Any advice regarding Pept?

[sleepymama]

Hi all. I wondered if anyone could help at all. My DS is 11 weeks old and after having runny poos since 3 weeks old and at 8 weeks developing a rash my doc has prescribed Pepti for suspected CMPA. He has been on it for 3 days now and although the rash has faded a bit he has done 2 poos which are even more green and mucousy than usual(we also started using doublebase at the same time so I am not sure if the rash has faded due to this or the formula). Does anyone know how long it should take for the pepti to start to work ? I have a phone appt with Doc on Tues but wondered if anyone could shed any light on this? Also the only time that he had normal poos was for a week when he was given SMA Lactose free for suspected lactose intolerance but 2 days after starting this was when the rash started! THe doc then said that his stool sample did not show any sign of Lactose intolerance ????? I am driving myself crazy trying to work out whats happening so any advice would be grateful please

ds now has the runs which are green and mucousy - not sure if i am doing right thing but stopping pepti and trying SMA LF to see if it helps. Wondering if the rash will return but all seems to be trial and error. Poor thing has changed milks 7 times in 11 weeks! ANY ADVICE PLEASE!!!

allergic reactions can be more serious than intolerances. Although a rash may not seem as bad as the stomach problems keep some liquid piriton handy. Any sign of breathing problems call an ambulance.

You could try getting some lactase - coelief infant drops are widely available, although not cheap - to help until you speak to your doctor. However when you speak to the doctor it might be worth asking for nutramigen or neocate.

Thanks Tatt. We have tried 2 feeds on the SMA LF and the rash has returned with a vengance! At least we know that the rash is caused by something in the milk. I rang the doctor and have bee begrudgingly prescribed Nutramigen (even though I was told they would do it once and I will have to get it over the counter after that!).
I will go back to Pepti tonight until I have got the nutramigen as I don't want the rash to cause him problems either. I will just have to cope with the runny poo's as they don't seem to be bothering him much - just me with the leaking !
Am I right in thinking that he must have a CMPA or could he be intolerant? Whats the difference? Is it a case of the severity of the reactions?
Am I doing the right thing in going back to Pepti for now and how long should I give the Nutramigen to have an effect? I did give the pepti 2.5 days before the "runs" started.

Was the lactose intolerance test done whilst/after your dc was on SMA LF? If so, this may have been the cause of a negative result (they must have ingested lactose for the test to work).

It does sound very much like an allergy though as opposed to a lactose intolerance. In which case, please be very careful about giving more regular formula or the SMA LF as these will make him vulnerable to a full-on allergic reaction.

The difference between allergy and intolerance is that an allergy is immune-related, an intolerance is not. It is not so much the level of reaction, but what is causing the reaction which defines the difference (immune system going screwy over a harmless substance or something else going wrong). That said, an allergy has the potential to be life-threatening (with anaphylaxis).

Lactose intolerance otoh has nothing to do with CMPA as this is the inability to break down milk sugars.

So, you can have:

Cows milk protein allergy
Cows milk protein intolerance
Lactose intolerance

Wrt different milks, it can often be a case of trial and error to find one that suits your baby, though if he drinks the pepti you might want to try it for a short while longer to see if things improve (I seem to remember neocate gives khaki green poo to start with, I can't remember about the others). However Pepti does taste considerably better than the others. If you don't see any improvement there are plenty of other options to try, but you may have to be pushy with your doctor to get him to prescribe different ones. It sounds to me like he's going through them at the moment in order of expense....

Thanks UAM. I have stuck to the Pepti since last night and we have had one runny nappy so far. I got the tin of nutrmigen this morning but on the side it says that it may cause green loose frequent stools. WIth that in mind I rang the aptamil helpline to check if this is the same for Pepti and was told that Green frequent loose stools are experienced by some with this milk. I have been told to keep an eye on the mucous though and if continues to see the doc. So I will stick to the Pepti and see how his stools go.
Sorry to sound stupid but I am still confused about th allergy/intolerance issue
Could DS be CMPI or is that as he has had a rash he must be CMPA? How would and intoerance present itself? If he only had a dippy tummy would this mean an intolerance?
It does sound serious to have a CMPA and I am now worried about the issues of weaning (i know its a way off yet!)Is it easier to grow out of a intolerance rather than an allergy?
Is it possible to test for CMPA in one so young?
Any advice is gratefully received.

Sorry, I probably didn't explain very well. There is some better info here www.eatwell.gov.uk/healthissues/foodintolerance/foodintolerancetypes/milkallergy/. Often it can be difficult to distinguish between the two however from symtoms alone.

Sometimes they will allergy test in babies, but it is doubtful that they will test in one so young as they often get (false) positive results in babies.

Weaning can be more difficult in allergic babies, but you're a while away yet. Just go slowly with it and introduce one food at a time and keep an eye out for reactions. Then read every label really, really carefully as milk is everywhere. It is easier with dairy allergic children not to rely on jars of baby food (as so many contain milk), so make your own food whereever you can.

Try and get a referral to a dietician who will be able to advice you best during weaning.

HTH.

Thanks for the link UAM. Still abit confused about it all but will stick to the Pepti and see what happens.
Perhaps if I ask the GP for a dietician referral now I may get an appt in time for him to be weaned (apparently in our area the wait is usually 13 weeks!)
I am worrying myself silly about putting DS in danger with not being clued up enough about allergies and am even thinking about paying for an allergy test but if they are false positive then I guess its a waste of time. I will be going back to work at 6 months so am worried about DS being in child minders care without much info about what he is and isnt allergic to.
Sorry to go on but it is good to have someone to talk to / ask about all this as my DH thinks that I am being neurotic !

as the rash returned you can be pretty sure they have a cows milk protein allergy. They may outgrow it (often by age 3, sometimes later, some do have it for life though) but you'll need to keep them off for a long time and be very cautious about retrying.

They may also have a problem with lactase, I'm afraid it's not easy to tell with intolerances and you can be both intolerant and allergic. Allergy tests don't help with intolerances, trial and error is the most conclusive as stool tests can be wrong. To add to the complication babies get stomach problems if they have viruses and can get stomach problems as a result of the allergy.

Although you'll need to be careful choosing/educating a childminder lots of parents of allergic children work. They should be clear what to avoid and how to treat a problem if it happens.

You will feel more confident and your husband will be more supportive if you see a consultant in allergy. There are quite a lot of complaints on these boards about men who don't get it, including some from me .

I'd actually suggest using the nutramigen now and trying the pepti again in a few weeks. Your doctor can prescribe nutramigen more than once but if they are reluctant to do so that's another good argument for seeing a specialist. Some people find dieticians helpful.

Thanks for the advice Tatt. Am speaking to doc at 11ish so will see what she says. Interestingly enough we have not had a dirty nappy since yesterday morning yet so am hoping that the Pepti is doing something. The rash from the sma LF is starting to fade slowly again - or could it be that he is allergic to the CMP in Pepti (i know that they are broken down but still there)?
Should I ask for a dieticians referral or an allergists referrel when I speak to GP?

If the next nappy is a mucousy one then I will start the nutramigen. However the instructions on how to make up the feed say that you should cool the boiled water and add feed to this! I thought that was not what you are supposed to do now! Am confused about that!

When can you give liquid piriton to babies? For example if he got a rash in child minders care as a result of having something with milk in would I tell her to give him the piriton? Is it suitable for all allergic reactions?
Also if he is allergic to CMP do the reactions to it always stay the same? Is he more likely to be allergic to other stuff? Sorry to ask so many questions but we have no family history of intolerances or allergies on both sides and DS 1 eats and drinks anything. Any advice is really helpful as I am worrying myself silly over it all.

Hi Sleepymama, my DD was CPMI but has now grown out of it. She is at nursery where I know there is at least one child with CPMA.

When you see your GP, I suggest you ask for either a dietician or paediatrician referral. Once you are in 'the system' at your local hospital they can refer you on to other specialists if neccesary. For my DD, I only got a referral when I made it clear to the GP I was not going to move until somthing was done. So get nice and comfy in a chair in your GP's office and refuse to budge until you get what you want.

With special formulas, it is very important to follow the instructions closely. Some of them will not dissolve so well in hot water, or go really frothy. Some have to be shaken to mix, with others you have to gently roll the bottle.

Piriton liquid has dosing intructions for over 1 year old only. This does not mean it cannot be given to younger children, but you will need to ask your GP to prescribe it.

Don't worry about weaning yet. Just take each week as it comes. If you get a dietician referal, they will help with weaning. Otherwise, start gently with single vegetables. In addition to being careful about food containing milk, it is worth watching carefully for any reaction to food containing soya. Soya protein is quite similar to cows milk protein so it is no uncommon to be allergic to both.

hi just to help a little with your confusion over cmpa and cmpi.

Ask your doctor or hv to send a nappy sample away to test for allergy. When test comes back if it shows anything over a 1/4 they have a signif allergy.
If the PH of the stool is high then they have a cmpi.
It is possible to have both cmpi & cmpa and lactose intolerant like my eldest.
My youngest has cmpa and couldn't take any milk except nutamigen aa. it can take up to 3
months for there insides to get back to normal and respond to milk.

also look on allery uk website. this lists all names that milk can disguise itself as

Hi Sleepymama, in answer to your question about whether reactions stay the same, the answer is no. In particular for milk allergy it can be diificult to predict the strength of future reactions and just because one has been mild, does not mean the next will be. Conversely, a previously strong reaction may not be the same next time.

Generally speaking mild reactions are normally those that occur on the outside (rashes etc), strong reactions are those that occur on the inside (e.g. affecting the respiratory system etc). At this age you should not give piriton (except under medical advice) and in fact the pharmacist may refuse to sell it to you if they realise it is for your lo, but if you notice a strong reaction (problems breathing, distress, facial swelling, tongue swelling, excessive salivation) do not hesitate to call 999.

When your lo starts with the childminder you may want to consider providing your own food. This means you can relax about the childminder not giving food she shouldn't and also allows you to monitor reactions to ingredients (and only send food to the childminder that you have already tried and tested at home first).

The allergy consultant I see with my ds's was very good in giving a list of reactions to look out for and action that should be taken in case of an allergic reaction, which I could give to the nursery (though I admit we didn't send ds2 in the end). It might be worth asking for such a list for your childminder.

Finally wrt proteins in Pepti and Nutramigen, both of these have cows milk proteins in them, but in both cases the proteins are heavily broken down. Pepti is based on broken down whey, whereas Nutramigen is based on broken down casein. Some people react to Pepti but not Nutramigen and vice versa. Some, like my ds2 reacted to both and is now on Neocate which contains no protein (completely man-made mix which is not actually based on cows milk at all!!!). Avoid soya formula though, but I guess you already know that.

Agree with Academic about lactose needing to be in the stool sample, before it can be detected.

DS (23 months now) was nil by mouth at Children's Hospital, and then they tried to introduce cow milk, which was a total disaster, and he went onto Nutramigen, but then was switched to Neocate.

It is possible he's reacting to the CMP in pepti, which is why I'd stick to the nutramigen. A lot of babies are OK with Pepti but sounds like you may have one that needs neocate or nutramigen.

It's perfectly true that piriton has a warning on the bottle about use under 1. It's also sometimes prescribed for allergic babies under that age. If there was just a rash but no other sign of a problem then its best not to use it unless prescribed. Personally if my baby had swelling or breathing problems although I'd phone for an ambulance I'd give them piriton before it arrived. Breathing problems are an emergency, you don't always have time to wait for an ambulance and the sooner treatment starts the more likely it will work. I might give less than 5ml, though, as medicine dose is normally related to weight.

If you ask to see an allergy specialist you may have to see a paediatrician with an interest. Having seen both allergist and paediatrician I'd take the allergist every time if available. We've not seen a dietician but I've read on these boards of some helping to persuade gps to prescribe appropriate formula or to refer for allergy testing.

hi another vote for nutramigen. dd2 is cmpa and we started on regular formula and went through wysoy to pepti and ended up on nutramigen aa which was the only one her skin calmed down with. It is very expensive and that is why gps are sometimes reluctant to prescribe. No way you should pay though if your ds needs it.

dd got prescribed piriton at around 3-4 months and she has a 2.5 ml dose.

Thanks to everyone for their advice. Spoke to the GP on tues and made it clear that I want a referral and to take the next step as it were..She said that we will discuss in person at next appt which is this tuesday coming. Fingers crossed we get somewhere. The GP specialises in Paeditrics and runs a baby clinic so I am hoping that she knows her stuff. She has told me to stay on the Pepti until then. We have had continuous mustard coloured mucousy nappies that are litterally liquid that soak through. DS generally ok but very windy. The rash has calmed down but occasionally comes up after a feed again and fades abit after a while. I thought that nutramigen was to deal with rashes resulting from CMPA ? Does anyone have any experience of liquid mucousy stools and if this made any difference with different formula. I am starting to wonder if this will not be resolved until he is actually on solids at this rate.
I still can't understand why the stools were solid when DS was on SMA Lactose free though. He was tested for LI and told that he was not! DS also has a mucousy nose at night mainly - am wondering if this is all linked too!

mucosy nose probably is linked although that could be either a virus or problems with the milk.

I'm confused about why the gp let you have nutramigen and then tells you to stay on Pepti. Wouldn't be happy about keeping them on Pepti if they are still getting rashes. Think I'd be inclined to start the nutramigen anyway.

Keep pressing for that referral. We saw a paediatric allergist who diagnosed nut allergy and later had to see a consultant paediatrician (supposedly with an interest in allergy) for more tests. They were asking me for advice and told me a test wasn't available when we found out from the anaphylaxis camapign that it was. I wouldn't rely totally on a gp, however many baby clinics they run.

Consultant allergists are worth their weight in gold, but are unfortunately few and far between. They often tend to be the only medics who take allergies seriously though.

When we first saw ours with ds1, it was like someone switched on a light as he asked about symptoms and we just sat there "yes he has this, yes he has that", which GPs had been dismissing constantly for the first 3 years of his life saying "oh that's normal, he'll grow out of it" to everything .

If you can't get a referal to a consultant allergist try to see a paediatric gastroenterologist with an interest in allergies as many allergies affect the gastrointestinal tract.

Will try and push for a referral with consultant allergist when see doc on Tues. DS also has second lot of jabs on tues morning so lord knows what the side effects of that will be on his poor little belly!
Still liquid mucousy nappies - just had one that went straight out of nappy , all through his clothes and on to mine! YUK!
I think that the GP has told me to stay on pepti until she checks out whats in SMA LF that made his stools normal (as it were) and she said that she was going to speak to "someone" to get some advice/ info(???)
I have read that green loose stools are common with Nutrmigen and hence am putting off trying that at the moment as it seems we may well just be swapping yellow liquid stools for green liquid stools!
I know that both Pepti and Nutrmigen still have some Milk Proteins in them so not sure why Nutramigen will be any different to Pepti.

Any ideas?

sorry whats Nutramigen AA??

Hi Sleepymama - nutramigen is different from Pepti in that nutramigen is based on the milk protein, casein. OTOH, Pepti is based on the milk protein, whey. In both cases their respective milk proteins are extensively broken down. However, if a child is allergic to whey but not to casein, Pepti might be more likely to still give an allergic reaction and vice versa.

Nutramigen AA is different from nutramigen 1 in that it contains only amino acids (the building blocks of protein), but does not contain any actual protein. In this way it is quite similar to neocate, but they do taste different (nutramigen aa tasting similar to nutramigen 1, whereas neocate tastes like what I imagine potato peelings probably taste of).

The medics often prefer Pepti or Nutramigen 1 (largely because of the price - they are considerably cheaper than Neocate or Nutramigen AA), but also because they still have some protein in them, the body has to do some work to break the protein down. Amino acid based formulas (nutramigen aa and neocate) are both very expensive and therefore tend to be less favoured by budget-consious GP's.

Hi UAM - thanks for the info. All alot clearer now! Will see how it goes with the GP in the morning and perhaps think about starting Nutramigen then and see if his belly improves with it. Am hoping that sooner or later something will work ! Oh how I long to see a "normal" poo in his nappy Will let you know how it goes tommorrow.

other difference is that Pepti has a small amount of lactose in and nutramigen doesn't. The loose stools could mean lactose intolerance, either temporarily as a result of the CMP allergy or permanent.

Thanks Tatt - went to see Doc yesterday and have started nutramigen. Surprisingly DS has taken to it well. It actually smells better in the tin than Pepti does and smells the same in the bottle! The GP hasd also agreed to refer DS to a dietician so quite pleased with that. We have only had 1 dirty nappy since yesterday morning so far and still loose and runny but a bit less so than normal.
The GP also thought that symptoms were indicative of a lactose intolerance and said that although stool sample showed no sign of this we must be lead by the baby! Am I right in thinking that if he is lactose intolerant it is a temporary thing as he was ok up until he was 3 weeks old nd then all this started?
What other things is Lactose in (is it something found in only milk based products?)