pregnant and concerned about baby #2 having milk allergy

[carbooty]

Hi everyone,

Just registered so thanks for having me

I am looking for some advice, and hope that someone has had a similar experience?

brief history, my two and a half year old was breast fed upto a year old. Partly because I wanted to do the right thing and partly due to milk allergy discovered when I was desperate for a break. She wouldn't take the hypo-allergenic milks, because she prefered taste of breast milk. Thankfully she grew out of this allergy at 1 yr.

I am now 23 wks pregnant again and in between have had a mastectomy so breast feeding is no longer an option. I am very concerned that my next baby will have the same problem. I have spoken to allergy UK and they advice I shouldn't even start baby on cows milk formulas, but my gp has a different opinion. I really want this sorted before baby is here and I am worried about what to do is he/she has a severe reaction. I don't want to have to wait and see.

I am lactose intolerant too.

Any feedback is much appreciated.

Thanks
Carbooty

Theres a 50/50 chance the next one could be lactose intolerant. Id advise trying the cows milk formula first. Any signs of allergy, quit using it. Then try the soya version. only use this up until they are 1 as there has been proof of the oestrogens causing cancer later on in life and also premature 'puberty'. My dd has been on the soya formula up until 1yrs and she was fine. But they dont put on that much weight. If you prefer you can try rice milk. I am strting dd on this now.

Was it a double mastectomy? If not, then I'm not sure why breastfeeding isn't an option? That would certainly be my preference.

Both of mine were milk intolerant I'm afraid, although we picked up on the symptoms a lot sooner with ds than with dd.

Your GP prob has his opinion influenced by the fact that he would have to prescribe hypoallergenic milks and they are expensive.

I def wouldn't use soya under any circumstances though. The hypoallergenic milks are much more likely to be tolerated if they are tried from the outset.

my dd had a cows milk protien intolerance, tha was why she was put on the soya. Though as well that id my diagnosis due to the fact my GP never ran any tests and just printed off the prescription.

my friends milk intolerant baby developed a soy allergy when put on soy formula. Soy is a common allergen and its better not to risk in.

On the more positive side - adding probiotics to your diet and giving them to the baby after birth may reduce the risk of allergies. It's been shown to benefit eczema.

Ask your gp about Cow & Gate Pepti Junior which is reduced lactose and may be taken better than nutramigen or neocate.

My experience is that DD (eldest) had no allergies whatsoever, whilst DS is anaphylactic to milk (and also allergic to eggs, nuts and now lentils!) So children can be dramatically different!

Chellesgirl, not sure where you got your 50/50 chance from. Trouble is, with the cause of allergies not yet properly understood it's hard to know if it's genetic (i.e. set at conception) or environmental or somewhere inbetween, and so hard to come up with an exact 'risk factor'. The only info like this I'm aware of relates to peanut allergies:

"Q: I have a child with peanut allergy. Will his young brother develop it?

A: Because there is allergy in your family, there is a high chance that the younger sibling will also be prone to allergies. But these will not necessarily be severe. There is only a seven per cent risk of this second child developing peanut allergy, compared with a 1-2 per cent risk in a child from a non-allergic family."

I found this on the Anaphylaxis Campaign website, it might be an idea to call them and ask their opinion - they've always been very helpful and supportive to me and friends of mine who are also dealing with allergies.

Good luck!

I second CSWS on the maybe still being able to breastfeed if you have not had a double mastectomy.

if you have tho (and I am so sorry to read that), then you don;t have to assume that this baby will be allergic, altho the odds are higher (out of my 5 children, 3 have been allergic).

I was told by my paed that to limit the possible allergy I should stay dairy-free thru my pregnancies (from DD2 onwards as she was my first allergic baby). For me, it made no difference I have to admit, altho DS1 did not develop any allergy so it is not prooof (IYGWIM).

however, I was also advised to never use soya formula for babies under the age of 6mths due to a very HIGH risk of them then developing a soya allergy, which is then worse as if you are allergic to both dairy and soya it is hell to wean and find foods (not impossible, but hell IMVHO).

I was able to breastfeed DD3 until she was 9mths, and then she went onto soya with no ill effects, but with DS2 I wasn;t able to feed him as well (due to other issues), and so he had the hypo-allergenic milk. It really isn;t bad, as much as it might sound it. and for my son it helped (he had other issues and allergies, but thankfully not a soya one).

your doctor is right tho to suggest attemtping cows-milk formula first. it would be a shame to assume with no proof and then find you need not have bothered. it is a PITA having to rely on prescription milk!

you will have an added advantage tho this time. Like CSWS, you will know and recognise the signs a lot quicker, and therefore be able to be proactive in getting help.

congrats on the new baby BTW, and good luck

Thanks for all your responses.

I had a risk reducing double mastectomy due to a family history. Mum, sister have both died from BC, so although sad not to be able to breast feed, feel it was the better choice for my family.

Allergy UK have told me not to even start with a Cow milk formula, they say exposing a baby to the thing it is allergic to before it's system is mature enough to cope could cause more allergies to flare up. But I do agree that on the flip side there could be an element of overtreatment and not to at least try seems a little silly.

I just want to do the best for this new baby. I know I will feel terribly guilty not being able to bf if my baby gets very unwell. I just wish medical proffesionals were more sympathetic, it was a nightmare trying to work out why my first was getting so unwell with a nasty rash over her body. They always say "it is a virus and should clear up soon"

Thanks for reading my post.

Whatever you do, don't feel guilty! You're working your way through a maze that even the professionals probably couldn't, all you can do is make your own choices for your own reasons. I know I got very depressed and blamed myself for DS's allergies - he was an emergency caesarean and was given formula whilst I was still knocked out and getting transfusions. Silly really, it's not like I chose for him to get stuck, and as it turns out his allergies are almost certainly genetic. Plus I didn't have the internet back then, and all this amazing (if confusing!) information wasn't available to me, and my GP/HV, although they did their best, were as much in the dark as me. So I probably (definitely) made some mistakes, looking back - but again, what else could I have done?

I hope that somehow makes sense, don't end up depressed/anxious/panicky - we're always our own harshest critics, I'm sure whatever happens your child will grow up knowing you've done the best you could, what more can anyone do?

Oh and don't forget, if it all gets to you, we're all here on Mumsnet to listen to you vent!!

Best wishes

Hi everyone,

I have now had numerous conversations about the issue of formula when my baby is here.

My hv has contacted my local nhs dietician and gp to work out what to do. Basically there is nothing available to pre-empt an allergy in the NICE guidelines, everything is in place only after you have a diagnosis even when a family history is evident. This is not for my baby's health sake but due to budget restraints. They can not perscribe hypo milk until a diagnosis. My HV also told me I can only get this milk on prescription, but after asking it appears I can buy it through my local chemist!!

I am nervous about having my baby and it getting very sick, because I am told I have no choice but to expose it as soon as it is born. Firstly it takes quite a while to get to know a new baby, will I be able to spot that it is unwell? secondly the experts tell me it is not wise to expose a baby too early as it can kick start more allergies and more severe reactions. And those of you with children with allergies will know how hard it can be to manage at times. Would you do what you can to limit reactions?

As I can buy this milk I was thinking about buying it to start with until it is older and I easily recognise if It is acting out of character, then maybe exposing it when it is a little older? Or I wanted to ask if any of you knew of a less invasive method of testing, such as skin testing for milk allergies?

I would also like to ask if any of you have had a new born who has had an anaphylactic(spelling?) reaction due to regular formula? If so what happened and how did they react?
And also long term after giving regular formula with reactions, have you noticed long term problems?

I really want to have a plan before I am due in July, so any advise would be greatly appreciated.

x

Hi carbooty,

I am also pregnant with no 2 and given DS's long list of allergies I am really concerned about baby no 2 having allergies as well.

It's so hard to know what to do as the advice to avoid things in pregnancy now seems to be incorrect and they are now saying don't avoid things!!

I'm really sorry to hear about your mastecomy, which must make things so much more worrying for you .

You can buy tins of hypoallergenic formula without a prescription and I have seen quite a lot of it for sale on ebay.

I don't think you'll be able to get a prescription for it unless your baby has shown a reaction to normal formula though.

It's a bit of a catch 22 though.

Thanks for your message Trixy,

I can really sympathise with you, it is really difficult I think because still today so little is really understood.

Like you I just want to do the right thing by my baby. I think I may end up just going down the route of trying cows milk formula and crossing my fingers tightly. I knew I would feel sad not being able to BF, but didn't consider these additional worries.

x

carbooty, is your oldest under the care of a paediatric allergist? If so, it might be worth getting his/her opinion on the situation as your GP will be more likely to listen to the advice of another doctor.

An anaphylactic reaction won't (so far as I know) happen on first exposure to an allergen, but may on second. I must admit though having found ds2's dairy allergy (anaphylactic reaction at about 6-ish months) I have often wondered what would have happened if he had been on formula from the start. In our case though, ds1 was on formula from about 4 days old without problems (but has allergies to egg, nuts and a bunch of other stuff), whereas ds2 is breastfed and has dairy allergy and sesame allergy (so far) so it doesn't necessarily follow that siblings will get the same allergies.

Hi AM,

My first was never refered to anyone other than to a paediatric consultant. He told me her reaction wasn't severe enough and as I was BF successfully there was no need to follow up. I find alot of doctors really don't want to help these days, you have to demand attention, which is very frustrating.

It is really good to hear about so many different experiences, I feel a little more reasured that we could still be okay.

Will go back to my GP soon and discuss what my partner and I have possibly agreed what we want to do.

I think I may buy the hypo milk to start with, until I feel confident I know my baby well enough to tell if something is wrong.

Thanks for the advise

I am quite outraged that ebay are allowing people to sell baby formula -- i.e. make a profit on someone else's ill health. (obviously from people who got it in the UK on NHS prescription).

Passing on a prescription is one thing (unopened tins) but to profit out of the NHS is really unethical

It is outrageous, which is why when i was considering selling mine on ebay i was planning to give any profit to charity.

i suppose they wouldn't be able to distinguish between whether people had got it on prescription or not though.

yes if I have any unopened tins of neocate I will sell on e bay and donate to charity or offer on MN.

I really struggled to get it prescribed for her and would like to help anyone in same situation TBH.

My chemist says one small tin of neocate is £30 so you can buy that over the counter too.

OK, I got some info today regarding recommendations for FF "high-risk allergy infants". European Academy for Allergy and Clinical Immunology (EAACI) recommend that if one first degree relative with documented allergic disease, then use formulas with documented allergenicity (e.g. extensively hydrolysed) for at least 4 months.

Thank AM,

Your a star, will have a look.

CB
x

Did your child have milk allergy or milk intolerance? How did they react?

Anaphylactic reactions to milk are extremely unusual in babies, most reactions are rashes or digestive upsets.

You can buy lactase drops for babies which will help if they have a problem with lactose.

Could you afford a private consultation with an allergy specialist?

Tatt- Anaphylactic reactions are not that unusual in babies - having got one who is anaphylactic for milk and honestly it is scary to see. Approximately 2-7% of babies have a milk allergy (not a lactose intolerance) and a baby who has ezcema plus a sibling with an allergy has approximately a 50% chance of having an allery themselves.

Lactose intolerance on the other hand is extremely rare in babies and if babies have a true lactose intolerance they will not thrive from birth because even human milk has lactose in it. BTW allergy specialists will not normally deal with lactose intolerance as this is completely different from an allergy. An allergy is an immune reaction whereas lactose intolerance is caused by absence of the enzyme lactase which breaks down lactose in the body. Many children with milk allergy however do go on to develop secondary lactose intolerance as lactase is produced on a supply/demand basis so when dairy is removed from the diet and the child stops breastfeeding they are quite likely to stop producing the lactase enzyme.

Hi Girls,

AM how did you find out so much about this?? I am v.impressed.
We have been considering a private consultation, seeing my gp next week. Would anyone know how to go about finding someone? Or if I would have to still have a referal?

I don't think my first was intolerant as she had a vivid red rash from head to toe, and was generally unwell. Whereas my intolerance just gives me a painfull bloated upset tummy.

Saw my midwife this week and she thinks I should start right of with regular formula, then she started telling me about the babies she has seen who have a milk allergy from birth and how sick they became!! v.sensitive.

I was also really hoping for a home birth this time, but if I start this formula I would definitely want to be in hospial.Just another consideration.

carbooty - I have a child with nut allergy and family experience of lactose intolerance. So you learn from the consultants you see, the Anaphylaxis Campaign, other families with allergy and published research.

You need a referral to see someone privately but most gps are happy to refer. If yours isn't then phoning the consultant's secretary should sort the problem. What's your nearest large town as someone here may have seen a good consultant? You can check possibilities here www.bsaci.org/ but not all see private patients. There is also the Surrey Allergy Clinic www.allergy-clinic.co.uk/ - I haven't used them but like their website

AcademicMum - what's the source of your figues? You're obviously not quoting figures for anaphylactic reactions to milk, they are rare. Total milk allergy figures might be that high but most of them wouldn't be anaphylactic.

carbooty - I have a phd in biochemistry and I am a University lecturer who teaches both medics and pharmacists.

Tatt, you are right that these numbers are for general milk allergy not anaphylaxis, however that is because it is impossible to put a figure on this. Just because someone did not have an anaphylactic reaction the last time they came in contact with an allergen does not mean they will not next time. I found this out with my ds2 who went from a bit of a rash, vomitting on first exposure to milk to anaphylaxis on the next exposure. The basic difference between an intolerance and an allergy is that an intolerance is not a reaction involving the immune system, but an allergy involves the immune system and can be potentially life-threatening.