risks and until I am 100% happy that it isn't risky I am not about to use it too frequently.

that isn't to say we don't have soya at all. the boys eat soya yoghurts, and we eat a fair bit of tofu, i just don't want them to have too much and the Oatly tastes nicer (imo) and is better when heated, doesn't split so easily.

soya is bad for the environment too, I believe a large proportion is GM and large areas of forest are cleared for it to be grown, so it isn't just health implications that I am worried about iyswim, although the possibility that it could affect fertility, particularly in boys is just another reason to limit exposure to it.

that's all just my own opinion though... there's a lot of stuff o0ut there on the internet about it, arguing both sides!

[misdee]

well done!

i agree, dont give him soya untill he has had tests to see if he has an issue with that as well. a high % of people allergic to cows milk protein also have soya allergy as well. also dont be tempted to try him with other animal milks just yet.

for cooking you could use expressed breastmilk, or oatly milk.

with regards to breastfeedding, ideally you should start following a dairy free diet. you might also notice a knock on effect of it clearing up any skin issues he has. dd4 eczema cleared completely when i went dairy free and was breastfeeding, and hasnt made an reapparence.

[lukewarmmama]

Well done you for standing your ground! Great you've got the referral, that's often the biggest battle. When you do get to see the consultant, they should also refer you to a nutritionist.

But - to cut the nutritionist's advice right down to the bare essentials - so long as they are getting enough calories from whatever source, and also having another source of calcium at least 3x a day, then no problem (for us, that is unsweetened soya milk 2x a day and 1x soya yog or pudding - all fortified with calcium).

As you are still BF, then you don't need to worry at all at the moment, its all he needs. For mixing with cereal etc, if its not a major part of his diet (ie not the milk he drinks), then you can use any of the alternative 'milks'. Not goats/sheeps milk, as they have very similar proteins so you should treat as if they are cows milk. But oat or soya milk - make sure you get the calcium fortified one.

However - re soya - quite a high proportion of those allergic to CMP are also allergic to soya (I think around 50%). So either introduce carefully, or avoid for now. We never had a problem with it, thank goodness, but it would be a right PITA to have soya as well as dairy ruled out.

If, in the future, you want to stop BF before the age of 2, then you need a specialist hypoallergenic formula eg nutramigen or neocate. They taste vile, but the babies do get used to them if you introduce them gradually. Your consultant can prescribe them. After the age of 2 its fine to use soya or oat milk (fortified).

And well done again for standing up to your ignorant GP. I wish experiences like this were isolated, but unfortunately they are not. I remember taking DD1 into the GP as I thought she had developed asthma, to be told 'we don't like to diagnose them this young, lets wait and see'. A week later she was hospitalised with a serious asthma attack. And I have many more stories like that. Parents know their kids best and the doctors should blooming well listen. Rant over You got the result in the end.

[brighthair]

Sometimes they are just beyond belief. I saw a consultant aged 12, and when I was 25 I asked to be referred again, only to be told I already had been. I asked if there had been no development in medicine over the last 13 years and got my referral
I was anaphylactic allergy to eggs as a baby and stopped breathing several times (mum ate egg not realised and I was BF)
Now not allergic but have cholinergic urticaria which is a PITA and uncontrollable with meds

[abigboydidit]

Fortified Oatly? I'll look out for that - is soya milk a no go then? Plan to continue to BF till he's a year old anyways (work permitting), especially now this has happened but I'd like to be able to give him breakfast cereals etc.

[thisisyesterday]

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!

[freefrommum]

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.

[abigboydidit]

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?

[misdee]

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.

[thisisyesterday]

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?

[RumNoRaisins]

Hope the consult goes well OP.

[lukewarmmama]

Go bigboy go!

Good luck...

[CasaBevron]

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!

[mamasunshine]

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

[TruthSweet]

Good luck abigboydidit.

[abigboydidit]

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

[lukewarmmama]

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?

[abigboydidit]

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).

[JungleJunction]

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

[JungleJunction]

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.

[freefrommum]

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

[freefrommum]

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