Intolerance help???

[Amy Quarrell]

Hello there, am new to this and this is my first post so apologies if I make any mistakes..... :-)

My 14 week DS was recently diagnosed with reflux and possible milk protein intolerance after 10 weeks of grunting, projectile vomiting and squirming etc we eventually had to take him to A&E where they kept him in overnight :-(  He seemed to get VERY bad at 10 weeks which apparently is common for reflux to peak. 
My concerns are that we had him on Aptamil formula for 8 weeks with no problems other than the terrible projectile vomiting - he was even gaining weight.  At 8 weeks we were prescribed with Infant Gaviscon which worked for 24hours only and he then continued to vomit, we also changed to SMA Gold formula at the same time thinking it could be Aptimel causing the sick.  He then developed a rash on his face and severe constipation!! we persevered with this for 2 weeks  during which time we took him to the GP who suggested we try Soy.  We tried for 24hrs but had to eventually take him to A&E after he woke up with a TERRIBLE rash, refusing feeds, sleeping loads, very off colour etc.......he was kept in overnight and had lost 5oz in weight.   
During our stay in hospital, the only formula we had, was Aptimel which surprisingly he seemed to to enjoy!
We left the hospital with a POSSIBLE diagnosis of milk protein intolerance and meds for his reflux which seem to be working brilliantly! (Renitidine & Domperidone)
After 3 weeks on Nutramigen 1, DS has gained 1lb in weight but has now become fussy and refusing feeds.......also has a rash on his chin and a very sore bum - we are not sure of this could be because he is teething...?
In the last 48hours we have made the decision to go back on Aptimel as we do believe in our hearts that he is NOT intolerant.  However, he is enojying Aptimel and is eating more than usual but he seems to have developed diarrhea and irritability and his face seems rashy/eczma (he has slight eczma on his elbows/knees anyway). We're not sure if this is due to the change of feed? Teething?  and we are driving ourselves mad worrying if we’ve done the right thing but also want to give it a chance to find out........please help!  Any advice or similar situations would be a great help.  Also, is there ANY way of definite diagnosis for this intolerance??
Many thanks
Amy & John & Baby Johnnie x x x

[Buntybear]

Hi and welcome  Sorry that you are having such a rough time. The only way to diagnose an intolerance really is to eliminate the food causing the reaction and see if things improve. Do you think that his symptoms have worsened since going back on the Aptimel? Why did you decide not to continue with the Nutramigen?

Have a look at this thread - it contains some info about reflux and intolerances

http://babywhispererforums.com/index.php?topic=189899.0

Hugs

[clairebear79]

Hi there

You sure do sound to be having a tough time of it. (((hugs)))

I'm sure there will be some more experienced eyes who answer your questions or correct me if I am wrong.  I seem to recall being told that if it is milk allergy, this can be determined by tests eg scratch test, but milk intolerance cannot.  Allergy usually gives an immediate reaction whereas intolerance gives a delayed reaction.  The best way to find out if your LO has a dairy intolerance is probably to do an elimination diet.  This is what we are doing.

I am in a similar situation though my LO's symptoms are not as severe as yours.  My LO is 8months old & has been on Aptamil Hungry milk since around 10 weeks old.  He has reflux which was reasonably well controlled with Gaviscon until he started solids & the spit up increased a lot.  He also has eczema on his arms, elbows, knees, legs & the whole of his trunk, and has had cradle cap since 5wks old and gets repeated facial rashes (almost daily) across his cheeks & forehead and is often red & blotchy around his eyes.  He is also very irritable & cries a lot.

I have FINALLY gotten a prescription for Aptamil Pepti which is a partially hydrolised milk (contains cows milk protein but broken down so it can be digested more easily).  I more or less had to beg the doctor for it as I was sure he was reacting to the milk & wanted to trial dairy free.  He wanted me to use soy milk but I researched & found that often babies with MPI also react to soy and its also not recommended for boys to use it.

Anyway, I've cut all dairy from his diet (both milk & solids) and within only a week or so his facial rashes completely cleared up & there's been a definite improvement in his cradle cap too.  We had to go back to using Aptamil Hungry at Easter as we ran out of Pepti & within a day or 2 the rashes were back & spit up increased.  Back on the Pepti now & the rashes are subsiding.  I am hoping that after a few weeks the eczema may clear too.  I am now convinced that cow's milk is not his friend!!!!

If your LO was fussy & refusing feeds on Nutramigen - it could be that he didn't like the taste.  What do you think? These hypo-allergenic formulas taste nasty.  We had this when we first changed over to Pepti so we did it very gradually - each day we replaced 1oz of regular formula with prescription formula.  If he had a day where he reduced his intake a lot, we'd stick at that amount for a few days, then carry on increasing.  It took around 2 weeks to change over & now he is accepting the new milk fine.  

Rash on chin & sore bum could be signs of teething, as could refusing solids - have his cheeks been red & hot too?  But they could also be a sign that the milk is upsetting him.  Some babies dont cope with the partially hydrolised milks (I think Nutramigen is also one of these) and need an amino acid based one (eg Neocate) - anyone correct me if I am wrong here!!!?

I hope for you that it is just teething & that symptoms subside.  But if they persist I would probably reconsider trying dairy free & see if the symptoms clear up.  And maybe ask for an amino acid based hypo allergenic formula if the Nutramigen didn't suit him.

HTH.xx

[Amy Quarrell]

Hello again, thank you so much for your replies.  I feel like a bit of a failure to be honest and really needed to get some other opinions.  He's on 14 weeks old and has had nothing but problems since birth :-(
After checking on the link for symptoms I think my DS may be intolerant after all :-(  Since changing back to Aptimel he has had mucus poo's, unsettled, fussing etc.......i think he may have grown to dislike the taste - if thats possible??  I've also just been looking into other feeds e.g Aptilmel Pepti as I'm now worried about him becoming lactose intolerant if he's not getting any lactose........what a nightmare!!  I really don't know what to do, I think I'm confusing myself reading into everything too much it's so hard!
We are now wondering whether to try mixing Aptimel with Nutramigen to try and get him to take it again......or should we try Aptimel Pepti - is that any better?
Thanks again, really appreciate the help
Amy x

[Buntybear]

Hi, on this board we all know how you feel xx in fact some of us have much older babies and we are still fumbling along trying to work out what they are intolerant too!

It is a good idea to mix a milk your LO likes with the Nutramigen. Just keep changing the ratios till it is more and then all Nutramigen. I understand that Aptamil Pepti is for MPI babies so you culd give that a try. TBH I don't know how much the proteins are broken down compared to Nutramigen - would be interesting to know actually.

[Amy Quarrell]

Thank you again.  I will try mixing them tomorrow :-)  Fingers crossed!

[Buntybear]

Do keep us posted. Good Luck x