I’m so sorry you are dealing with this with a young child. 🙁 I know how hard that can be… Can I just throw out a couple of things? A B12 deficiency can mimic M.S., so it’s always good to rule that out! Your doctor will want a serum B12 (which may be normal), an MMA, a homocysteine, and a Holo-TC to know for sure. It sounds like she’s had imaging. Any dural ectasia? Any signs of demyelination on the brain MRI? (did she have a brain MRI?) A good allergist/immunologist is a great idea, as is a complete team (I know — that’s a tough one!). Oh, BTW, if in doubt, you can buy strips for urine that will tell you if she is having a UTI or not. Believe it or not, for a while, I was having chronic UTI’s AND vaginal yeast infections, and I was hurting so much, I couldn’t tell what the pain was from! Antibiotics can make a yeast infection worse — I didn’t want to take them “just in case”. The strips helped me figure it out and may be very valuable for use for kids.
Oh! Thank you-I have pee strips I use when I help my midwife friend. That would be nice to rule out. The stand in ped accidentally threw out the pee sample we brought in….I didn’t think much about it because we were just trying to reassure the poor young doctor, lol. The Dr. had an MRI done this last fall to rule out a pituitary tumor. I didn’t know to ask about lesions, and don’t know if they would have looked? I want to assume they did and forget about it, but I have learned better 🙂 We put a diaper on her last night for the first time in a very long time. She peed in her pants, then in the potty, then fell asleep and peed on me, buckets, all in an hour’s time. Frustrated.