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Old 02-14-2007, 03:53 PM   #1
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buckaroo53 HB User
Unhappy Worried about my daughter

Hello to all:
I will get right to the point. My daughter is 16 years old, and has excrusating pain on her left side of her body. I have taken her to doctor after doctor. They do blood work, an MRI, and what i call field tests. Where they make her do things while they watch. However this is very painful for her and she ends up crying as well as i do to because i have a hard time dealing with her being in that much pain. So anyway, if the doctor touches her fingers she starts to cry if the doc touches her legs she starts to cry. Also a few other symptoms that she has are, stumbling, weakness, sensitive to sunlight, mumbles words, forgetful, but most importantly, pain, alot of pain. I am so tired of the doctors tell me that there isn't anything wrong, because like i tell them, your body doesn't hurt for no reason. She isn't depressed, as that has also been suggested. Yes, she is sad that she has this going on, and it keeps her from her normal activities, but on the norm she is not depressed. Any suggestions, would be greatly appriciated. I am at my wits end. J.

 
Old 02-14-2007, 04:47 PM   #2
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surf22 HB User
Re: Worried about my daughter

has she been to a neurologist or had someone taken a look at her spine?

 
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Old 02-14-2007, 06:40 PM   #3
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Fabrashamx HB User
Re: Worried about my daughter

I agree with Surf, she should be seen by a neurologist asap. It could be so many things, but that is where I would start, It sounds like most of her symptoms are neuro based. Good luck to you both and please let us know how shes doing.
~Fabby

 
Old 02-14-2007, 06:44 PM   #4
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catsblueeyes1 HB User
Re: Worried about my daughter

I would suggest that she see a nuerologist and a Rhuematologist, she could have a form of RA If all else fails I would think about taking her to a teaching
hospital, they seem to see patients with symptoms that are not the cookie cutter variety. keep us posted on how things turn out. I myself have severe pain due to RA along with DDD and stenosis. You know your child and she certainly has pain or else she would not be complaining. It is so irratating to me that if a Doc doesn't have an explaination it is depression. Well extreme pain can cause depression but most times the pain comes first! I will say a prayer for the 2 of you.
Hugs,
Debbie

 
Old 02-14-2007, 06:59 PM   #5
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kkmom HB User
Re: Worried about my daughter

I agree with the others that you daughter needs to see a rheumatoligist or neuro md. Do not let them tell you it is depression, she has too many symptoms for them not to do everything necessary to find out what is wrong with her. I hope you find the answers you need for your daughter. I could not imagine how fustrating this may be for you. Please keep us posted when you get time. Take care and I am praying for your daughter
Rachel

 
Old 02-15-2007, 05:00 AM   #6
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feelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB User
Re: Worried about my daughter

so sorry for what you are going thru with your daughter.i do know what its like to have to watch your child suffer,its probably one of the worst things for any parent to have to endure,espescially when you cannot do anything really to help them.i am just wondering what she actually had the MRI done on,her entire spine,brain?i am thinking since she has this only on one side of her body,the culprit is most likely neuro related.this could be stemming from her brain or spine or actual cord.do you have her MRI report with you,in your possession?if not,you really do need to keep track of all her medical records as well as any testing results of any kind.having your own set of her records just comes in sooo very handy for many reasons,trust me on that one.i got an expanding folder for all of my sons stuff and when my SCI occured i started doing the same for me.and that folder should go to every single appt you have for her,just in case some report or other document that was supposed to be faxed over ahead of a particular visit somehow never made it,you can pull out your own copy and have them make a copy from that.i have had that happen way too many times to count.just never give up your own documents,just let them make a copy of yours.

just having access to her entire medical file and reading thru the docs clinic notes and her testing results really helps for you to understand much more clearly just what one particular doc feels or his overall impression of her condition.also having all those records in one actual file,in the event that she may need to be taken to the ER for some reason,all you have to do is grab that file and go,and the docs there will have all of her vital info,believe me,this can save tons of time when time may be of the essence.this also gives the docs a 'baseline" to work form,you know whati mean?its a good comparative study and can tell them of something has gotten worse or better over time since that last test was performed and that puts you way ahead of the game.i wouldn't have suggested this to you if i didn't have this same experience with needing records for many reasons,it really does help alot.

what do her docs actually know so far or have actually ruled out at this point?what types of docs has she seen so far?you really do need to see for yourself,if you havent already done so,her MRI and what it states in there.unfortunetly,most specialists will only reveal what they "feel' is pertinent to her directly for some specific thing and not always evreything that "could' possibly be an issue.unfortunetly,what type of care you get from any type of doc is totally dependant on how much actual experience and overall nowledge that doc has in a specific area or with certain types of conditions.some just know more or will know less just based on how often they actually deal with a certain issue.sad but true.not all specialists,even the same type,have the same level of knowledge.

do you happen to live near,even a couple hours away from any sort of university teaching type hospital?honestly,i was only able to get the real info on my cavernoma that was inside my spinal cord when i finally was able to get in to see the head of neurosurgery at our local teaching hospital.i had seen two other neurosurgeons before this one who gave me way different views on what they considered all the 'facts" on cavernomas.the third opinon was basically a "tie breaker" type of opinion for me.but he also was the only one who had like over thirty years of experience in like every imaginable type of neuo and brain condition.unfortunetly he up and retired on me last aug,so now i have to start all over again with a brand new one,that just bums me out since i had been with a NS who really knew what he was talking about and the one who ended up performing my spinal cord sugery.but i knew without a doubt that i was in the very best of hands.experience just makes for a much better more knwledgable type of doc,thats all.

just what are your daughters exact symptoms and how did these start to actually present themselves?was it a slow gradula onset or a sudden one?i do wish you tons of luck with your daughter and hope they can at the very least,find out what is actually triggering her pain.is she currently being treated for her pain at all,and if so,with what?marcia
__________________
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 02-15-2007, 12:08 PM   #7
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buckaroo53 HB User
Re: Worried about my daughter

First of all i want to thank you all for all of the suggestions. Now to answer your questions. I have taken her to 3 peds drs and 1 nuero dr (which by the way i drove 10 hours so she could see him) He did what i call field tests, no MRI, no CAT scan, no blood work nothing. So i took her to the university of utah hospital (which is 5 hours from our home,now don't get me wrong i would drive her to the end of the world if it would make her better) that is where she saw the peds drs. One did order an MRI of her brain, which after 3 days of trying to get ahold of the dr, i found out that the MRI "was ok". the last doc that i took her to, i asked them to do a CAT scan, Nope that didn't happen.However, she did say that although this isn't an emergecy, it is urgent that she see the nuero dr. i said i tried to get her an appointment, but we would have to wait until April 11 isn't that a bunch of bull!! So anyway, the peds dr she saw did talk with the nuero dr and they was able to get her in March 7, which is sooner, but not soon enough for me! As for the tests there was some blood work done, and like i mentioned the MRI. that is it. And to feelbad, i didn't know i could get all of her records, everybody at the clinic acts like it is so confidental, i didn't even ask. Thanks, again for the suggestions, we are open to any ideas at this point. And thanks for the prayers. I will keep you all posted. Sincerely, Juanita PS what is a rheumatoligist and where would i find this dr and what do they check for?

 
Old 02-15-2007, 12:59 PM   #8
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catsblueeyes1 HB User
Re: Worried about my daughter

Hi,
This is Debbie, (Catsblueeyes) A Rheumatologist is a Doc that will diagnosis
all types of Arthritis, Lupus, actually any immune type illness. The other issue is please be really aggresive with these Doc's not rude but assertive. As patients we tend to be alittle intimadated by the medical profession, I know I was for a long time until I realized that this was my body and I needed to be
more of an advocate for myself. It may take a few Different Doc's to go to until you find ther right one. I would really have her see a Rheum. then if it is still not the right one then I would certainly find a better teaching facility to bring her to. Is there a Childrens hospital in your state? if not then look for one outside your state. I wish you and your daughter the best and a speedy
resolution to this problem. God Bless you both!
Debbie

 
Old 02-20-2007, 09:11 AM   #9
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buckaroo53 HB User
Re: Worried about my daughter

Thank you, catsblueeyes1. I did call and make her an appointment with the doc. It is also scheduled for March 8th. Will keep you posted. And thanks for all the prayers. Sincerely, Juanita

 
Old 02-20-2007, 10:29 AM   #10
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mzpain HB User
Re: Worried about my daughter

Hi fellow mom, I sure know how ya feel being ticked off at the docs and being disappointed when ya think your finally going to get somewhere and even a moron can tell they arent testing in the right places.

Feelbad had very important advice earlier in the thread, about getting medical records. While you have to wait for that March doc appointment, start your own personal medical record for your daughter, believe me if ya have to wait it will help to be busy with something productive towards your daughters medical care and the wait wont seem as long.
1. Start with making a list of EVERY SINGLE Doc, with all their pertinent info, like address, phone number and think real hard and write down any test they did, if the test was at a different place list that to and the doc that did it. Dont worry about writting down results at this time you are simply getting organized.
2. From this list find out (and write down) how to go about getting her records either mailed to you or if close it is better to go pick them up. Tell them it is for your daughter to have a complete medical record handy and find out if there is any fees, sometimes there are small ones, be willing to send them a check if necessary this is important.
3. Get copies of all test results and a copy of ANY ACTUAL films (like MRI) and the reports that go along with the films. They can make copies of your films but if they complain, and try and keep them remember if you or your insurance paid for them they BELONG to you.
4. Get a printout from all pharmacies if she has had to take any meds too.

This will take great organization, maybe a little money, some of your own legwork but worth its weight in gold, please find the strength to do this NOW, you will need it for any future doc appointments and if your daughter's pain is such a mystery illness, just the begining. You will feel sooo much better after you get this work done and then in the future just keep up on it and it wont be such a chore.

I hope you check back on the board so you see this soon. I have got to go to my own doc appointment but I am in Oregon and we have a great childrens hospital Doernbecker and it is right next to a famous teaching hospital Oregon Health Sciences University. When I get back home I will check out what I can to see if they have any programs where they may bring your daughter (with you) to them, I may be wishful thinking but I could swear I have heard of such programs that help parents with ill children. I will let you know whatever I find out. Take Care and I'll pray for God's help, He never lets me down.
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Mzpain

 
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