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Maevesmom

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Just wondering if anyone has thoughts on this. My daughter who is 7 and has had CVS since age 3 was born with an autoimmune reaction to dairy proteins from all animals- resulting in terrible skin, bloody stools, and vomiting (which I first thought was just weird smellling spit up). I nursed her for quite a few years and was myself completely off all dairy- casein, whey, any derivatives were out. As she got older (nearing 2 years) I would sometimes cheat (milk chocolate) and she would always get patchy exzema within an hour of nursing. So like very, very sensitive. At 2.5 they ran extensive testing and determined that like most kids with this issue she had "outgrown" it. Then 1 year later she starts with CVS. As a mom I have to think there is a link. Since it took me many months to figure out the CVS by then she had started eating and enjoying things like pizza and pasta with parmesan cheese. And goldfish crackers! She was so thrilled to be just like her siblings for once. So I have been in constant debate with myself over the years that I should take the whole house off dairy again. It's not really that hard at home (Maeve doesn't like milk, yogurt, plain cheese or butter anyway!) but it's things like birthday parties and snacks at school that make it difficult. So I wondered what folks here thought. Anyone else had this experience/progression? 


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carol mcmurrich
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ginny

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Reply with quote  #2 

I actually have a couple of grandchildren who are milk protein intolerant (not sure intolerant is the correct term).   At ages 8 and 12 they still don't do terribly well with milk products.

Neither has CVS.  I believe that at this time CVS is thought to be a neurological/ mitochondrial condition and that diet is not a cause.  That said, there has been a lot of discussion about diet and CVS over the years.  Many have done well with Paleo, Mediterranean, Gluten Free and other diets.  All seem to have in common Whole Foods and little to no processed foods.  

I think I would go back to her diagnosing doctor.  Also try a journal (there is one on the CVSA web page) and try to track her reactions.  Maybe she can have the milk proteins at parties in limited amounts but not too often?  I recall a lady who was a MB member saying her journal showed that she had a reaction to combinations of foods that she could tolerate in single doses.  It also could take up to 48 hours for her reaction.

A journal might be very helpful to try to correlate the vomiting with the milk proteins.


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ginny CVSA Moderator
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wynnak

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Reply with quote  #3 
I will also add that there are other conditions that cause problems with animal protein processing. Some can either quicken or slow digestion and processing, both which can also be or cause issues with CVS sensitive people.

Dairy has been mentioned several times as a trigger for people. My son, the one with CVS, could not survive with out milk and cheese. So he is not one that struggles with it. If you use the search bar and search dairy, you will see a bunch of posts about it. You may read those as well.

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