Thursday, March 19, 2009
What has been the most frustrating thing about your dealings with MSPI?
My most frustrating thing is that DS will have normal yellow/seedy diapers and I think "oh good, the protein is out of our systems" and then BAM - we get 5 green/bloody diapers in a row. It's so frustrating! And to make matters worse - I can't seem to find anything that says if this is normal. It just says that it can take a couple of weeks for symptoms to go away. It just doesn't make sense to me that the blood would come and go - and diapers can be normal and then back to "bad". We're off to the doctor again this afternoon...but he doesn't seem to be much help. We'll see what he has to say!
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The most frustrating thing is having to be careful when eating out. Various breads, butters, sauces, etc. are filled with hidden milk proteins and I don't want to cause DD any unnecessary discomfort.
ReplyDeleteI agree. I hate it when we get a good diaper and the next one is all green with blood! Gets my hopes up! How much blood is in DS's diaper?
ReplyDeleteOh! I don't even want to think about eating out! All chicken nuggets have milk in them, did you know that??
ReplyDeleteThe blood comes in different amounts. Sometimes it's just literally one spot. Sometimes it's streaks throughout. All is bright red though...so that's better than black - which would be bad!
ReplyDeleteI did not know chicken nuggets have milk in them! Do the crispy chicken sandwiches from McD's too? ::running to check McD's website::
Finding stuff to eat, GAH! And reading labels. My sister and her daughter are both allergic to milk or soy and luckily I have her as a resource, but still!
ReplyDeleteI have suspicions that this may be going on with my DS. He only has the green/mucousy poop with little bloody spots once every few weeks. I've never even heard of MSPI. :o( I'll have to do my research. I was suspicious of soy so I've given it up but I'll have to read up on the dairy too.
ReplyDeleteMy "pediatrician" really really sucks (we see the base doctor) and I even had to remind them to weigh and measure him once so that should tell you something.
So far the most frustrating part is being clueless. DS was diagnosed Wednesday and they just told us to use soy formula if we had to supplement again. No one has given us any resources or details. I don't even know where to start on cutting dairy out of my diet.
ReplyDeleteI completely agree that it is SO frustrating to feel like we're making progress and then see scary poop again. It's also frustrating to hear that things would improve in 2 weeks then told that it can take a month!
ReplyDeleteEating is difficult in general but eating out is the worst! I've only ordered a lettuce salad with grilled chicken on top, no seasoning, and oil & vinegar.