*UPDATE* MPI causing eczema )-:

[Austin's mom]

I have been through a long (12 out of 14 week old) battle with my sons Pead about his spit up and a rash on his forehead, face and scalp. I was told it was reflux and cradle cap. Now, after alot of research, because as a licensed Esthetician, it didn't make sense to me that my son would have a seborrheic condition, when he clearly had extremely dry skin, not oily. The rash was also extremely irritated by heat and laundry detergent. After extensive research, i find out that it is eczema, caused by a MPI. To make a long story short, I was told by the pead to try soy.

 What i am wondering, how long do I try soy, before moving on to a hypo formula? I am going to start transitioning oz at a time first thing tomorrow. I  expect this to be fairly difficult, because he is extremely picky about taste. I dread having to go back to neutramagin or allimentum. He is on similac sensitive right now, because he is extremely lactose intollerant. It made a significant difference, but not enough. Any one with this experience?

[scarlettsmom]

Hi there.   (((hugs)))  It can be very frutstrating and overwhelming to be constantly "proving" your child's allergies/intolerances.  You're doing a great job being an advocate for your LO!

Regarding the soy milk.  Since you said he is very picky about taste, changing to soy and then possibly a hypoallergenic like Alimentum, or even Neocate, will be lots of transitions.  Do you have a choice?  Can you just go straight to hypoallergenic?  Or do you need a script?  If you have to trial the soy first, if there is a reaction to it you will see something w/in the first 2-3 days (possibly even sooner).  Lots of LOs with MPI have soy intolerance as well (although many do not), so it is possible he will have a reaction. 

Is he lactose intolerant AND MPI?  There is a difference....lactose intolerant is an issue with the milk sugar, MPI is an intolerance or allergy to actual milk protein.  That will make a huge difference in your next steps.

 

[Mashi]

Were you on Nutramigen before? If so did you notice improvements in his skin then and why did you go off of it?

I think that at his age, even if he is picky with tastes, the change should not be too too difficult to manage...it might take a slow gradual change for him but he's still very young and a gradual change should be accepted in time. The change from regular formula to soy was no problem, he didn't notice the difference. Soy formula is apparently sweeter than regular formula so it may help him take to it better.

In terms of how long to trial soy, we stayed on it for a week, though I think the paed asked me to give it two weeks before switching because of no real improvements (and thus meaning he was soy intolerant as well). I did use the soy formula to mix with the Nutramigen to get him used to it, we started about 60:40 of soy:nutramigen and every 3-4 days reduced one ounce of soy and increased the nutramigen. It took about 3 weeks total to get down to full nutramigen.   


Also wondering about the lactose intolerance. True lactose intolerance in infants is extremely rare.  Temporary lactose intolerance, as in that which results from a tummy bug and goes away in 3-4 weeks is common, but a true lactose intolerance is not. It's something that we tend to grow into as our digestive systems are damaged throughout life.  Not to say that means it is not possible, it surely is. But it is very rare.   Just that when you say the Similac Sensitive made lots of difference but not fully, i wonder if it also has partially broken down milk proteins (like the comfort milks in the UK) and that is what is actually making the difference for him rather than the lactose, kwim?

[Austin's mom]

thanks ladies. We are on day 2 of the transition to soy. I did 1/3 soy today and he took it pretty well so I plan to go to half and half for then next few days. Maybe I should have gone right back to nutramigen, but i guess i thought soy would be worth the try. The Hypos are sooo expensive too.

He was first on nutramigen for a few days at 5 weeks when I had to start supplementing my breast milk. I didn't notice any difference, because he was primarily on BM, and I eat tons of dairy. But after i was told by the Dr. that It was impossible and that he wasn't having a reaction, we switched to enfamil premium lipil. He continued to have alot of reflux and occasionally vomit, which eventually increased to every day, which is when I knew there was something wrong. I tried the gentlease, which helped for a few days, but then he started vomiting again. (I hate that I have put him through all these changes!) Thats when I tried the similac sensitive. I just read yesterday, that lactose intolerance in babies is often times a secondary problem caused by the MPI damaging the intestins. He has been diognosed with MPI, I don't know about the MSPI yet. So like you said, It probably was the comfort proteins that helped some, but i really do think the lactose is at least irritating him a little.

Now is Neocate a prescription formula? I keep hearing about it.

I guess its the waiting game now, to keep working him onto the soy and see if he gets any better....

[scarlettsmom]

Neocate is non-prescription in the US, script is needed in UK/Canada I believe.  However, you can (should) get a prescription for it from your allergist if your LO needs it, in the US, because your insurance will cover it, or most of it.  It is VERY pricey.  The proteins are even more broken down than Alimentum or Nutramigen. 

GOod luck with the soy, it would be fantastic if it worked!  Keeping fingers crossed for you!

[Austin's mom]

Ok... Like you all said would probably happen, soy was a no go. I only got to half and half for the last few days and his rash is sooo much worse. And he is already quite constipated. It's the only thing I've changed. So now is hopefully (fingers crossed) the last transition he will have to make to nutraminagin. I think he will probably be ok with it, once he is completely on it. I will definately try to get a script because it is sooo much more expensive. I'm hoping insurance wil cover it, though we are probably going to have to change policies soon due to my husbands job. Thanks so much for answering so many of my questions... I had planned to breast feed exclusively, so I hadnb researched anything about all this, so I still have alot to learn. I don't know what I would do without the BW family!

[Austin's mom]

Just out of curiousity, do you know the percentage that nutraminagin and neocate are broken down?

[Mashi]

Not sure the percentage for Nutramigen, I am not sure that they consider it percentwise? It's usually just explained as being a hydrosolate formula with the proteins "extensively" hydrolysed.  Neocate is called an "AA" formula, the AA standing for amino acid, and the proteins are fully broken down into their most basic parts (amino acids).  Nutramigen makes an amino acid formula as well, called Nutramigen AA.   

Usually most doctors will have LOs try the Nutramigen first, as for most LOs it is enough. Severe milk allergy or intolerance though and you will need to get onto an AA formula - but it does taste MUCH worse!

[Austin's mom]

Oh ok. So good to know! His skin is just terrible today, the rash is covering his belly, chest, bottom and part of his face. The eczema patches are much worse on his head too )-: I hoping that soy gets out of his system asap!

[Austin's mom]

ahhhh.... so after being on half nutramigen, half similac sensitive (trying to slowly transition still) since friday afternoon, the soy rash went away completely and the eczema cleared up. But now this morning, he has broken out again in one of the worst rashes yet, and there is alot of mucous in his poo. Im soo confused. We have a  dr. apt in the morning so I'm hoping they will have answers... but Im not counting on it. I may have to just ask for a referral to an allergist or a pead GI? This is sooo frustrating because I don't know what its from!! Also changed his body wash to aveno baby, but we did use it saturday, and he didn't seem to have a reaction then. So I'm clueless.

[Jimbob]

It could still be the aveno baby body wash as quite often it is not the first time that something is used that will cause a reaction it is the second or third. I know this well from trying to find suitable sun cream for my ds. Having said that the fact that there is mucous in his poo would suggest it is something he is eating. It is possible that it is the nutramigen especially as you only used it for a few days before.

Kelly

[Austin's mom]

So we are on day 7 of Nutramigen, and the eczema on his belly seems to be healing pretty well.. still there, but healing. I'm just wondering how soon you think all his symptoms will be gone? I read one place 2 weeks, another, half as long as he was on them....what is the right answer?

 His poopy diapers are changing alot too, but they are confusing me. He went from having one super dark green, thick, extremely stinky diaper every other day, to one of those every day in the afternoon, and a new, non-stinky, light colored, like tan almost, one (with a tiny amount of noticeable mucous) first thing in the morning as well. What does that mean? Is it just his body adjusting to the new formula and cleaning itself out?? The ring around his bottom is still there too, and just as red and irritated as ever, if not more so. The Dr. said to put vaseline on it since diaper rash cream makes it worse.

Anyone have a translation for what his body is doing??

[Austin's mom]

Ok... So after a severe reaction to nutramigen by day 9... Dr. recommended alimentum. We just completed day 5 on it... and his rash is coming back with a vengeance. (It cleared almost completely up during days 2-4). Now he has eczema/rash on over 60% of his little body. His scalp, face, chest, belly, bottom, and patches on  his legs and new ones on his back. I feel sooo bad. It makes me feel like I'm feeding my child poisin. We had his 4 mo check up today, and the dr. didn't want to test him or move him to neocate or anything before sending him to the allergist. So I feel stuck and not sure what to do during the mean time. His apt isn't until April 21st, unless I can get him in on a cancellation.

Any advice on what to do in the mean time? I'm just trying to treat the symptoms best i can but i don't feel like that's enough. Should I experiment with neocate my self? Keep feeding him something that is clearly hurting him?? I have no idea. Oh, he has only gained 1 oz since his last apt like 3 weeks ago. Normally, he gains at least 1/2 to a whole pound during this time frame. )-:

[scarlettsmom]

I'm sorry, I just saw this!  (having pc issues).

Oh, poor little bub.   

I have to preface my input by saying I'm not a dr, or allergist, or nutritionist or anything - but honestly - yes, I would switch to neocate myself asap.  There is clearly something wrong with what he is eating now. 

And  to the ped for wanting to wait when your bub is suffering so. 

Hang in there...

[Austin's mom]

ok... so we just got in to the allergist this morning! I'm glad that I took pictures last week when his eczema was flared, because it is much better now (at least he could see I wasn't imagining it!). The problem is that I can't tell if the rash went away on its own or not, because his pead said to use hydrocortizone to get rid of it. Naturally the day after it goes away, we get an appointment.

The allergist said he definitely has eczema, and MSPI. But, when he did the scratch test, Austin didn't react to milk or soy.  It kind of confused me, but he said that its because he has been on the hypo formula for a while now, so his body is not reacting. ....sooo he said to stay on alimentum for 12 weeks and then do a trial with milk again. I'm still not sure if he isn't reacting, because of the cream I slathered all over his body. Go figure. but, at least for the moment, he is much better. His bottom isn't as red either, which might be a good sign, but not sure. So hope and pray the Dr. is right and he will be OK on this... but in case he isn't then I will try the neocate.

The other problem, is that his reflux is still much worse... spit up over 15 times yesterday, and soaked I cant count how many bibs. or how many puddles I had to clean off the floor. Even when I held him completely vertical. So now I have to figure out what the cause of that is, if it is the formula, or a reflux related (or worse) problem. Such a puzzle!!