Please help - I'm in a total mess

[Heliwebb]

Hi all - this is my first time posting here. I'm really hoping someone can help me. I'm in a total mess. My daughter is 9 months. She is dairy and egg intollerant and has reflux. From 8 weeks old, I have expressed all her milk for her because my letdown was so fast it choked her and she used to vomit entire milk feeds. She is also on Gaviscon and I found it didn't work unless it was mixed with the actual milk. I now desperately want to stop expressing because I am SO tired of it and my milk has almost completely dried up. I don't know what to give her instead. I don't want to give her soya because there is so much evidence now that soya is bad for you. I obviously can't give her cows milk. She won't drink formula no matter what. The ideal scenario would be if I could get her to breastfeed because this would stimulate my milk supply again but she won't. What should I do? I'm so confused! My HV is completely and utterly useless. Any advice at all would be brilliant.

[EmmyLou]

no advice really but feel for you! Will bump this tomorrow if no one picks up on it tonight.

[tatt]

have you tried asking on the breastfeeding board/ contacting an NCT breastfeeding cousellor? If you can face letting her get hungry then she probably would either breastfeed or take formula. Have you tried a nipple shield as that might seem more like having expressed milk? The reflux could be caused by milk in your diet.

Sorry not much help.

[moondog]

Yes,post again on breastfeeding section,otherwise might be missed....

[Twilighter]

Have You given up dairy and eggs whilst breastfeeding her??

[Heliwebb]

Yes, dairy and eggs in my milk aggravate her reflux so I avoid them. I have also posted on the b/f board too now. I hadn't thought of the ABM - I will ring them tomorrow and see what they say. I have tried waiting until she's really starving but when I've put her to my boob, she's just looked at me like I was mad!

[Twilighter]

Sorry, not too helpful there... If you are continuing to eat eggs and dairy products, the proteins will pass into your milk, affecting your dd.

Have you had a referral to an allergy specialist, or at least a paediatric dietitian? You will be able to get a prescription for a non-soya based hypoallergenic formula, although if your dd will not take formula, it's unlikely these would work as they are notoriously unpalatable.

It sounds like your having a tough time, try to tackle one thing at a time. I didn't want my dd to have soya either, but in the end I relented as I didn't really have any other options, I'm just careful about how much she has.

[prince]

Gaviscon should be mixed in with the feeds so I don't understand why the gp didn't explain that. There is something called thick N easy that is available on prescription which thickens the feed and is helpful in reflux, there are also some other medication that helps alleviate reflux (you need to see your gp or paediatrician to get it dispensed)Keep mithering your gp for a referral and you should be able to sort this out. Will your little one take breast milk in a bottle?

[tatt]

if you mix breast milk in with pepti junior (get it on prescription) she might take that. But try a nipple shield first, it might get her back on the breast and that would be better. I'm assuming she has her expressed milk from a botle so a plastic shield would be more like what she's used to.

[clerkKent]

DS (a long time ago) was raised on powdered goats milk. See this .

[Belo]

bumping for an expert to come along...

An 'aquaintance's dd had a milk (dairy) allergy at birth which she grew out of. Hope the same happens for you. Apparently it is common.

[lulumama]

see breastfeeding counseller, lactaction consultant...IF YOU WANY TO CARRY ON BREASTFEEDING _ GET SPECIALIST HELP!!! we'll keep an eye on thread and bump until b/f expert comes along...don't give up! help on the way (((HUG))

[USAUKMum]

I would try getting a counsellor out to see you. When you say she won't breastfeed, do you mean she doesn't latch on, can't latch on, does latch but doesn't feed well??

My DD's best friend was allergic to milk and eggs. She was raised on Rice Milk. BTW, she outgrew egg allergy at 3, and just "passed" her milk challenge after a neg blood test -- so has outgrown milk at 5.

[sallyrosie]

Hi Heliwebb: hope that you're feeling a bit better. My DD was also dairy intolerant and egg allergic so I can understand how you feel, it is exhausting and it is a nightmare to adjust your diet as well. Make sure you're eating properly as this will affect your milk supply (as well being stressed out about it all )
What formula have you tried - presumably has been prescribed - they are all vile and I never managed to get DD to take them although some people have success with milkshake flavouring so maybe worth a shot? Will she drink from a beaker or a cup rather than a bottle?
Seeing a dietician might reassure you that her diet is ok so could be worth doing.
If you want to continue BF then persevere with putting her to the breast - maybe trying nipple shields or expressing a bit of milk onto the nipple to encourage her?
If you're finding it hard to express have you tried expressing on one side while putting her to other boob (even if she just lies and looks at it!)
Really hope you manage to get something sorted out.

[tatt]

one of mine can't have soya milk either. It's more common than not for milk allergic to have trouble with soya. Wouldn't risk it with a young baby as it's use is linked to nut allergy.

[Heliwebb]

Thank you everyone. I talked to a couple of b/f counsellors today and the general feeling is that at 9 months old, it really would be an almost impossible task to get her to b/f if she doesn't want to, and the truth is, she REALLY doesn't. I went to see my GP today and he told me that at this stage, it isn't so crucial that babies get milk. This seemed to me a wierd thing to say but he was really adamant that as long as she gets enough fluids (she loves water) and I try to get other sources of calcium into her then he didn't think there was a problem if she only got a little ebm. He has referred us to a dietician as well which is great. But does anyone else think this sounds...odd for a GP to say - about the milk thing I mean?! It's my understanding that a baby MUST have at least a pint of milk a day. She only gets around 10-12oz at present.

[USAUKMum]

The pint a day is to ensure you are getting enough calcium in the diet. My GP always said a pint or equiv in cheese, yogurt etc. In the UK rec. level is around 300 mg. My DD BF's mother checked this out with her dietian when her DD had her check up this summer. As none of our children are hot on milk drinking !

[livelife]

the best advice here is mixing the breast milk with pepti junior formula(ask the doc for a prescription) then slowly decrease the amount of breast milk. worth a shot. wouldn't advise goats milk because the protein is similar to that of cows so there is a big chance she will start to react to that too. soya formula aint such a bad option but many allergic kids do develop allergies to it so fair enough if you want to avoid it. rice milk has no goodness for babies but is maybe a good stop gap if, and only if, there is enough nutrients in the rest of her food.

[sallyrosie]

Minadex syrup has calcium and iron in it and I used it to top up my DDs diet. It tastes nice (orange) so was easy to get it into her, can buy it in supermarkets. Pint a day just about calcium.

[Frederique]

Milk is not that crucial at her age if she has other dairy. My son is allergic to cows' and to an extent to goats but will have gallons of live yoghurt with no side effects, which the GP recommended.They get used to the sour taste very quickly, if you first give it to them when they are very hungry, because it has a sloppy/wet texture which they can swallow very quickly. My other son stopped milk completely at 1, he is now 7 and the tallest in his class! I used to give him calcium supplements in OJ and goats yoghurt.HTH

[Heliwebb]

My daughter can tolerate sheeps milk yogurt just about but because it's so acidic (I assume that's what gives it its sour taste?) it aggravates her reflux very badly and she gets very acidy and seems to be uncomfortable. so we can't win! I'm going to look for minadex syrup in the high street now. She absolutely refuses to go anywhere near my boob nevermind latch on so I'll have to carry on expressing. Thank you all for your kind advice and support.

[DettaJnr]

Have you tried to address the reflux with osteopathy? I found it wonderful for DD1 and espectially for DD2, who also has a dairy intolerance. Hope this helps.

[tatt]

milk does make reflux worse. I'd ask the gp for a prescription for pepti Junior and start mixing that with the expressed breast milk. Start with small quantities and work up. She will grow out of being milk intolerant - you may want to try lactase enzyme as that allows some milk intolerant people to have milk. One childrens source below

66.102.9.104/search?q=cache:SeqqB9TeBhEJ:www.positivehealthshop.com/itemdetl.php/itemprcd/BIO-12415+%22+liquid+lactase%22+baby&hl=en&gl=uk&ct=clnk&cd=8

[plb]

I was also going out of mind with my first when I discovered she was reacting to my breast milk and needed to be weaned as quickly as possible to a hypoallegenic formula at around 8 months. I also had to do the same thing with my second. Did your HV or doctor suggest that you mix your breast milk and the formula, gradually uping the amount of the formula? So start with 1/4 formula to 3/4 b/milk? Also has anyone mentioned to you that Neocate (this is the hypoallegenic formula we use) comes (or it used to, I haven't checked recently)in a banana flavour which was more palatable.

Both of mine were reluctant to make the change but I cut back on their solids a little bit and fed them only when they were hungry! Bit mean but I was very desperate. The first had eczema and if you didn't stop her would scratch until her skin was a bloody mess. She also had reflux and terrible colic. The reflux disappeared once she was fully on the hypoallegenic formula. The eczema dramatically improved within a month of being on the formula and had virtually disappeared within 3 months.

A friend now also has a child who is allergic to dairy and soya. Nothing could induce him to drink the prescribed formula or take a bottle (although he would drink water from a beaker). In the end she was referred to a state registered paediatric dietician who recommended her doctor prescribe a liquid calcium supplement (can't remember its name) and liquid vitamins. She weaned him by the time he was a year old on to water and very diluted fruit juice to which she added the supplements. He is now 3 years old, has never drunk milk and is very healthy! Hope this helps.

[plb]

Sorry to add more after posting such a long message! but just remembered something else. I used to add a little bit of the hypoallegenic formula to their solids. So for example baby rice mixed with pureed fruits and a little of the formula for breakfast. Just to help get them used to that very individual taste! and to sneak in a bit more milk because I can't say how much I loathed expressing by this stage!