Baby allergic to all formula

[georgarina]

My 4 month old is allergic to all formula - soy, regular, lactose free, prescription (sma alfamino).

She's having diarrhoea 15+ times a day, vomiting, a rash all over, and has infected nappy rash.

GP referred to paed A&E where they told me to try and breastfeed (I have no milk) or just keep on the SMA. I told them I can't, I'm literally giving her poison. Asked about milk bank, told no. Asked about allergy testing, they laughed (?) and said no.

Then gave me a prescription for Similac Alimentum which is more allergenic than the SMA I already tried. They didn't seem to understand and said it tastes better.

Where to go from here?

Have a look at Neocate. My friend had a baby who was allergic to everything and this was the only one he could keep down.

Where in the country do you live? There are some milk banks who provide support and milk to women in their area. We had 25 litres from them when DS was a few months old. We also have had a regular milk donor who lives near us, you can find a donor on the Human Milk 4 Human Babies Facebook page if that is the route you wish to go. You'd just need to specify what allergen-free milk you'd need.

Human milk 4 human babies.

Do you know her allergens other than cows milk?

Have they looked into any other potential causes of those symptoms?

It’s so tricky as they can’t test for a non IgE mediated allergy which from the symptoms you describe could be what’s happening. If your baby had an immediate reaction of hives or anaphylaxis they could test using a skin prick test. I’m surprised they won’t try the skin prick given the rash and immediate vomiting as these can be either IgE or non IgE mediated.

It must be so upsetting. Sounds like your baby may struggle with both soy and CMP which is a tricky combo. You could try colief in case lactose is also an issue.

I don’t have much advice other than to keep going back time and again to the GP and ask for referral to allergy clinic and a dietician. Keep a diary of symptoms and have your baby weighed regularly so you can demonstrate failure to thrive if necessary.

Allergies in babies are absolutely horrible and really frightening so you have my sympathy

The problem with milk banks is that the milk from them likely won't be soy and dairy free unless the woman has a specific diet so it may not help.

Can you ask for a second opinion regarding the allergy testing?

@Hippopotamus99 Thanks, I've ordered a tin to see if it will work. Ingredients seem to be largely the same as SMA though so not overly hopeful

@addler Thanks, I am actually a member and am picking some up tomorrow. Bit nervous of the whole thing but amazing that it's an option! And will definitely try contacting milk banks (I'm in London).

@Eileen101 Thanks, I'm a member. I think she must have multiple allergies, potentially to corn as well as milk since the amino acid formulas are mostly corn. I will ask my GP if she can be referred for allergy testing.

@Catfog they did a virus and bacteria screen which didn't show anything. She was fine until introducing formula (which I did for medical reasons so unable to go back too bfing), which makes me think it's allergies

It's an amazing group, we got so much milk from many different women, we had to get a chest freezer to keep it all in. I loved that there was a community of women who had milk going spare, and my baby was helped by all of them. Then even luckier to find a donor not far away who was an over supplier and made a spare litre a day, and her DS was only a couple of weeks older than mine.

Allergens pass into breast milk. I’m daughter is allergic to dairy, soya and coconut so I cant eat these as they make her ill.

Who recommended the lactose free and soya formulas. They’re really not suitable and shouldn’t have been prescribed. Go to the CMPA Facebook page and ask for advice there. It’s really good.

Allergy testing will only pick up iGE allergies. The only way to test for non iGE allergies is to remove the allergens for 6 weeks and then challenge.

Just to add that allergies can just develop when they weren’t there previously. It’s happened to my DS with several things he could previously tolerate so reverting back to breast milk may not work particularly as it’s unlikely those women were following a particular diet (dairy and soy free for example). Sorry to be a doom harbinger- just speaking from experience.

@Fallagain

Allergy testing will only pick up iGE allergies. The only way to test for non iGE allergies is to remove the allergens for 6 weeks and then challenge.

Agree with this, no point asking for allergy testing, even if you do get a referral you'll be waiting months. Better off trying to get the most hypoallergenic formula from GP-try Neocate as a PP said.

Another advocate for Neocate here. GP was quite happy to prescribe in the end. It's quite a thin formula so we were prescribed Gaviscon to thicken the formula and help him keep it down. He also had a prescription for Omeprezole to help with reflux.

I will say it was quite a slog initially getting GP to listen, it was a trip to an out of hours doctor that got the ball rolling for us. He was an amazing man.

If you are prescribed it, do read the instructions, unlike other formulas you don't make it with hot water. If you use a Tommee Tippee machine you'll need to do the hot shot, then the cold shot, then add the formula.

If the reason you can't breastfeed is because you are taking medication, I would suggest looking at the drug information from breastfeeding network. Some doctors are very risk averse and tell women they shouldn't breastfeed while taking almost any medicine. But if your baby is unable to tolerate formula, the harm from carrying on with that might be more than the very small risk of BF ing (obviously depending what drug it is).

www.breastfeedingnetwork.org.uk/drugs-factsheets/

Join the CMPA support group on Facebook, lots of people with multi-allergy babies.

As others have said, ask for Neocate. You could potentially also try the nanny goat formula.

Also make sure you try Alfamino long enough. It can take several weeks for the dairy/allergens to leave you're baby's system. And symptoms can get worse at first.

Dont have much allergy knowledge so sorry if this is a silly suggestion- Have you tried goat milk formula? It's supposed to be much gentler than cows milk base. I think there are quite a few but I've heard of kendamil and also nannycare.

I know it does take quite a while for cows milk to leave the system so you don't get instant results when changing formula.

Sounds like she needs a referral to an NHS paediatric dietitian who may be able to get something prescribed. There are foemulaes that are not available over the counter.

My son was referred when he was in hospital so I'm not sure how you would go about it, but maybe someone will come along who knows

Most babies with an allergy to cow's milk are also allergic to goats milk.

I think as well as these other options suggested I would be looking into ways to increase milk supply. Lucy Ruddle IBCLC wrote a book called relactation which is supposed to be really really good, she also has a Facebook group.

Obviously you should have the option to use formula if you want to but at least it would be something in the meantime (and more constructive than "just breastfeed" when it isn't always that simple!)