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Urgent advice needed for allergic bf baby

(28 Posts)
hobnob57 Thu 14-Feb-13 15:35:53

Dc 3 is following in the footsteps of his siblings and being intolerant to things in my diet. I have excluded dairy and wheat. His reflux seems to be more under control but he is regularly having slimy nappies with 'bits' in and terrible wind which is keeping us up every hour of the night. He is 4 months old.
I contacted the dietician at the children's hospital since I have had previous connections there and sent her a pic of the kind of nappies we have been having. She showed a gastro and they want me to go in tomorrow to discuss things. The thinking is the bits are blood, indicating an allergy but they are very reluctant to advise any more dietary exclusions, and would prefer instead he went of hypoallergenic formula to find out if it is allergy.

I am really reluctant to do this! With dc 2 I was excluding lots from my diet and I was fine other than bruising more easily. I bf the other 2 for a year each.

What do you think/ experiences? Any reading I can do on the relative benefits/risks of continuing bf? sad sad sad

I don't wish to sound defeatest but if you were bruising more easily you weren't as fine as you thought. There could be many things he could be allergic too all of which would still be present in your system and through breastmilk for weeks after you stop ingesting. If the allergy is severe in your baby then there could be damage being done in the mean time.

You could privately hire a nutritionist to see if together you can work out a diet that is balanced and calorie rich enough for u and your baby. Or you can try the milk. It will be clear soon after if the milk is helping or not and if you keep up expressing in meantime you can keep supply up .

I'm honestly not trying to talk you out of bf by the way I think continuing with more than one or two dietary restrictions is really good going. Just you need to stay healthy to be able to deal with all your beautiful dc.

Noodled Thu 14-Feb-13 16:01:04

Formula that tastes funny or your bm? Health benefits for you both to feeding unless you don't want to do so. There is no immediate crisis and exclusion of soya the most obvious choice.

greenbananas Thu 14-Feb-13 16:07:29

the NICE guidelines say mums who are breastfeeding children with allergies should be given information about exclusion diets. Your consultants should not be undermining breastfeeding. Sorry can't link to guidelines as typing one fingered on phone but Google should provide...

Could be worth keeping a diary detailing what you eat along with any change in symptoms - this might help pinpoint culprit foods and will also send message that you are serious about continuing to breastfeed if you can.

So sad you are going through this again sad

hobnob57 Thu 14-Feb-13 16:54:47

Thanks for advice, am keeping up with thread but rl hectic on Thursdays. Back later.

hobnob57 Thu 14-Feb-13 18:27:57

Anyone know anything about protective effects of bm for gut flora vs allergic damage to gut lining? If I get a second Ill dig out Brostoff and Gamlin.

OHforDUCKScake Thu 14-Feb-13 19:46:47

I really honestly feel your pain. Im bf a 20 month old, he feeds every 1-2 hours (he feeds more but my boobs can only give out milk every 1-2 hours).

He wakes every 30-60 minutes at night, his nappies are slimey. We're both exhausted.

I need to go back to the drawing board, I wonder if its my having soya.

Anyway, I digress. I just wanted to relate, so you're not alone. Its SO hard isnt it?

What have you elimimated?
To give up bf is very bad advice. He is reacting now, but you will get to the bottom of it. All the time he is reacting, your milk is still doing all the good things for him, antibodies, calcium etc etc

Formula milk wont help him in the way bm will, formula will just postpone you finding out what he is intolerant/allergic to. This way you're pushed to find out sooner, and he'll still be reaping the benefits of breastfeeding.

OHforDUCKScake Thu 14-Feb-13 19:49:03

WRT gut flora, thats pretty much buggered once they have the nasty nappies etc.

There are several ways you can restore gut flora, one being probiotics. Unfortunately we never found that they helped.

hobnob57 Thu 14-Feb-13 20:31:32

Soya is definitely a baddie, and along with cows milk is the only thing they are happy about me eliminating. I rarely have it, but it is in the chocolate bit if my hale and hearty flapjacks and I think is disguised in gf bouillon powder. It was Thai curry which he has had the worst reaction to, but can't see anything obvious in the paste label to attribute it to. I'm happier doing eliminations than formula for many reasons - I believe bm is amazing stuff, the comfort of feeding is really important for both of us, and the thought of trying to settle a baby during the night between feeds or even making up a feed in the night makes my blood run cold. There aren't enough hours in the day or places on my work top for bottles in my life. However, if it is clinically necessary then I suppose we would manage but he is thriving otherwise, just never sleeps or is truly settled.

OHforDUCKScake Thu 14-Feb-13 21:23:38

Good for you. Its too common on here to see threada from bm mums being told to stop bf and considering it because HCP's have given them terrible advice.

If taking milk out hasnt worked, Id try wheat then eggs.

Avoiding the obvious, nuts, shell fish, spicy curries.

It sounds as though you are pretty clued up though. My DC has already woken up once, if he wakes before 8.30 I can guarantee a horrific night.

<sigh>

hobnob57 Fri 15-Feb-13 09:48:53

My allergy and intolerance book underlined to me that factors in bm help the baby's immune system to tolerate food proteins when weaning. Definitely not doing formula, but they may suggest it short term to get his gut to heal. Then there is the issue of him remembering how to feed.... Still prefer to slog it out. I'll see what they have to say this morning.

hobnob57 Fri 15-Feb-13 15:36:44

Well we were there all day but didn't get seen by the gastro due to a medical emergency. Had to sign a form for discharge against medical advice so that I could collect my kid from school sad 3 year old did amazingly well. Awaiting phone call for rescheduled appointment.

greenbananas Fri 15-Feb-13 17:28:28

Such a shame that you weren't seen today... although, looking on the bright side, it gives you a bit longer to identify problem foods and then perhaps they would be less likely to recommend formula.

I don't think the actual research around breastfeeding vs formula when children already have some allergies is very compelling (have never found anything good), but there's plenty of evidence that breastfeeding is generally good for the immune system. Wish I was an expert on this!

When DS was a very little ebf baby, I basically lived on chicken, broccoli and rice for about 6 weeks, adding one food back into my diet at a time in order to figure out what he was reacting to. I hadn't had much support from health professionals - one doctor had told me that I might need to 'put him on formula' but I had never heard of neocate and was terrified that a cows milk based formula would kill him. Obviously I am not exactly recommending this approach, but I would do it all again if I needed to... fortunately I had great support from my local Breastfeeding Network and learned much more about breastfeeding children with allergies from them than I did from the hospital dietician and the eczema specialist!

Good luck with all this...

RedKites Fri 15-Feb-13 17:41:16

I don't know much about allergies, but I have seen recommended on another thread this elimination diet on the Dr Sears website. It's quite extreme, so may not be what you are looking for, but might give you some ideas of foods that might be the issue.

hobnob57 Fri 15-Feb-13 20:07:44

Thanks for the messages. I've heard of the elimination diets so am a bit surprised that the dietician and gastro (allegedly) are very against eliminating more than dairy and soy. We did see the dietician and she said they would reluctantly agree to no longer than 2 week trials. I asked about the bruising and she didn't think that was much to do with anything dietary. So not very sure what they are afraid will happen if I cut more out. I was dairy, soy, wheat, egg and nut free with #2.
Wee one's nappies have been much better today, so food diary starts here. They took a nappy away for a stool sample to look for viruses and forgot to give it back (real nappy) so I'll need to go and collect it at some point! It'll be nicely festered by then...

hobnob57 Fri 15-Feb-13 20:10:36

Oh, and dietician got my message about not giving up bf. even a trial of neocate involves expressing which I really cannot find it in my heart and schedule to do, expecially when, like OhforDUCKSsake, he is snacking feeding every couple of hours round the clock.

MagratGarlik Thu 21-Feb-13 00:24:42

The research generally shows that breastfeeding does not protect against allergy.

(I say this as someone who is v. pro bf). But, you must consider your own health too. When research does not show doc's will have any beneficial effects from bf in terms of allergy, you really should think of the benefits in terms of your own health and the benefits of you being healthy on your DC's.

I bf ds2 who is allergic to dairy, nuts and all legumes (beans, peas pulses etc). I am also vegetarian and have been for years. The effect of an exclusion diet on my health probably has permanent effects.

greenbananas Thu 21-Feb-13 13:26:20

The research generally shows that breastfeeding does not protect against allergy.

As I understand it, the evidence is contradictory, and some research has been funded by formula manufacturers and the baby food industry. Given the controversy, the NHS have withdrawn 'protection from allergy' from their list of the many benefits of breastfeeding (see here ) but they still say that breastfed babies have less chance of developing eczema.

An Australian study appeared to show that ebf babies were at slightly greater risk of developing allergies - there is an Australian newspaper report about it here - but many experts disagreed with the conclusions drawn from the evidence.

It would be a bit premature to stop breastfeeding just because of one or two slightly suspect studies into possible links with allergy. The general benefits of breastfeeding are widely documented.

I had no breastfeeding support at all from the medical profession when I first noticed my baby was showing signs of allergy, despite the NICE guidelines saying that I should have been given advice about exclusion diets. My own exclusion diet was pretty extreme for a while, and I did it without the knowledge or support of any health professionals.

Until dieticians and allergy specialists start supporting breastfeeding mums a little better, exclusion diets will continue to be seen as weird or extreme. It is possible to follow an exclusion diet and be healthy, but mums who choose to follow exclusion diets without medical support are at risk of being very poorly nourished themselves (even though they will still make nutirionally adequate milk for their babies).

The phrase "you have to think of your own health" still makes me grind my teeth, even after four years! I would gladly sacrifice my own health to keep my children safe! However, I was careful to eat a balanced diet despite the restrictions, and my long-term health is fine (I still eat the same restricted diet as my allergic DS).

Sorry this is such a long and rambly post - it winds me up when people say that breastfeeding is bad for allergic babies!!

greenbananas Thu 21-Feb-13 13:27:31

hobnob how are you getting on? Have you had news of another appointment yet?

hobnob57 Thu 21-Feb-13 16:57:39

No news yet, which I take to mean that the stool sample was negative and it is probably allergy. Lo is still windy as anything but poos are settling down, less mucousy and fewer bits. I'll keep a food diary and work it ut for myself I think. The gastro has no real help to offer me from experience so I'm not worried about chasing up the appointment.

MagratGarlik Thu 21-Feb-13 19:52:01

Greenbananas - I did not say breastfeeding is bad for allergic babies. I said that research does not show breastfeeding protects against allergy. This is an entirely different statement.

Jayne266 Thu 21-Feb-13 20:06:53

I was allergic to breast milk as a baby and had to go into a soya formula.

Seriouslysleepdeprived Thu 21-Feb-13 22:34:52

DS is allergic to dairy & soy & I exclude these from my diet. I am also a coeliac, so I'm gluten free too.

I have found soy the most difficult to cut out. Soy lecithin are in pretty much everything and DS reaction more to soy than dairy.

I had been eating sainsburys GF oats not realising the label said they may have been contaminated with soy in the manufacturing process. He was having terrible nappies just from this. Same with the soy lecithins. Could the Thai curry have soy in or been contaminated?

When I saw an allergist for DS he berated me for not introducing neocate. He said they usually advice women to stop BFing once they are excluding more than two things from their diets, as their milk is no longer nutritious enough. He then blamed my inferior milk quality for DS's poor weight gain, which really pissed me off.

I have been meaning to send him some research to refute his crap advice but can't really find anything. It really bugs me he is telling people this rubbish.

greenbananas Fri 22-Feb-13 10:30:51

He said they usually advise women to stop BFing once they are excluding more than two things from their diets, as their milk is no longer nutritious enough. He then blamed my inferior milk quality for DS's poor weight gain...

As I'm sure you know, your body will rob itself if necessary to produce nutritious breastmilk for your baby. This website is a good place to start for references. I do think you should make a formal complaint about what this allergist said - maybe that way he will get some training, and you will help to protect other mums from being given this scandalously bad information.

It makes me so mad that allergy specialists routinely spout this kind of total rubbish about breastfeeding. It also worries me that so many of our leading allergy specialists do research and give lecture tours etc. funded by the manufacturers of Neocate. (This is a problem with most formula manufacturers - they are not allowed to advertise directly to mums, but they do provide information and samples to health professionals, e.g. the manufacturers of Aptamail provide free training about breastfeeding for midwives and heath visitors.)

Also, because hypoallergenic formula is classed as medicine rather than as food, the manufacturers are able to get around the rules about promoting formula to breastfeeding mums whose babies are less than 6 months old (this is illegal for normal formula, which is why we see so many adverts for similarly branded 'follow-on milk' on our TVs).

greenbananas Fri 22-Feb-13 10:36:51

And sorry MagratGarlik I wasn't getting at you in particular blush It must have been very hard for you to avoid so many foods as a vegetarian.

Not surprising that your long-term health has been at risk with your food exclusions. I too am avoiding eggs, dairy, nuts and pulses (with some other allergens as well) and I used to be vegetarian before I had DS, but I have decided that I must cook and eat meat now because I just don't know how to get enough protein otherwise.

hobnob57 Fri 22-Feb-13 16:27:55

Why oh why is soy not listed as an allergenic ingredient if it is such a common problem? angry

hobnob57 Fri 22-Feb-13 16:29:10

I'm beginning to wonder of his 7 week cold and 3 week cough has anything to do with all of this..

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