mspi help - not sure who to listen to

[chasehutt]

Hi Everyone,
Ok so my ds was given diagnosis of milk protein i, around 3 months after a serious of events - pyloric stenosis and reflux and of course my giving up all diary but still testing positive for blood through hemocult test in stool. So as soon as we gave him alimentum he cleared up and did well. Ok so hes now 7mo, we've been dealing with lately blood in the stool and we had no idea why. he was not getting any milk protein. Anyway he was sent to an allergist as well as continuing to see our Gastroenterologist. The allergist test his skin, through skin prick (two weeks ago) for milk allergy and also for oatmeal. It was negative. He said its very accurate. He then sent us to get blood work done to firm it up - Im still waiting on the results of the blood test. Now in the meantime I have been back to the GI specialist to try and firm up why my ds has blood in stool (after stopping all solids including cereal). Finally he went clear after about 10 days. Anyway, we were with GI yesterday he did sigmoidoscopy, saw no colitis but did biopsy to test for reaction to alimentum (allergy). I asked him about giving my son regular formula and milk products because the allergist said he was not allergic. He said that the skin test and even blood test is only 50% accurate in infants. The allergist said its 97%.

So Im not sure who to listen to about the milk protein thing. I wondered if anyone else has had similar experiences. Now mind you we have to find out why he has blood in his stool before doing anything but I would love to be 100% in my knowledge of whether he has milk protein allergy or not. I have not talked in detail about the intolerance, however my GI (I THINK) said that it would not cause blood in stool.

Thanks in advance - I hope this makes sense

[Mashi]

well, i have always heard and been told by our own paed GI that the tests for LOs are not very accurate. 50% is the stat he gave me as well. i do think that the blood test can be more accurate than the skin prick.  tbh, i wouldn't be sure who to listen to either!

alimentum DOES have milk proteins in it, it's just that they are hydrolyzed, which means broken down into very small digestable bits. for MOST milk intolerant/allergic babies they are broken down enough, but many LOs need them broken down completely - and hence go onto a fully elemental milk (such as neocate). 

the other thing is, just because your LO isn't allergic doesn't mean he may not be intolerant.  fine line of difference, really.  allergy is an immune system reaction, intolerance is a digestive system reaction.  so if his bowel cant digest the milk proteins it does not mean that he can have it, and that he would test positive on an allergy test.  i don't know much about the scope that your GI did, but i suspect he was looking at the bowel for damage that would show intolerance?  not sure.

don't know much about blood in the stool and why it would clear up for a while and then start again.  don't know if i have answered your questions or helped at all, but just wanted to share what i know until someone else comes along!

hope that is of some help.  and hugs in the meantime while you sort out what's going on.  i hope LO is okay!

[MLK]

I was told the skin prick test were not very accurate in babies too. At this age elimination and challenge (if are up for it!) is the most reliable way to tell - especailly  since you've got a pretty obvious reaction like blood in the stool!

Mashi's right about the allergy/intolerance thing, too. I hope you get to the bottom of it  - we've had blood in stool too and it's scary!

[Spectra]

Yes, even though the allergy test showed negative does not mean he isn't intolerant.  Most babies are intolerant, not allergic, to the milk, and that will NOT show up on ANY allergy test as it does not affect the immune system, even though the symptoms are similar.  My son, for example, also tested negative to milk allergy in the skin pick test and the blood test.  However he still reacted badly to formula, even on Alimentum he had eczema and runny nose.  He had to be on Neocate for him to be completely in the clear.  I've also heard from other mom's here that lo's can have blood in their stool from being intolerant, not just allergic.

[chasehutt]

Thanks ladies, I think that maybe its getting confusing with adding in the allergist and the gi treating it like an allergy. he said until hes one to avoid all milk products and protein and we have to be very careful! Obviously the allergist treats it less problematic because hes not going to die from it according to him. But I think Im begining to see that his intolerance can cause just as much discomfort. Im hoping we find answers soon. They did talk about switching to neocate. We'll see! ahh the joys! Thanks ladies. I think I will follow my GI, the allergist said I can just give him regular formula etc. Also my pediatrician did the same thing. Although I havent been that comfortable with my pediatrician lately.

[chantelle]

hi
my ds was tested for lactose intolerance which came back as negative so they are now treating him as protien intolerant they say there is no actual test to show this but since he was put on neocate milk for this he improved straight away .
chantelle