I thought I would just share my journey about on cows milk protein allergy and reflux.
We initially got the diagnosis of reflux but the second paediatrician we saw raised the possibility of allergy causing DS symptoms so we went off egg, milk and wheat (I was already off that because of being coeliac). We were told it would probably take about 2-3 weeks to see an improvement if there was to be any and we continued with reflux medication. She described an allergy to one of these products as like having eczema int he stomach. After that time we saw an improvement in the DS being less fussy at the bottle and taking greater volumes of milk. We then reintroduced milk gradually into my diet and it go to the point that he was fussy again. I tried to work out how much milk he could tolerate but it got really hard in terms of me putting up with his symptoms which could last for weeks, so I just decided it was best to eliminate it completely rather than work out the dose he could tolerate. When I reintroduced egg I had no change in his behaviour so now I eat eggs freely. After these trials we trialled coming off the reflux medication which we have done now and we saw no change in my DS behaviour. So, after all of this we are diagnosed with a milk protein allergy and not reflux.
Anyhow, I will always wonder if DS having a milk protein allergy was related in someway to his breast refusal in the first 9 weeks. I was always told it was nipple confusion issue as due to vasospasm I introduced the bottle from birth until I could get the attachment right. Eventually the same refusal symptoms which included not finishing a feed and crying at every attempt at attachment were displayed on the bottle. I will never really understand the cause of the breast refusal and it probably was multi factored. I just wonder if I had have known about milk protein allergy and worked on it whilst I was trying to BF if we may be in a different situation now. I wish the LCs that I saw could have picked up on the potential reflux and allergy issues. I just ended up feeling like a failure with no explainable reason as to why my DS wouldn't feed from the breast. The first paediatrician I saw made me feel like a failure as I was combining breast and bottle and told me I had created nipple confusion and I had to choose a feeding method. The thing was I had chosen and it was breast but my DS wouldn't feed so I had to resort to the bottle, particularly as his weight was becoming an issue.
Anyways, that's all supposed to be in the past...right!?!? Gosh the emotions around BF and inability to BF are always close to the surface even 7 months in.
Last edited by Lisa B; September 28th, 2011 at 02:29 AM.
The role and causes of allergies are not very well understood. And they are on the rise. I would say for sure that your early problems were contributed in part by your baby's allergies.Like many mothers you found the same thing when your baby was on the bottle. Mothers are put under such pressure to put their baby on the bottle - really it solves nothing, as the underlying cause has not been addressed (the same to a large extent with meds - they address a symptom, but not the underlying cause)
Often family history will give you a big clue. When I see a mum with a super fussy baby I always take a detailed history and some of the questions I ask are "Do you or the baby's father have any allergies or intolerances" Often the first answer I get is "no" but then I did a bit.....anyone in your family have eczema, asthma, hayfever, hives, doesn't like milk or certain foods? had these things as a child? Invariably I get some answers.
There are 2 types of reflux. Reflux is just the food (milk) coming out of the stomach back up into the food pipe. We all have it. Worse in babies because the valve in the top of the stomach is just weak and prone to coming open, and because they have low muscle tone (because they are babies) and spend a lot of their time lying down.
The second type of reflux is where a baby suffers fussy, irritable symptoms. It's not really reflux at all, but a response to an allergy or intolerance. (as Lisa described as 'eczema on the inside". Often it's treated with relux meds with little success. Sometimes they do succeed in masking the symptoms. It is very important in both cases that mothers are supported to continue breastfeeding. It is much worse if the baby is formula fed and we see frequently through these pages stories of mothers being encouraged to put their baby on formula only to be on a treadmill of trying different formulas, juggling sleepless nights and reflux meds, and then constant illness as formula fed babes are more likely to get sick than breastfed babies. - not pretty.
Lisa, you need to reframe the situation. These babies are not like everyone else's baby. These babies are high needs. It's a really tough road for a new mother. And those mothers do the best job of keeping themselves and their babies together. There should be a medal - not this constant sniffing about "why you would put yourself through it" Really you've got no choice. And, you got little useful support from health professionals by the look of it. That's dreadful. But you've stuck in all the way. As an aside, in babies with allergies, even if you can't fully breastfeed (I know it's a hard road!) partially breastfeeding will mean your baby will get less infections than a fully formula fed baby. Breastmilk also contains anti-inflamatory properties which help dampen down the allergy.
I strongly recommend Bryan Vartabedian's "Colic Solved"
Yes I have stuck in because in my heart I know that BM is the right way to go for me and my son. My son has been fed breast milk exclusively since 1 week of age (when my supply came in) even though it is via the bottle. I know that I've done the best that I can with the circumstances I've been given. It has been a tough road as a first time mother with a baby that wouldn't feed, let alone experiencing vasospasm and likely Reynards Syndrome. I'm really not sure what I would have done without sites like this and one LC that saw me in hosptial and briefly mentioned her sister that EEed for one of her children. Prior to this I didn't know that there was another option other than formula.
Lisa B your story sounds so similar to mine. Initially I wasn't convinced DS had reflux because it seemed to be more of a behavioral thing, wouldn't attach well, pulled off screaming a lot and wouldn't want to reattach. It all seemed to be before and during a feed and I was told reflux strikes after feeds. (I now know this isn't always the case) and I suspect he was associating the breast with pain. This was from day one and has never really improved. He was simply not taking enough milk from the breast so I needed to give him EBM in a bottle. Around 6 weeks he was started on Losec just to "give it a go and see" and he has improved a lot since then (slow gradual improvement over several weeks), but now he is so used to the bottle he won't even attach to the breast at all. He is still "fussy" with the bottle quite frequently, but now the screaming is infrequent.
Lisa B, how much improvement did you notice when you stopped eating dairy? Am I looking for a subtle or dramatic change? I'm worried I just won't be sure in another few weeks if it's helped or not. (2 and a half weeks dairy free now)
I have an appt with a paed late October (made appt 5 weeks ago and was earliest I could get!!!) so can pick their brain then.
I feel so lost, I just want to do what is best for my boy!
Tell me about your dairy free diet. To give it the best chance of working, you need to be a label reader, cut out all dairy including casein and whey - you need to look in breads, biscuits, baked goods etc. It can turn up everywhere. First you need to remove it. Then you need to allow the gut to heal - it takes different amounts of time. Change can be subtle and it can help to keep a bit of a diary. Sometimes it can be hard to see change, especially when you are there all the time. When you have a *bad day* as we all do, it can be hard to see any improvement at all. Does anyone in your family have allergies or intolerances? Nuts? Eggs? Milk? Shellfish? Eczema? Asthma?
Hi Barb,
I think I'm doing ok with the dairy free. I'm not eating chocolate that contains milk, no biscuits or cakes, I've substituted milk and butter with rice milk & nuttelex and I'm checking the ingredients on everything! It all just seems so wishy washy, I mean, I don't know how long to cut dairy out for, his symptoms may only change slightly and it might be hard to notice!!?? As you said he has good and bad days, so a diary is probably a good idea. This just all seems so vague.
In other news I tried him on the boob again tonight. I hadn't tried for a few weeks because I get upset every time it fails (which is every time I try) but tonight I got him sucking on his dummy then quickly switched it for boob and he attached for a few minutes and had a good suck! Do you think there is any realistic hope I could get him feeding from me now he is 3 months old? I don't want to get my hopes up if it's really just not going to happen.
I hope Barb can give you advice on reattaching on the breast. It would be great if it can still happen for you guys.
When the allergy investigations started happening for me I had stopped attaching DS to the breast. I was getting a lot of messages about nipple confusion and having to choose one method and with my son in the end not wanting the breast or bottle even though hungry I went with what I had the most success with which was the bottle. He never ever completed a breast feed. At this point I was told it was reflux and fussy feeding. I spoke with a fussy feeding nurse at the Children's Hospital and she gave me strategies to manage feed times and this began to make a difference. It was this nurse who first mentioned a possible allergy to dairy/egg/wheat. It took about 2-3 weeks to notice a clear difference with DS feeding behaviour, although with my new strategies I began to notice some changes within days. At the lowest point with my DS feeding he was only taking 20mls every 2 hours from the bottle and on average was only taking about 75% of what he used to take from the bottle. We were referred to a new paediatrician (the first paediatrican told me the problems were nipple confusion and reflux, told me off for using a dummy and said my mixed feeding methods were causing the problems so that's when I decided I would EE. He never enquired about allergies.) who was an allergy specialist and a paediaric dietician. The dietician told me it takes about 20mins for dairy to get into the BM, 2-3 days to clear from the milk but it can take 2-3 weeks for the gut to heal. For me the difference was clear after 2-3 weeks as his feeds over the day were back to 750 - 830mls a day but there was still some fussiness with feeds but the overall volume was back up. Initially we didn't know what was making the difference because I was off egg and dairy, and my son was on Losec. It was only by introducing one product or eliminating the Losec that we nailed it down to milk protein. Apparently some babies can tolerate some dairy, and I think my son can as I introduced a little and he was fine but with a lot he wasn't but I found the fussiness increased my worry and his feeding was hard to manage so I took the simple path of eliminating all dairy.
The other couple of things that the dietician told me which might be of interest. If you are off milk take 2 caltrate tablets a day so you and your bub still get calcium. You need more than the dose on the pack when BF. I'm also taking B12 but I'm semi-vegetarian as B12 is in eggs, and maybe dairy. She also mentioned some kind of research going on about the impact of maternal VitD deficiency and reflux. I'm also VitD deficient so began taking supplements again.
We still have bad feeds which are incredibly fussy but overall the milk volume is where it should be each day. For me it's the volume and crying during feeds that told me we had a problem and the problem was fixed. The fussiness is still there but not to the same extent. I don't get crying anymore when the bottle is put to his mouth or at any point during the feed. The fussiness I get now is more on/off, on/off and often he needs several breaks in a feed. I manage this by putting him down for some play time and treating it like a sports game 1st quarter, 2nd quarter etc. Some days we get great feeds and this is a bonus.
Last edited by Lisa B; September 30th, 2011 at 08:58 AM.
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