How would I know if Noah has MSPI or even just a dairy intolerance? He has normal poops, no eczema, not fussy. He had an esoph. scope and the biopsies were normal and there were no eosiniphils. The only symptoms he has is he has never liked to eat. Its been a battle since birth. He is on breast milk and Isomil. So it was suggested to me that he could have MSPI and that could be why he has always fought eating. Given he has no other symptoms or signs, what do you all think?

My feeding specialist and I both had a strong suspicion Bethy had a dairy intolerance for awhile. This was based on the fact that anytime she was exposed to milk or milk products, she would puke, become horribly constipated and would totally refuse to eat.
Her hemocult test (stool sample) showed no blood in the stool and her RAST tests all came back negative for a dairy allergy. However, when she had the endoscopy done, her GI sent the biopsies to some lab in CA and had them check her enzyme levels. We found out then that she doesn't produce the enzymes to break down milk and soy proteins.
This was how we found out for sure.

I *think* babies can be diagnosed based on symptoms. **Please correct me if I'm wrong!**

Mary,
Did the doc have to special order the enzyme testing on the biopsies or is that routinly done when a scope is done? What kind of formula is she on?

However, when she had the endoscopy done, her GI sent the biopsies to some lab in CA and had them check her enzyme levels. We found out then that she doesn't produce the enzymes to break down milk and soy proteins.
This was how we found out for sure.
Mary! I missed that update! (Sorry to go off topic)...
Anyhow I really dont have any advice or experience in that area, hopefully someone can help you.

My Noah displays severe irritability on milk and soy, and has some sort of rash that we're finally connecting to it. He's been on Alimentum for the majority of his life anyways due to suspicion of MSPI, but when we tried to go off it, it was a disaster. You could always do a 2 week trial with no milk and soy if you thought it could help.

copy and paste from other board:

Just from my own experiences and talking to other reflux and allergy moms, I strongly believe in the link between reflux, especially reflux that is not being controlled well w/ meds and MSPI or other food intolerances. AJ has mild MSPI and no reflux. Evan has MSPI plus intolerances to most other foods he's tried (hence me weaning him and him being on Neocate and rice only) and his reflux was not able to be controlled until we moved to Neocate and I went on the total elimination diet. He is an extreme case though and many get better w/ just removing milk and soy. Neither of my children have had blood in their poop from MSPI and it's not required to have that to have MSPI. Yes, extreme MSPI will cause it, but Evan's main symptom for any food issue has always been reflux, it was a nightmare those first 11 mos! I strongly suggest removing all dairy and soy from your diet (there's a sticky in the allergy forum) for at least 2 full week and seeing what happens. Also, you need to use a hypo formula, but be aware that 10% of MSPI don't tolerate hypo formulas and need Neocate, so if you don't see a difference in 2 wks and you know you're dairy/soy free, you would want to try it for 2 more weeks at least using Neocate instead. Feel free to pm me if you want. I was dairy free from Evan's birth, soy free from 2 mos, egg free from 5 mos, and free of everything but about 5 foods the last month I bf him.

I'm not sure about MSPI being related to gd, but it's sure an interesting theory. I never had gd w/ either baby,but both have it.

Maya has had poor feeding like Noah and two GIs gave her the MSPI diagnosis. We were very sceptical of the diagnosis and Maya did not do well with Neocate and went back on a milk based formula before her feeding went downhill again. When we tried the second hypoallergenic formula, we noticed a difference in her behaviour. She became less agitated and seemed happier in herself. But they do taste revolting and are very thin, so it was hard to get Maya to tolerate it and we had big time feed refusals. We tried sweetening her bottle with vanila nesquick, thickening it and hand blending it for consistency (Maya is hard work). Maya now is taking 20oz a day of formula, going from a position of taking 8 oz a day. She still refluxes a bit, but she is happy. The other point is that on a milk based formula she was constipated and on this formula she goes several times a day. So behaviour and constipation issues are a good sign of intolerances. Also my GI reckons that failure to respond to PPI drugs could signify a reflux so it may be beneficial to have a trial on a hypoallergenic formula. But be very wary of the taste issue. Noah will not like the taste at his age and I think you will have to resort to flavouring to get him to take it. If you need advice you can ask us for help?

Mary,
Did the doc have to special order the enzyme testing on the biopsies or is that routinly done when a scope is done? What kind of formula is she on?

Bethany is breastfed; however, I am slowly introducing Enfamil Lacto-Free in her sippy cup. We are doing this instead of regular milk for her (she's 14.5 months old) so that she'll get the extra calories.

I'm not sure if the GI ordered this as a special test or if it is done regularly with the endoscopy. He gave me the impression that he did it especially for us.

I forgot to mention...at around 12 months, we tried whole milk (AUGHGH! Constipation, puking, refusing to eat), then tried soy milk/formula with the same results. So far, I've been mixing the Lacto Free forumla with her cereal and giving her equal parts of b'milk and Lacto Free in her sippy cup. No problems yet.

We were told to avoid dairy in all forms; however, Lactaid milk and cheese is okay, as it contains the Lactase enzyme (the one Bethany lacks).

I hope this helps!

Mary, IMO if Bethany truly lacked the lactase enzyme, she'd not be able to handle bm as it has more lactose than cow's milk or formula. For the babies that do have glactosemia, (infant lactose intolerance that you're born w/), lacto-free formula is not reccomended for them. It sounds like MSPI to me, but possibly a mild case as the lacto-free formula is broken down somewhat so some kids do seem to be o.k. w/ it. Personally, I'd skip it and any dairy for now.

Mary, IMO if Bethany truly lacked the lactase enzyme, she'd not be able to handle bm as it has more lactose than cow's milk or formula. For the babies that do have glactosemia, (infant lactose intolerance that you're born w/), lacto-free formula is not reccomended for them. It sounds like MSPI to me, but possibly a mild case as the lacto-free formula is broken down somewhat so some kids do seem to be o.k. w/ it. Personally, I'd skip it and any dairy for now.

Thanks for the info. We are both totally dairy and soy free at this point and I've noticed HUGE changes in her already. Her lactase level was 3 (with 15-25 being the normal range, if I remember correctly), so the GI said this is the concrete evidence that she doesn't tolerate lactose. We got the diagnosis; however, I must admit I don't know much about it beyond what we were told. (Just posted our experience to another mom of a baby w/ suspected MSPI re: her question about formula. I'll go amend that asap.)

Can you explain more about glactosemia?


***Adendum...another mom PM'd me re: this issue. I ran downstairs and looked at the paperwork from the endoscopy and the GI very clearly wrote "MSPI". However, lactose is not a protein...
I'm calling his office ASAP tomorrow. I think there has been a mistake in Bethy's diagnosis...?

I know for us, it was a totally by chance that we figured it out. And me, dr. mom figured it out. My ped. told me to put Jackson back on regular Enfamil after we figured out that he had reflux and was on med. I did, within a day his congestion was 100 x's worse, both of his eyes were red and watery. Then he REFUSED to eat. I mean refused, I would fight him and finally get maybe 2 oz. in him. This went on for like 5 days, we went to the ER to see about ears, throat, etc., nothing! Then a lightbulb popped on, the milk! so my dh went immediately out and bought more Nutramigen and he took that bottle with no problem and his eyes cleared up. His nose is still stuffy, but not nearly as bad. Amazing, these kiddos know!

Galactosemia in a simple definition is infant lactose intolerance. There are 2 forms, one is worse than the other and you can end up all right and just end up being a carrier instead. They actually test babies for this in most hospitals now when they do the heel stick and the huge panel of metabolic disorders. Basically w/in weeks of birth your child is extremely ill, loses lots of weight, can have a rash etc, and the body starts to shut down. A child w/ this is not able to bf and has to be on soy or hypo formulas.

My friend's ds#3 had this, but the milder case and was able to have normal formula by 6 mos or so, but would be considered a carrier now of it.