RE: Heidi/all: Black stools-Blood in stool???

[Guest guest]

To be honest, our ped. doesn't have much involvement with the girls unless I bring them in for a virus of something. I am the one who makes sure the girls see everyone they need to see and keep all the info. I really like their ped but she only works 3 days a week and doesn't have much time to dedicate to the girls. But, she is one of the few who have any experience with Mito kids (due to going through it all with us) and has also tried to learn more about Mito due to our kids. I am not too sure I would want another doctor to have much more input anyway and Dr. Whiteman keeps track of most things at Mayo.

As far as the stool sampling, iron studies, and blood tests, I am not really sure what all they have tested. You would think they would have tested for blood since the color has been going on for a while. And iron levels I would think would have been tested in the past, but I will tlk to the GI to see what she says. I DO know they tested for several issues that could cause diarrhea and found nothing needing treatment. That was done just a couple of weeks ago.

She is not on any reflux meds anymore due to having a nissen. Her phlegm production has reduced quite a bit as well and her retching is minimal anymore unless she gets too full, so we haven't pushed for any reflux meds lately. I am thankful these issues have been much better as they were a BIG problem for a while. When she has a virus the issues become worse again, but not as bad as a couple months ago.

I was doing research online about Neocate and what is does to bowel movements and it did say that they can be dark green to almost blackish, so maybe this is all that is going on. I do feel we need to control the dumping better (if possible) and make sure there are no malabsorption/iron deficiency issues that need treated though. I will keep you all posted. Thanks for your help. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting... Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), & Marquis (2) (some with Mito symptoms)