MSPI and Colic

[Scubagirl]

Question for moms of MSPI babes.  Do they all cry a lot and act coliky and loose weight? The reason I ask is we are currently tryng to determine if my 4 month old son has MSPI. Some history,he was 10 lbs 5 oz at birth and 22 " long is now 16 lbs 7 ozs and 25 1/2" long. Bottle fed since birth, started on Nestle Good Start, developed excema (thought was acne) a week after birth and loose stools, stuffy nose. Switched to Soy, this constipated him, ( I understand this is common with soy) rash started to clear, congested nose gone until rash started to re-occur at two weeks. Switched to Alimentum, rash improved but could see faint marks on cheeks, then a month into it mucusy diarrhea started and rash re-flared. The doctor said to put him on pedialite for 24 hours, then half strength formula for 24 to rest the bowel, we did this, diarrhea reoccured on day three(was really bad the day on pedialite 15 dirty diapers) back to doctor who said to do the pedialite again then go half strength soy. He said the excema may have nothing to do with formula and the constipation on the soy can be dealt with while diarrhea is dangerous. In the meantime Bryce is a very happy baby, no colic, sleeps pretty good eats 35 ounces of formula  a day, sleeps from 7pm to between 6am and 7am with a dreamfeed at 10pm (lately has been waking at 4am or 5am sometimes settles after 1/2 hour sometimes needs a bottle which he eats 7 ozs from, but this is after having diarrhea for a month and wanting to eat every two hours while just on pedialite) one two hour nap in morning, an hour or two in afternoon, athough can wake a few times and need help to get back to sleep during the day, one 45 min to one hour nap at supper time. Has gained well  accept for 4 ozs lost this past week after 4 weeks of diarrhea.Can this be MSPI with no colic?

[Kayna]

My dd has a milk intolerance and is an excellent baby. She has consistantly grown well, slept well, and has a wonderful disposition. It was tough to get things figured out at first but once we got her settled in everything fell into place.

Sorry I don't have any advice about the diarrhea but wanted to share that you can have MSPI and not be colicky. Good luck.

[Scubagirl]

Thank you for yur reply. What were your daughers symptoms?  What formula are you on? Also if you keep them on  formula they are allergic to, providing they grow okay and there is no diarrhea or colic or anemia and just control the excema, what if any are the health consequences? I'm asking because it looks like my choices are either $600 a month probably not covered by insurance for Neocate, or stay on soy and try to control excema which my doctor seems to think is not related to formula. Does untreated intolerance always result in poor health eventually? I have read horror stories about kids ending up on feeding tubes?

[GraceKellysmom]

I'm going to recommend you take a look at the message forums on http://www.mspiguide.com and see about alternate formulas or ways to get insurance to cover it. Even if you could just try it for a couple weeks and see if it clears up the excema and poop issues. Have you ever tested for blood in his poop?

Kayna and I both breastfed our MSPI-ers, fortunately we found each other to muddle through that.

I don't know about long term health risks. I do know a great breastfeeding clinic in Nebraska that I can get you their number to call and talk to them about that and other MSPI questions. They seem to have a wealth of knowledge about this relatively unknown condition.

[Scubagirl]

Thanks Gracekellysmom,I have already been to that forum, that's where I learned about neocate. Also all their kids seemed to be miserable which is why I posted here to ask if that had to be present. I am in Canada so my situation is different than many there in regards to insurance. I can call my insurance company to see if they cover it if it comes to that. I'm still hoping it doesn't. I haven't had a stool test done as my doctor wants to try going to soy again first. I am going to insist on a stool test after he has been on that for a time to make sure he is not bleeding. DS just looks so healthy and happy that doctor doesn't see beyond that and dismisses the excema as something that just happens. Thanks for your help!

[Kayna]

Like Stacy mentioned above I did breastfeed Avery until she was 7 months old. I did supplement her with Nutramigen through that period and then slowly introduced soy (started with 1 scoop per 8oz and moved up from there). I wouldn't have stopped bf if she couldn't have handled soy. Avery does have a mild case of eczema as well (due to allergies I'm sure) and we treat it the same as ds (he's 4 1/2 now). I can't say for sure if the eczema is related to the formula but I can say that I probably (my opinion only, don't replace your dr's advice with it) wouldn't switch back to the Neocate due to eczema only. I would try treating that in a different way. JMO.

[victoria1]

I find this very interesting...Scuba girl I am from Canada also and I have pretty much the exact situation with my dd..except our pediatrician advised us that we should only try Nutramigen if we want. I was told by a medical resident at BC Childrens Hospital that if my dd has been diagnosed with milk protein allergy that she should be switched to a hypoallergenic formula NOT a Soy as that can cause major allergies for her later in life - however my pediatrician insisted on us trying Soy and says that only 50% of children with Milk protein allergies will develop a soy protein allergy. After switching her to soy (even though I was not comfortable with using soy due to a whole other issue ) I did seem to think everything was ok but then she started getting really dry skin patches on her face,earlobes and shoulder so I assumed that was a symptom of an allergy to soy. At that point is when I took her back to the pediatrician who advised just a case of ezcema and not to worry but if I would like to try Nutramigen I could however he did not seem to be very concerned. So I had switched her to Nutramigen about a week ago and her rashes went away however she was spitting it up non stop so I was worried she wasn't getting enough so we put her back on Soy and the rashes came back that day so we switched her back to the Hypoallergenic Nutramigen which is what she is currently on however she still spits it up non stop she seems to get an upset stomach from it which surprises me as it is suppossed to be easier to digest for them. At this point I don't know what to do...I can't get into my pediatrician for one more week so I am just hanging tough until then. My husband and I have been wandering if there is not some way for them to test whether our dd has soy intolerance or not as if she does not we would obviously want her back on the soy. I do not find though the doctors to be particulary concerned or interested in confirming if this is the case or not and it is quite frustrating.

[GraceKellysmom]

Nutramigen HAS milk proteins in it. Just because they are "broken down" (by whom?) and "easier to digest" - that doesn't mean anything to a baby that has an allergy or intolerance to milk proteins.

I particularly like your sentence ONLY 50% of milk intolerant are also or do become soy intolerant/allergic. I've heard it is much higher although 50% in my mind seems like enough of a chance.

Another option is to try to find ORGANIC soy formula or even ORGANIC milk formula and see if either of those are tolerated better. Continued exposure to regular (or any possibly) soy formula will make the intolerance or allergy (allergies will be tested for at a later age) worse. Excema is a sign of allergy, and so is excessive spit up, continued diaper rash that doesn't clear, upset tummy, blood in stools. A non-allergenic formula like Neocate will be the next option.

Possible to find another doctor that knows more about this? Pediatric allergist? Pediatrician who specializes in allergies?

[victoria1]

As a matter of fact I just met with my family doctor this am. She has referred me to a pediactric/allergist. I have an appt in 2 weeks. In the meantime I don't know what is best to do keep her on the nutramigen with her constant spit up and dislike of it not to mention the cost or put her back on the soy!!!!!!!! It can be sooooooo frustrating! That is interesting that Nutramigen still contains milk protein YET on the front states that it is for infants with milk or soy intolerance...... GO FIGURE!  I am so looking forward to my appt with the new doctor I hope that we will get some of these things resolved. I am surprised at how hard it is to find a doctor who is thoroughly educated on this issue!

[GraceKellysmom]

Please let us know what the new doctor says, ok? So the lesser of two evils for two weeks, huh?

I think its a real shame about the Nutramigen. But it is a marketed product, just like anything else we buy at the store. They are trying to increase their sales and tell pediatricians how wonderful it is for milk or soy intolerant babies. My pediatrician told me "well you could try Nutramigen or Alimentum, but I doubt they will work." I appreciated that honesty!

[victoria1]

Definitely I will let you all know what the new ped has to say....! I just hope I will get some resolution!

[Scubagirl]

Hi Victoria1. I think there are a lot of old school conservative doctors out there. They just think excema happens and has nothing to do with formula. It's very frustating when all the signs logically point to this conclusion. We are trying soy again and my DS face cleared very quickly this time, but his BM's are taking longer to decrease in frequency and thicken up, but they are.The big test will come in the next few weeks to see if the rash and diarrhea re-occur. His nose is very congested but he is just getting over a cold and too early to say it is from the formula. I am hopeful. Does anyone know what you can do next if Neocate doesn't work? I hear evn that one is sometimes not tolerated. I am looking into re-lactating but since I never breastfed either of my two kids longer than 2 weeks I'm not too hopeful I will get a full supply after 4 1/2 months. I will have to at least  supplement with something. I will be interested in what your allergist has to say Victoria1. I think I will seek help from the same source here if the soy fails. In regards to Nutramigen, it does cause a lot of spitting up, but as long as your daughter is gaining and the rash isn't there I think you will be okay. My nephew had the same spit up problem with Nutramigen but is 8 now and doing fine accept for seasonal allergies and although he can't drink a lot of milk he can tolerate some and is fine when it is in things as an ingredient. You could try Alimentum, it is the same price as Nutramigen powder but it is ready to feed, at least that is the case in Ontario. I believe in the US it is avaiable in a powder, but you pay more in the US for it anyways I believe. It is 8.99 for a pack of 4 8 oz or 237 ml cans at Shoppers Drug Mart in Ontario, some stock it but other branches you have to order it in, a case runs $41.99 and has 24 cans or 6 fur packs. My litt5le guy was drinking 5 237 ml cans in 24 hour period. The Alimentum is a little thicker than Nutramigen and it smells slightly less than Nutramigen( So like one dirty sock instead of two dirty socks LOL)

[victoria1]

So we met with the allergist and the good news is that I have confirmed what her allergies are....wheat, everything to do with milk, eggs, goats milk, dust and dust mites. I am relieved to hear that soy is ok to keep her on because this is what she likes the best. We have been given special cream to help clear her eczema and have been instructed to stop using baby wash/shampoos. We are to use glycerin soap for her body and hair and to use Glaxal Base lotion with no fragrances. As well until her eczema clears up we have been given the ok to give her an antihistamine (Reactin) each day for a week to help reduce the itching. We have made all of these changes are to follow up in 2 weeks to see what to do from here. Already I have noticed a difference with her skin and it has only been 1 and half days!!! So we will see what happens but so far seems good! Oh yeah one last thing suggested by the doctor is that stuffed animals are not good for dust/dust mites so to keep them out of her crib area. Also down filled anything is not good (like bedding, blankets, feather pillows). We do have this in our room not in hers, so we have been advised to keep her off of this! Who knew it could possibly be this simple we hope and will keep our fingers crossed!