so sorry for the situation with your daughter. that has to feel just horrible considering everything. i am suprised that given all the actual testing they have done that they have not told you anything about even "possible" diagnosis here. personally, just knowing some stuff about spina bifida, this is the direction i would look to for possible reasons or an actual real Dx of what this just could be. what you described just really does sound like some level of actual spina bifida(there are just various forms of this as far as how it can present). i am sure if you looked this up and just compared her symptoms and seen how this plays out/presents, you would see alot of possible similarities to what your daughter is dealing with here. it is a neural tube defect that is created while the babies spinal cord/column is actually forming. but this is what i would look into first as a possible diagnosis of what she may be dealing with.
one other thing that you really need to be doing since she just has a condition that will require ongoing care is obtain any and ALL testing results from any and every single type of test that she has had done. also start obtaining all medical records from every single doc or medical professional that has simply laid hands on her. those medical files from all of the docs contain their overall "impressions" of what they think is going on. so they are just REALLY needed right now. trust me, you will find a ton of very very useful/helpful info in the docs clinic visit notes, which those records just contain. and the test results would also give you some very useful info too. this is what i had to do when my youngest son went into liver failure many years ago. that file went everywhere with us to all doc appts and every single ER visit too since that test info is just SOOO helpful to have to show any ER docs when or if she ever has to go that route.
but you DO have that right to ask any doc for any info on your daughter and to simply ask any questions you feel are needed so YOU can better help in caring for her and moreso,to better advocate for her since she cannot do this for herself. she is looking to you for that. its just something you have to do for her now like in no other type of situation. i had to really stop being intimidated by docs and espescially the specialists when my son got sick. tho i would hardly advocate for myself back then, being that this was my child. i could get pretty dang demanding at times when certain things were eithe not being done for him or they were doing stupid things TO him while he was in the hospital. this is just the way things are going to be at least til you find out exactly what this is and what treatment options are available to her. i am pretty certain that there just would have to be some type of spina bifida orginization that you could possibly seek some help from in at least some ways? that what i would try and locate right now if i were you. this just REALLY does sound alot like what this actually is,in some shape or form. tho i am not a doc. the signs and symptoms just kind of match in what you described here so i am merely assuming this.
whoever her main treating doc is right now, THAT is the one to really start asking and if you have to demand some answers as to what he 'thinks" her actual condition is. you just have alot of rights here to obtain any info on your own daughters condtion and of course the records and test results too. any and all of the important records and test results can all actually be obtained by simple phone calls made to the places where her tests were done and just calling any of the docs offices and telling them you want copies of ALL of her medical records for your own files. you just really DO need to start getting all of this stuff anytime it accumulates,with the docs,like every six months, but with ANY new test results she will be getting,you can actually usually obtain a copy right away or from any doc that is going over them with you? just tell him to make a copy for you. but do go out and get some type of an expandable folder/file type of thing to just keep this stuff in that you can carry with you to any appts or any er visits too. it helps TONS, trust me. you should be able to obtain one right now with all the back to school sales going on that would be really a good one.
again, i really am sorry that your daughter is even having to deal with this at all, and you too. it does suck to see our children have to undergo some pretty awful situations when medical crap just hits you. just try and get that info and see what you find when you compare symptoms to spina bifida hon. this just really does sound like it, in alot of ways. but there are also other types of neural tube defects that are possible too, but just asking her main doc about what he or she thinks, well, they should be able to give you SOME idea by now. good luck to you and your daughter katrina. please do keep me posted as to what you find out. FB
