15 y/o daughter with bad MRI results - Knee & Hip Problems Message Board

heather38562 · 04-11-2009, 03:04 PM

Hey all first of all Id like to thank each and everyone of you that takes the time to read this post. IF ANYONE AS ANY INPUT PLEASE TELL ME IM A VERY WORRIED PARENT AT THE TIME.

Ok her problems began after playing ball since the age of 6-12. We began going to the sports medicine clinic (with no testing other than xrays) then onto physical therapy for 3 months and to no avail didnt work. Finally at the age of 13 she quit playing ball thereafter if would only flair up from time to time. Swelling around her knee, popping in and out of place, unbearable pain most of the time and when she became a freshman in 08' it sorta started easing up. The pain was still there but was bareable. OK then 2 weeks ago her right leg swelled so bad and then it turned blook red down to her ankle and was feverish to the touch and on both side of her ankles was twice the size they should be from the swelling so therefore I took her to the ER to no avail they pretty much said oh its juss problems your tendonitus acting up go up wear ur brace and in a day or two it should be better. Then another doctor came in and said Im not sure about what the Nurse Pract. said so he suggested we go to her pediatrician the next day for an order of an MRI. Ok then they called the house yesterday (Friday 10th) and told my husband that they needed me to call them asap. I therefore got home and called and the nurse basically said that her Dr. didnt wanna discuss this over the phone and that we needed to be there first thing Monday morning to talk to him. Naturally I panicked and called back and finally got to talk to his nurse practionar which we also see alot on normal visits she then said Heather I kno your worried so heres a lil bit of wats going on....she has some major swelling inside and around her bone marrow in her right knee and down her leg. She said this is usually not common in teens and we first gotta find out the underlining problem and go from there.

So now thats pretty much all I kno until Monday morning so does anyone out there have any ideas of what Im up against. It juss worries me when they said that the bone marrow was the major problem and that scared me to death.

PLEASE if anyone has any ideas of what this could be and wat we have ahead of us to deal with please help

she also noted on the fone yesterday that if any redness or more swelling shown up to bring her to the ER asap.

Thanks for anyone input

Worried mom

jennybyc · 04-11-2009, 07:06 PM

Okay mom, you need to calm down and be strong for your daughter. I know that panicy feeling...my 7 year old got a life threatening disease and I had to tough it out for her sake so I've been there.

Your daughter could have anything from a bone infection from an undiagnosed stress fracture to the bad stuff we all fear. It actually sounds more like a bone infection than something like a cancer. But whatever it is, you need to hold it together for her sake until Monday. Chances are she'll need lots more tests including a bone marrow biopsy. I had to hand over my 7 year old for one and it scared me to death. She slept through the whole thing and felt nothing. Just take it day by day.

I'll do some reading tonight and see if I can find anything of use but chances are you'll have to wait. By the way, my very ill 7 year old is now 33 and named Heather.....and healthy. Hang in there and I'll check back in tomorrow to see if you need a hand to hold.

gentle hugs...........Jenny

jennybyc · 04-12-2009, 06:18 PM

Heather...how are you doing??? How is your daughter doing?? Please let us know how she is and what turns out to be wrong. I'll be here to hold your virtual hand if you need it. As I said...been there with my Heather.

gentle hugs............Jenny

heather38562 · 04-13-2009, 05:55 PM

Ok guys..

We went to the doctor this morning and all the extra info I found out was that the bone marrow is involved completely in the femur bone including the knee. Then she really avoided any questions we had and I can understand that partially because A.) she's not the specialist B.) she probably knows it could be from a number of things etc etc

So now we are scheduled to be seen at Vanderbilt Childrens Hospital in Nashville, Tn. Which is about a 2 hour drive from my town. This is a very well known hospital and is rated one of the best around.

So now pretty much if anyone still has any IDEAS of what this problem could be or what just please let me know.. (=

Thanks,
Heather

jennybyc · 04-13-2009, 06:13 PM

Heather....I'm glad she's going to Vandy. Knew a great doc there and his daughter married my brother.

I did a lot of reading over the weekend and was really surprised just how many disorders of the bones hit kids from age 10 to 20. Everything from cysts in the marrow to end plate problems. A lot are from repeated trauma, and even more are genetic. It's during this phase of life that the bone marrow is beginning to be replaced by fat so a lot is going on during the teens. Yes, I did look up cancers but nothing seemed to match any of her symptoms. It seemed more like a disorder of the bone marrow and those are benign and treatable. In fact, the vast majority of problems I read about were benign and treatable.

So hang in there. You are taking to a very good hospital and that's a good start. Expect lots of testing. It will hurt you more than your daughter. It's okay to let her know you are scared and it's okay to cry with her. Honest emotions are always appropriate. What you have to guard against is getting yourself scared before you have any answers. That will scare her too. And she needs support, not weakness from you.

I'll be here (hopefully....I'm also awaiting word on 2 major surgeries)and I know others will be along to help support you. Guessing at what might be wrong is not helpful at this time since the possibilities are too numerous but holding your hand...virtually...as you go through this is what we can do best.

Major gentle hugs.................Jenny