Author Topic: MP allergy confirmed, what can I add to milk?  (Read 9829 times)

0 Members and 1 Guest are viewing this topic.

Offline pamelamcgahon

  • New & Learning The Ropes
  • *
  • Showing Appreciation 1
  • Posts: 44
  • Location:
MP allergy confirmed, what can I add to milk?
« on: November 25, 2009, 20:50:46 pm »
To cut a long story short LO has reflux and milk protein allergy.  We were told by the GI to stop her gaviscon and to look on the web for other ways to thicken milk if she still needs it.  She does as no gaviscon left a grumpy, sicky baby going through loads of clothes and bibs per day.  I have started adding baby rice to her bottle and it seems to be going well, just to 2-3 bottles at the moment.  Health visitor was shocked but said to try in all as I had been advised by the consultant to thicken.  I was going to try adding other things to get her tastebuds used to other flavours as her nutramigen tastes awful and smells bad too.  After messing around with gaviscon and re challenging normal formula at the request of the consultant the milk protein allergy is confirmed but LO now won't take as much of her nutramigen (and who can blame her).  This was why we tried baby rice.  She started waking more often for feeds during the night.  She won't take it off the spoon yet so in her bottles she might get a bit fuller.

I was going to try other things like porridge/rusks but realised it all contains milk.  Have any of the UK people come across anything I could use.  Not too bothered about avoiding soya but soya formula did give her the runs so there may be an intolerance there too.

I know I could try ordinary fruit puree when I eventually wean but I am looking for something to thicken the milk to act as the gaviscon did but also to fill her up too.

Thanks
Pamela

Offline Mashi

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 408
  • Posts: 16805
  • Location:
Re: MP allergy confirmed, what can I add to milk?
« Reply #1 on: November 25, 2009, 21:01:50 pm »
How old is she?

A few random thoughts I have....

Milk allergy/intolerance can cause reflux as a symptom.  Essentially it is LO trying to get rid of the milk that is causing them tummy pain and one of the things they do is spit it up.  So in that case, it's not true "reflux" but really just a symptom of the milk allergy.  If that is the case, then once her body is cleared from the milk she was drinking the reflux should go away. I think for my DS that took about a week or so.

If it IS actually reflux and not just refluxing as a symptom of the MPI, then your doctor should be giving you something proper to deal with the reflux - there are medications that are beyond just milk thickeners.  Have you discussed this with him?? I mean if he basically told you to look online for advice and didn't offer you any then that would sort of concern me, but perhaps you can go back to him and ask again if her symptoms don't improve soon.

We started Nutramigen when DS was about 5 months, it took him about 4 weeks to take a full bottle of it. He was also soy intolerant but we mixed the Nutramigen with soy formula (as at the time we weren't 100% sure he was soy intolerant) to get him used to the taste, gradually reducing the amount of soy in the mix.  The younger the LO is the more easily they will take the Nutramigen but it can take a while to get them used to it, as it's nasty tasting stuff.  Once my DS was on it though he LOVED it and it took him a LONG time to accept real milk when he grew out of his milk allergy at 13ish months!!

As for thickeners you can get a product called Carobel, it is made by Cow and Gate, and if your chemist does not stock it they should be able to order it in for you with no problems. It is only about 2.50 for a box and my DS was on it for about 3-4 weeks and we used barely 1/4 of that box!!  So one box will last a while.  It is a pain in the butt to use, to be honest, as it thickens the longer it sits in the formula and has to be shaken forever to get it dissolved, but it may be worth a try for you. I can't promise it has no milk traces in it as at the time we were using it I didn't know DS was milk allergic, but I am 99% positive that it doesn't. Check the label or perhaps even call Cow and Gate to ask!

Lots of other things, but depends on your LO's age?

HTH!

Offline irishprettykitty

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 6
  • Gender: Female
  • Posts: 504
  • The best surprise a mum could ask for
  • Location: Westmeath Ireland
Re: MP allergy confirmed, what can I add to milk?
« Reply #2 on: November 25, 2009, 21:11:04 pm »
hey pam,
I too would be very concerned that you were told to get advice from web.
My lo was diagnoised at 4 months with severe reflux and MP allergy. We went straight to Neocate formula which is even more hypo-allergenic than nutramigan. We were lucky and he took his milk quite easily but it still took a few weeks to get used to after being breast fed. What really helped my lo with his reflux was zoton tabs.
If your lo is ready to start solids (can be done if need to from 4 months) purr'ed pears are great to start with and help neutralise the acid from reflux. there is a great page here with loads of MP recipes but would seriously be going back to GI and asking why is your lo not in meds and why are you being sent to the net for help?? This is the docs fortay not yours.
Fingers crossed she gets better
Monster Finn: Spirted/touchy with reflux and ASD
Pumpkin: our lost little girl: tiny angel now 1/4/09
Princess Saoirse: spirited textbook with reflux and nails to rival any cat!

Offline rinajack

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 162
  • Gender: Female
  • Posts: 8159
  • Location: Australia
Re: MP allergy confirmed, what can I add to milk?
« Reply #3 on: November 25, 2009, 21:19:36 pm »
If your baby is MPI and has no other intolerances/reflux, then eliminating milk should resolve the reflux issues on its own, and you should not need a thickener.  If you still need something, then there are either more as yet unidentified intolerances, or your lo has true reflux, which will require prescription medication. Pamela, how old is your lo and how many night wakings are there?

My son is still on reflux medication at 2 yrs 3 months, after several unsuccessful attempts to wean.  We have also, and it took most of his life so far, identified Milk Protein Intolerance, Wheat intolerance, and very strongly suspect Soy protein intolerance, although for this last one we have only eliminated major sources of soy, not hidden sources.
Rina - Mum to Zara 29/3/06
                     Hugh 26/8/07
                     Bree 31/5/10

Offline pamelamcgahon

  • New & Learning The Ropes
  • *
  • Showing Appreciation 1
  • Posts: 44
  • Location:
Re: MP allergy confirmed, what can I add to milk?
« Reply #4 on: November 28, 2009, 21:49:24 pm »
She is 16 weeks on Monday.  The reflux is there even on the nutramigen and the GI diagnosed reflux and MP allergy.  I really didn't like what she said and I guess some doctors don't like giving meds to babies.  She has been better with ric in her bottle and is now back to her usual 1 night feed around 3am.  She is still refusing her bottle unless she is really starving so we thing we may try and extend her routine as we have just managed to get her on 3 hour EASY but she could possibly go lonher now she is bigger.  This week she only gained 3oz when she usually gains 7-8 so the refusal is obviously having an effect.  Spoke with health visitor and she said if the GI told me to thicken without gaviscon then to try rice in all her bottles so we are weaning th gaviscon 1 bottle a week and hopefully the rice may fill her up.  Might have to start weaning but GI said to wait til 6 months, again I'd have thought with reflux the earlier the better as solids will stay down better.  My health visitor went mad when I toldd her about the GI.  Someone I spoke with said their LO uses the aptimal/cow n gate pepti instead of nutramigen and it tastes better so I might have another chat with the GP.  The GI said we could go back and see her if we wanted to but I didn't like anything about her so would rather not.  Thanks for all your thoughts, I shall have to keep persisting with this.  GP was happy to keep gaviscpon as long as we need and she has Zantac 3 times a day and without it her sick makes her cry!  With it she just laughs.  Reflux is settling but milk without rice or gaviscon is a no no.  Had a look at some other milk free cereals I might try and I may start her rice on a spoon in a couple of weeks after her final injections next week!  Xxx

Offline Canwi

  • Retired GM and Mod still paying it forward
  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 253
  • Gender: Female
  • Posts: 11368
  • Me, in a picture
  • Location: Halfway 'round the world from where I am at heart
Re: MP allergy confirmed, what can I add to milk?
« Reply #5 on: November 29, 2009, 04:57:30 am »
Not in the UK, but I would suggest that you really read the labels on ALL baby cereals EVERY time you buy them.  I've had baby cereal that was once milk free suddenly appear with skim milk solids in it.  There's no laws, that I'm aware of, anywhere in the world to prevent them doing this either.

If eliminating ANY source of milk from ANY where doesn't fix the food refusal, then I do think that you need to go back and either get your LO's Zantac dose increased, or get a medication like Prevacid for her reflux.  If she is still refusing food, then she is still having pain with eating.
 
8) I BFd a combined total of 4y, 1m & 1d

Offline Mashi

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 408
  • Posts: 16805
  • Location:
Re: MP allergy confirmed, what can I add to milk?
« Reply #6 on: November 29, 2009, 08:50:22 am »
Well if the MPI is confirmed and GI thinks she has reflux in addition and not just as a symptom, the why are they trying to make you wean the gaviscon from the bottles and use rice instead? If she has reflux then gaviscon is fie to continue using so why take her off of it?  Bit odd, but maybe I am misuderstanding.

Instead of rice cereal you can get Carobel which is a thickener made for infant formula.  Rice cereal can gloop up in the bottles and be a bit of a choking hazard but Carobel is specifically made as a milk thickener. 

I second what Canwi says about reading the labels every time, but a good milk-free rice cereal is made by Organix, I found it only available at the larger Tesco and Asda stores but at most Boots, but I lived in quite a small town so that could have been a factor.  Do check the box every time as things change. At the time I was using rice cereal for DS, Organix was the only milk-free cereal we could find.

You said that you have friends with LOs on Aptamil/C&G Pepti, but that sounds wrong to me...although it's been a few months since I was into formula and milk-free and what not I am 99.999% sure that C&G and Aptamil do not make a hypoallergenic formula.  If they do I would be flabbergasted that you can buy it off of the shelves in the UK.  That you say Pepti makes me think you may mean Pepti Junior? Pepti Junior is a full elemental formula, meaning it is 100& totally hypoallergenic - it is the same as a formula by another brand that is called Neocate.  Both Pepti Junior and Neocate are available with a prescription and both are extremely expensive should you choose to buy them on your own. When we priced it to see if we could get some to bring with us to Germany when we moved it was 48 pounds for a HALF sized tin.  Not something you can reasonably buy!

Aptamil and Cown and gate both make a milk called "easy digest" or "sensitive" (not sure which one uses which name) and it does say on the box that it is for babies who have trouble with milk proteins. This is NOT hypoallergenic formula.  It has the milk proteins only very partially digested, NOT enough for a milk intolerant baby, so you should not try this for your LO!  Nutramigen, although it does taste horrible, is really what your LO needs to be on (or Neocate, Pepti Jr, should GI decide, as it is MORE hypoallergenic than Nutramigen).  Your LO will take to the Nutramigen sooner or later, esp as she is very young.

With the weaning time, most paeds and GIs will strongly advise that a LO with a milk intolerance be weaned no earlier than 6 months. The reason for this is because the intestine tends to be more sensitive in babies with food intolerances and early weaning can cause more discomfort and even intestinal damage.  BUT you are right, in reflux babies often earlier weaning is advised....so in LOs with both reflux and MPI, it's a toss-up on what to do. In this case I would advise just following what your doctor says to do, which will probably be wait until 6months.

Does any of that info help???

Offline pamelamcgahon

  • New & Learning The Ropes
  • *
  • Showing Appreciation 1
  • Posts: 44
  • Location:
Re: MP allergy confirmed, what can I add to milk?
« Reply #7 on: November 29, 2009, 20:54:09 pm »
Think it was the pepti junior someone mentioned but it was prescribed by the doc not bought, her Lo refused nutramigen.  Is it ony a GI who can give this or can the doc?  Tried the easy digest and it was awful, not hypoallergenic either, was before allergy was even mentioned. 

The rice is fine, only a teaspoon in a 5oz bottle and it totally dissolves and she seems to take it fine.

Thanks for the info.
Px

Offline Edesanja

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 39
  • Posts: 2593
  • Location: Christchurch, New Zealand
Re: MP allergy confirmed, what can I add to milk?
« Reply #8 on: November 30, 2009, 00:20:56 am »
Pepti Junior is a full elemental formula, meaning it is 100& totally hypoallergenic - it is the same as a formula by another brand that is called Neocate.  Both Pepti Junior and Neocate are available with a prescription and both are extremely expensive should you choose to buy them on your own. When we priced it to see if we could get some to bring with us to Germany when we moved it was 48 pounds for a HALF sized tin.  Not something you can reasonably buy!

I don't think this is correct. We only have 2 options for hypoallergenic formulas here: Pepti Junior and Neocate. I believe Pepti Junior is not as broken down as Neocate which is broken down to amino acids

Someone I spoke with said their LO uses the aptimal/cow n gate pepti instead of nutramigen and it tastes better so I might have another chat with the GP.
Also, according to our dietician Pepti Junior tastes a lot worse than Neocate! (which smells revolting - there's no way I want to try it!)

My DD also went straight to Neocate at 16 weeks (paed didn't want to try her on Pepti Junior as he felt the likelihood of her still reacting to that was quite high). She also started on omeprazole at the same time (granuals rather than suspension) and that seemed to help a lot.

There is a fantastic website here in NZ for reflux babies:
http://www.cryingoverspiltmilk.co.nz/ that has a reflux board associated with it that I found really helpful:http://www2.everybody.co.nz/forum/ubbthreads.php?ubb=postlist&Board=6
Jenny - mama to



Offline Mashi

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 408
  • Posts: 16805
  • Location:
Re: MP allergy confirmed, what can I add to milk?
« Reply #9 on: November 30, 2009, 09:13:42 am »
Thanks - I did think Pepti was a fully elemental milk, not a hydrolysed.  And, as of July 2009 (which is exactly when I left UK so things do change fast sometimes!!!) it IS being marketed as Aptamil Pepti, but still is a prescription formula.

Sorry for my misinformation!!!!!!!!!!!!!!!!!!!!!!!

Offline pamelamcgahon

  • New & Learning The Ropes
  • *
  • Showing Appreciation 1
  • Posts: 44
  • Location:
Re: MP allergy confirmed, what can I add to milk?
« Reply #10 on: December 03, 2009, 20:36:59 pm »
Thanks again ladies.  Think we will stick with the nasty nutramigen.  She is taking 4 bottles with rice in  - although not as full but the rice is more filling - and she's back to her 1 feed a night.  The reflux is settling as well.  Still there but not as much, even in the rice bottles.  I have bought a boots own rice with orange and bannana so might try that next week (jabs this week so hasn't been the best).

Sounds like I got a crazy GI!  I may still go back if her weight drops at all.

x

scarlettsmom

  • Guest
Re: MP allergy confirmed, what can I add to milk?
« Reply #11 on: December 04, 2009, 13:21:52 pm »
Good luck and (((hugs))))!  Let us know how everything turns out.

Offline pamelamcgahon

  • New & Learning The Ropes
  • *
  • Showing Appreciation 1
  • Posts: 44
  • Location:
Re: MP allergy confirmed, what can I add to milk?
« Reply #12 on: December 06, 2009, 21:39:21 pm »
Tried her with the flavoured rice today and she took 3oz and didn't seem upset by the flavour.  I might start her on spoons of rice in the next week or so.  Still on 1 night feed but lasting the 3 hours mostly now.  She did sleep through the other night but a one off again. Can you believe DH's aunt has bought her a big tube of milkybar buttons!  Apart from not being on solids yet what part of milkybar doesn't suggest milk! Hmm, will have to send clear messages out next year when she is on solids (if she is still mpa).  Apparently the aunt asked someone she knows if buttons are suitable for little ones - perhaps she forgot she is only 4 months next week and not many babies will be eating buttons at this age!

scarlettsmom

  • Guest
Re: MP allergy confirmed, what can I add to milk?
« Reply #13 on: December 07, 2009, 00:22:38 am »
Lol!  Yeah, get ready to repeat yourself a million times.   ;)

Glad to hear the rice went well..