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Old 08-30-2009, 07:47 AM   #1
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Katrina221 HB User
I need some help, not sure where else to go

Hi there, my name is Katrina and this is about my daughter. She is currently 17 months old. When I was pregnant they saw that the way her spine formed was abnormal, however to this day i have yet to be given a name for it. I can go into detail and explain it, but it may not make a lot of sense. Basically one of her vertibres only partially formed and this caused her spine to curve back, then instead of the next vertibre continuing from the bottom of that one, the next one actually grew from the front. Essentially it cause extra bone that you can actually feel when you touch her back. This causes her spinal cord to strech and she also has fluid in it. Recently we went in for another check up and when they did this x-ray the dr actually told me that her spine was completed dislocated and he was surprised that she was even able to walk. I told him he was wrong and that the picture was not showing everything he needed to see. Regardless, my daughter has gone through numerous x-ray and mri's since she was born. Now we are going to mri's and ct's. It is very likely that she is going to need to have surgery much sooner than we had hoped. Essentially, I am trying to find out if anyone knows of organizations I can go to for help. I do have insurance, but even the bills after are outrageous and I don't want my financial situation to be the reason my daughter can't have the treatment that she needs. Does anyone have any clues as to something that i may be able to look into? Thanks for taking the time to read this, any help is appreciated!

 
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Old 08-30-2009, 09:32 AM   #2
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Re: I need some help, not sure where else to go

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
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 08-30-2009, 04:07 PM   #3
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Re: I need some help, not sure where else to go

Your daughter needs to see a pediatric ortho doc that specializes in spinal deformities, and a neuro doc. If you have a Shriners hospital near you, have her doc refer you there. As far as I know all the care at a Shriners hospital is free. Hope you can find some help soon!

 
Old 08-30-2009, 04:44 PM   #4
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Re: I need some help, not sure where else to go

Mytwoboys is right in suggesting Shriners Hospitals but make sure it's an orthopedic hospital and not a burn hospital. They offer both and have the best docs volunteer there and and care is free. Many offer free accommodation for parents as the way to fix the spine is a long term situation. We have an ortho hospital near us and a burn hospital about 2 hours away and they are "magical".

good luck and gentle hugs...............Jenny

 
Old 08-31-2009, 07:30 AM   #5
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Re: I need some help, not sure where else to go

great suggestion guys. i know we have one here too fairly close by. i had another suggestion when i read that first response? it just kinda popped into my head. St Judes? they too will treat children for free. just two places that are amazing and would take great care of your daughter too. i would most definitely look into both options and see what you can get done or how close you are to one of their facilitys. and please keep us posted hon, good luck again, FB
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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