Wednesday, June 13, 2007

Milk Soy Protein Intolerance

Unfortunately, this is the first in what will be a long and ongoing series of posts about Bovine Protein Intolerance. It is also referred to as Milk Protein Intolerance or Milk/Soy Protein Intolerance (MSPI). For simplicity (and hopefully some Google action) I'm going to call it Milk Soy Protein Intolerance.

Our son, the Curious Boy, was diagnosed with MSPI at 4 1/2 weeks, after we found blood in his diaper. Philosophermom went on a restricted diet, eliminating beef, soy and dairy. CB outgrew the intolerance at 10 months (75% outgrow it by 12 months, more than 90% by 2 yrs).

According to our allergist, MSPI appears to be hereditary (talk to my mom), and our other children would be at risk of having MSPI as well (about 50% for a girl, greater than 80% for a boy). When Zen Girl started showing signs of increased fussiness and a green, mucus-y stool at about 2 weeks old, we decided to test if she was suffering as well. After a few days, her stool returned to yellow, and she was once again living up to her name.

There are very few resources online about MSPI, and many pediatricians are not even aware of the condition. I'm hoping that we will be able to share some of our experiences and strategies with you. In addition, I will be posting lists of prepared/packaged/restaurant food that is safe for breastfeeding moms who need to eliminated dairy, beef and soy from their diet.

17 comments:

Laurie said...

HELP! My baby was diagnosed yesterday! I breastfeed and need help with the diet! Thanks!

Michael Lautman said...

Laurie... take a deep breath. You can do it. The Philosopher Mom wants you to know that breastfeeding is still the best thing you can do for your child. Keep checking the blog for more info... if you want, you canemail me (philosopherdad[at]gmail[dot]com.

Greg said...

I just weaned my 11 month old mspi daughter. It was so hard to stay on such a restrictive diet for so long but worth every day of it. I found Whole Foods Organic Grocery Stores to have a wide selection of treats. There's also a bakery, Babycakes, here in NY that ships soy/dairy free goodies.

How'd you know your first had outgrown at 10 months? I never challenged again after the first few months. We are hitting the one year mark and concerned about what to give her.

Greg said...

I just weaned my 11 month old mspi daughter. It was so hard to stay on such a restrictive diet for so long but worth every day of it. I found Whole Foods Organic Grocery Stores to have a wide selection of treats. There's also a bakery, Babycakes, here in NY that ships soy/dairy free goodies.

How'd you know your first had outgrown at 10 months? I never challenged again after the first few months. We are hitting the one year mark and concerned about what to give her.

Brad & Julia said...

I'm breastfeeding my third child and he is the second of my three to have these MSPI symptoms. Neither of my kids were ever diagnosed. My pediatricians and nurse practitioner didn't seem very aware. I just heard the term MSPI today!

I also found out there are many helpful cookbooks already out there. I was thinking of writing a cookbook/guids myself because I couldn't find much information on the subject.

Just search for cookbooks written for people with a food allergy. There are quite a few! Enjoy food again!

Lisa said...

Thanks for your blog - it's been informative! I agree that way more information is needed out there regarding MSPI. It took me what seemed like forever to get my twins diagnosed, but they have been doing so much better! Unfortunately I couldn't breastfeed, so they were placed on Neocate.

As they're growing now, I'm wondering how to test for continued intolerance. They've become such happy babies I'm scared to go back to when they were always in so much pain! You said Curious Boy outgrew his intolerance at 10 months. How did you test and how did you know? I'm starting to think about the fact the doctor wants them off Neocate at a year and I'm not sure how to test to make sure this is ok. Any advice/suggestions would be appreciated!!!

Ramona said...

Too love it in the form of soy shake from Revival Soy.

S.C. said...

Our daughter, LittleChimpette, was diagnosed with MSPI a couple of weeks ago. Initial symptoms were blood in the diaper, progressing to screaming fits (presumably from gas). Interestingly enough, she still slept through the night and nursed without trouble.

After two weeks on a dairy/soy elimination diet (which were the two largest food groups in my poor wife's diet), the shrieking has almost completely disappeared, her diapers are less liquid, and the blood has almost completely disappeared (occasional spotting, but nothing close to what it had been).

The diagnosis was originally as an anal fissure when the blood started, and the pediatrician took a wait-and-see approach (after ruling out the severely dangerous conditions). The condition fluctuated for a couple of weeks, and then we took her back in, this time with bloody diaper in hand. The pediatrician we saw that day immediately was able to diagnose MSPI and give us the dietary bad news, along with a can of powdered Similac Alimentum. The can was in case my wife couldn't handle the diet, or if the condition got significantly worse before the proteins could work their way out of the baby's system.

Ten days into the diet, and things are going much, much better. There's hope!

Jolicoeur said...

Do some MSPI kids not have the most severe symptoms? My still breastfeeding 3 1/2 year old can eat hard cheese, but anything softer and any soy-based product starts a cascade of diarrhea followed by constipation and, if continued, anal fissures and perianal and full body rashes. Yet, he has no growth issues and he is exceedingly (too??) active. I'm stumped. Any ideas out there? Thanks,
kphebert@hotmail.com

Darci said...

My 5 week old daughter was just diagnosed I am committed to continue nursing, I need to find foods I can eat, anyone know where I can find info and recipes?

Michael Lautman said...

Darci, A great starting point is the milk intolerance wiki which you can find at http://milkintolerance.wetpaint.com.

That's where most new stuff is being linked to. You can share your story and get advice from other parents of MSPI kids.

Michele said...

My daughter who is now 19 suffered with MSPI as an infant. She now suffers from numerous health problems. An unspecified form of rhumitoid arthritis is latest. Any other parents with older kids who suffered with MSPI who have cronic illnesses as older children? Just wondering if there is a connection.

Leslie said...

In reply to Michele, you might find the book 'They are what you feed them' by Alex Richardson interesting. She has a bit in there about how food intolerances can lead to leaky gut syndrome which can lead to autoimmune disorders. I am not at all informed, but isn't arthritis an autoimmune disease? Sorry if I'm wrong. But it's a great book, none the less. So much research needs to be done ... but she also explains in the book why it doesn't get done.

Also ... as an aside to others ... Susan Reimer has a great muffin cookbook which is fantastic. YOu can substitute rice milk for any milk in the recipe and she gives a vegetable oil alternative to butter in each recipe. Also ... if you have egg problems (as both my boys do) you can substitute the egg with some applesauce. They are wonderful and definitely help to fill the void in a dairy and soy free diet!

amna said...

Hello Michael

I just stumbled on to your site and heaved a sigh of relief...my 4 and a half month old was recently diagnosed with an allergy to bovine protein. I am still breastfeeding but even though I have eliminated dairy and eggs from my diet he still has occasional bouts of inconsolable crying (a lot less, I might add since before I started the elimination diet). I am also topping up with a soy based formula the paediatrician prescribed. Can you help me with what types of foods I should eliminate from my diet? Or tell me where I can find a list from?

Many thanks
Amna

amna said...

oops, sorry the formula is not soya based!

Thanks Amna

Michael Lautman said...

Hi Amna, I think that you should check out milkintolerance.wetpaint.comwhich is a wiki for parents of milk intolerant kids... you can ask questions and share stories...
Good luck

Anonymous said...

I have a 10 month old baby who started constant spitting up at 3mo, he would never breastfed so had been eating soy formula his whole life. Two pediatricians and a prescription to zantac later we went to a GI doctor. We told her the same story we told every other doctor, the constant spitting up was really the only issue. He had always been in the 80-90% for growth, he loved to eat, was never seeming like his tummy was upset no gas and the spitting up didn't seem to phase him. He has been sleeping through the night since he was 2 mo. She then did a rectal exam and determined there was blood in his stool and immediately diagnosed it as a milk and soy protein allergy. We were told of this formula (double the cost of what we were using), and that it was amino acid based and should work. Well a couple cans into the formula and cutting out all other diary in his diet he is still spitting up. He also has a harder time sleeping, and by that I mean almost impossible to get him to nap and even then its maybe for 1-2 hour for the whole day; then again a fight at night and sometimes he stirs and cries in the night. My husband is having a hard time with this diagnosis. He was allergic to milk as a baby and had soy formula and was fine. I keep trying to explain to his whole family its a protein allergy; but when I'm not finding much relief its hard to keep arguing. My husband wants to try alternatives like goats milk, but my baby isn't even a year old yet, already a little anemic and I feel if we just keep switching his diet we will get no where. I'm really losing hope here and scared for my child's health. I'm already 5 mo pregnant with my second and feeling very overwhelmed. I need help!! (jcourvl@yahoo.com)