Need some advice on lactose/cow's milk protein intolerance ...

[garethstewart]

My little girl Lara has had fairly severe wind problems ever since she came off breast milk at about 6 weeks old. We started her on SMA Gold, but she was suffering really bad cramps due to wind in her bowels, and so we decided to try Aptamil Easy Digest - same story. We also had her on Infacol at the time on the recommendation of the Health Visitor, District Midwife and doctor, but it wasn't making a pick of difference. Then an odd rash started to appear all over her; it started on the outsides of her knees and elbows, and slowly spread across her entire body. At the same time her feeding was diminishing rapidly, only taking 13 or 14oz per day (at 10 weeks old). Obviously this got us worried, so we got an emergency appointment with the Health Visitor, who took one look at her and said "that's eczema, and she's lactose intolerant".

So, we moved Lara on to Cow and Gate Infasoy, got Diprobase cream and something to put in her bath, and she started to make a fairly speedy recovery. But ... the doctor then advised moving her to SMA Lactose Free formula instead of Cow and Gate Infasoy, mentioning something about long term use of Soya milk based products not being a good thing. It's now a couple of days since we switched her to SMA LF, and already she's getting severe cramps and her skin is starting to break out again.

I've done some reading up on this, but I'm not too sure if I've got the jist of it - maybe someone could keep me right. Essentially most baby formula is based on cow's milk, which contains lactose and proteins that commonly cause allergies. Soya milk doesn't contain the same proteins as cow's milk and is lactose free ... so maybe Lara's problem is two-fold; lactose and cow's milk protein intolerance? And in that case SMA LF is no good as it still contains cow's milk proteins (as far as I know).

Does this sound about right, and can anyone see any other angles I might be missing? We have an appointment with the doctor tomorrow, but I'd like to have as many questions to ask as possible.

Thanks.

[Mashi]

Yes - you are understanding everything perfectly.  I agree with your doctor about the long term use of soy not being godd, although this issue sort of split 50/50 even across the medical community it seems.

What I am surprised about though is that the doc automatically assumed lacotse and not cow's milk allergy.  And, many many babies are allergic to milk AND soy as well.

I would ask your doctor tomorrow to trial Nutramigen - hypoallergenic milk.  It is also lactose free.   In fact, I wouldn't ask, I would be pretty firm and insist.  But that's me - I'm pushy with docotrs!

Gotta run, sorry hope that helps!

[Mashi]

OK - I'm back. Sorry, my dinner was ready and I knew DS was going to wake in a bit so I had to type on the fly and quickly!

What was it that made the health vis decide that your daughter has lactose intolerance and not a milk allergy/intolerance? Did she say?  Although many HVs have practical experience with this, through working with babies who have milk problems, I don't believe they are trained at diagnosing problems with milk in infants.  And, sadly, neither are most GPs.  I am very surprised that your doctor just accepted the HV's word for it that it is a lactose problem - is that what happened?

It does seem like she may have a milk protein allergy or intolerance.   Infant formula is made from cow's milk, which contains lactose (milk sugar). Lactose intolerance in adults is common but in infants is very very rare.  More common in infants is an intolerance or allergy to the milk protein.  Soy formula is not made from cow's milk, but made from soya beans and so contains no cow's milk protein nor lactose, as lactose is milk sugar.  Many babies intolerant or allergic to cow's milk are also allergic to soy -- the term MSPI is milk/soy protein intolerant. (Only a very minor diff between allergy and intolerance - allergy is an immune system reaction, intolerance is a digestive system reaction.  Doesn't really matter if DD is allergic or intolerant, solution is the same - eliminate it). 

Hydrosolate or hydrolyzed formula (Nutramigen, Alimentum) is made from cow's milk but the proteins are extensively broken down so that the body does not have to do the digestion and is suitable for almost all babies who are allergic or intolerant.  It is also lactose free.   Some babies can't tolerate even the tiny bit of milk protein that is still in these formulae and so they need to move onto an elemental formula (such as Neocate) where the proteins are FULLY 100% broken down.  Usually babies are trialed on a hydrolyzed formula first.

At your GP appt tomorrow I would do two things - first, request a script for Nutramigen, explaining that you think DD is reacting to the milk protein.  See what GP says - many GPs are hesitant to prescribe. Secondly, firmly request a referral to a paediatric gastroenterologist. Paed GI will be better at diagnosing lactose vs milk protein problem and more likely to prescribe specialist formula.    If your LO has a prob with milk, most GPs would automatically (or should, IMHO) refer you to a specialist anyway. 

We found Diprobase actually made my son's eczema worse - my HV prescribed it, HVs seem to love it!  My GP gave us a script for Aveeno - just the plain old Aveeno lotion that you can buy in Boots - and coupled with the Nutramigen,  DS's milk-induced eczema cleared up very nicely. 

Do let us know how you get on!  Be as firm as you need to with your doctor and take with you a notebook with symptoms, reactions, photos, descriptions of poop, EVERYTHING you can think of, to back up what you think. A lot of docs try to brush parents off as worriers over nothing, but it's much harder to do when armed with eveidence!

hope that is of some help?

[garethstewart]

A great help, actually.

Yes, our doctor's does seem to be a little off-hand about the whole thing. Asked a few questions as to why HV thought it was lactose intolerance, but said that he didn't know of any proven links between that and eczema, and was fairly sceptical. Didn't mention cow's milk protein intolerance at all (I'm pretty sure it's an intolerance, not an allergy).

Thanks for all your advice - we'll definitely press for Nutramigen to try in the meantime, and ultimately push for the referral, too. And I think we'll pick up some Aveeno too, just to see if it helps more than Diprobase, which seems to be losing ground fast now that she's back on formula with cow's milk protein.

Thanks again!

[Spectra]

I totally agree!  My son has an intolerance to the proteins in milk and soy, some doctors do call this an allergy, but it is an intolerance.  The main reason I knew something was wrong was that my son gets eczema when taking milk/soy.  It started on his face, spread to his arms, hands, legs, and feet.  This never went away until I got him on Neocate.  I tried soy milk but it made no difference.  Some babies though only react to milk proteins and not soy proteins.

Eczema is a very common symptom for this intolerance.  I hope things go well at your appointment.

[Mashi]

The difference between allergy and intolerance doesn't really matter - an allergy is an immune system reaction, and it tends to happen quickly -- as in, symptoms very soon after drinking the milk -- and usually involves the skin, although often has digestive symptoms as well. Intolerance can result in reactions that take a while to develop -- hours to days after drinking the milk -- and involves digestive troubles, like tummy aches and icky poops, although can have skin reactions as well.

Whether it is allergy or intolerance is totally irrelevant - either way she can't drink the milk. Many doctors use the term interchangeably. My own paed said that he always uses the term allergy because people tend to take it more seriously, not just parents but teachers, friends, etc and make sure to avoid the substance, whereas when you say intolerance many people wrongly believe that "a bit won't hurt" or that if they just keep giving the milk that it will encourage tolerance to build up, which is incorrect. So, either way, don't worry what your doctor calls it, just push for the referral and the hypoallergenic milk!

What part of the UK are you in?

[Spectra]

I love that explanation Mashimaro, it makes so much sense as to why Doctors call it an allergy sometimes.

[KathrynK]

hello
can I just jump on the Aveeno train and say that me & both the kids have eczema- I have used Aveeno for years since a doc prescribed it for me. And yes, it's the same old stuff you can buy in Boots, like mashi said. They do a bath oil as well which is fab.
Also most of our HVs can prescribe it too, so I make sure I get a top up when I go to clinic with Alex to save a trip to the dr.
hth
xxx

[Spectra]

I do have a question about Aveeno.  Does it have oatmeal in it?  I ask because my son is allergic to oatmeal, and I never tried Aveeno.

[Mashi]

Not sure if all HVs can prescribe it - mine can't. I need a refill and she was over to visit today. Said that lots of ppl ask, but she isn't able to write the script for it, which is weird weird weird.  

Anyway we also use the bath oil - turns the bathwater all mucky coloured but leaves DS's skin very nice!

In my son's case it is believed to be allergy and not intolerance mainly because it is an instant skin reaction, with some digestive probs as well, but the skin is the main thing and it is pretty immediate.  But, again, it doesn't really matter WHICH it is, the main thing is eliminating the milk!

Do let us know how you get on!

[KathrynK]

yes Mel, it does have oatmeal in it, sorry 

[Spectra]

Aw, too bad, I always hear good things about Aveeno.

[Jimbob]

With James it is an allergy to. James' skin reacts immediately and then he starts with tummy pain a few hours later. James has also tested positive on RASt tests. Like it has already been said though it really does not matter if it is an allergy/intollerance as the treatment is the same.

Kelly

[garethstewart]

Hi - here we go again!

We went to the doctor's, and he was surprisingly helpful (credit where it's due!). He suggested, without prompting, that she may be cow's milk protein intolerant, and prescribed a hypoallergenic hydrolysed formula called Pregestimil.

We've been on that for three days now, and two things have become apparent. 1) Lara really doesn't seem to like it, and is routinely refusing any more after taking only 2 oz or less - to be honest I'm not surprised since it smells like packet mix for cheese sauce, and 2) it is also (still) tearing the stomach out of her, only at an accelerated rate. Instead of taking an hour or so for the wind to start kicking in it's now only taking minutes after she feeds before you can hear her tummy gurgling, and then she is straining and grunting to pass wind for anywhere up to 30 or 40 minutes afterwards.

We requested the input of a specialist whilst at the doctor's, and he has referred us to a feeding clinic, but apparently it could be up to a fortnight before we are seen, and quite frankly I am not inclined to put her through this cycle of tummy cramping and straining every time she feeds until we can get an appointment.

Am I overreacting? Is this the way feeding just is with some babies? Both of us are starting to become desperately frustrated, especially since the wind/straining/grunting (she's making this really horrible guttural sound now when she's straining) is affecting both her sleep and ours - she's only sleeping for a couple of hours at a stretch during the night, and staying awake between sleeps for sometimes up to two hours.

Any help or advice would be joyously welcomed!

[Spectra]

Did you try mixing it with what she was drinking before?  With my son I had to do it one ounce at a time.  First day was 7 oz of old formula and 1 oz Neocate, then day 2 was 6 oz old formula, 2oz Neocate.  When I did it that way he didn't notice a taste difference.   This also could be why it's causing tummy troubles.  I know, even when I introduced the new formula slowly, it would take a few days for their bowel movements to look more normal. 

How are her other symptoms?  Do you see any change?  Sorry you are having to go through this.  Hopefully someone else can offer some advice too.