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Author Topic: 5 yr old daughter w/chronic knee pain... do not know the cause. Need answers!  (Read 9105 times)

Offline ang7880

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Hello all.  I have a 5 yr old daughter who, for the past year to year and a half, has had chronic knee pain.  It is particularly in the back of the knee and we seem to notice more pain at night.  About a year ago her pediatrician ran a list of tests, bloodwork...etc and no answers were found.  Everything came up normal.  According to them the "life-threatening ailments" are ruled out...but I still have a little girl who wakes up once or twice a week with horrible pain in her knees.  Our worst incident was tonight.  For the first time, I wrapped my hand around her knees and felt them spasming.  It's not just a dull pain...she basically woke up screaming and the only thing I could do was give her pain meds and wrap a warm cloth around her knee....I feel so helpless.  She shows no signs of swelling that I or anyone else has been able to notice.  The pain is definitely in her knees and she always says in the back.  There's no pain in the long bones of her legs...so we've decided this can't be growing pains.   I am just looking for answers to what might be causing her pain.   Please help...the doctors have gotten to the point where they just tell me to watch her over time to see if it gets worse....I feel like I'm wasting my time when I take her.  They don't have the answer we need.

Angela

Offline UK Girl !

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Hi Angela

oh your poor babe - it must be so hard to watch her in pain.  You have to go back to your doc and get to see another pediatircian and maybe an OS - and get everything looked at again. I may even be worth seeing a physio to see if they can come up with any exercises to help - has she had growth spurts - it maybe that the bones are all okay but the muscles may not have kept up with the speed of growth and need stretching out (My son - although a lot older when he had probs - but we had over a year of this sort of prob and it turned out it was shortening of his hamstrings - which we would never have guessed as he was so into sport and very fit - a sports physio solved it in about a month after doctors couldn't find anything)

Reall hop you get something sorted soon,
anja
1978 - ruptured acl and all cartalidge removed.
several debridements over years
TKR 10TH JULY 2006 http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=28257.0  Aug 07 patellar maltracking - more physio! Still pain - but so much better !
BIOMET AGC  TKR  (with 10 yr warranty !)

Offline Linds

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Agreed, you've gotta go after answers, for you daughter.   The doctor is right and they've ruled out all the nasty, but that doesn't make the pain any easier for your child.  My mother should be a warning to everyone.. lol.. when I was young, even before my knees really started to bother me, she took me to the doctor constantly and told him my legs didn't look right.. he constantly told her it was fine and that I was just growing... :P Well.. she feels sick sometimes now knowing that my legs really were as funky as she thought they were... But it wasn't for want of her trying.. she did try. there is someone out there who will figure out what's wrong with your daughter, it isn't fair for her, or you to have to deal with this.
Maybe you should try some alternatives, a chiropractor, a physiotherapist... a massage therapist.. just to get some other.. differrent opinions.

Goodluck
Hope you find some answers..

Linds
1997 Scope RK
2002 LR RK
2002 Scope and hematoma evac RK
2004 LR LK
May 06 Fall from Horse, partial ACL tear and meniscus injury, Tibial plateau injury
2007 Scope, Plica Excision and Debride LK
2009/2010- Possibly Ankylosing Spondylitis?

Offline luckygrandma

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Hello all.  I have a 5 yr old daughter who, for the past year to year and a half, has had chronic knee pain.  It is particularly in the back of the knee and we seem to notice more pain at night.  About a year ago her pediatrician ran a list of tests, bloodwork...etc and no answers were found.  Everything came up normal.  According to them the "life-threatening ailments" are ruled out...but I still have a little girl who wakes up once or twice a week with horrible pain in her knees.  Our worst incident was tonight.  For the first time, I wrapped my hand around her knees and felt them spasming.  It's not just a dull pain...she basically woke up screaming and the only thing I could do was give her pain meds and wrap a warm cloth around her knee....I feel so helpless.  She shows no signs of swelling that I or anyone else has been able to notice.  The pain is definitely in her knees and she always says in the back.  There's no pain in the long bones of her legs...so we've decided this can't be growing pains.   I am just looking for answers to what might be causing her pain.   Please help...the doctors have gotten to the point where they just tell me to watch her over time to see if it gets worse....I feel like I'm wasting my time when I take her.  They don't have the answer we need.

Angela
Forget about taking her to a Pediatrician, what she needs is a good Orthopedic Doctor. There is definately something wrong and if she were my daughter I wouldn't give up until I got the answers. Many things can be causing this problem. Have her hips been checked out. I had one daughter born with a congenital hip that wasn't diagnosed until she was 16 months and I had Legg Perthes Disease all the years I was growing up and complained about my knees all the time. The whole time it wasn't my knee that was the problem but my hip and it wasn't until I was 45 that this was diagnosed. The doctors just said I was having growing pains. There is no excuse for this today as so much more is known about these problems then when I was a child. What I'm trying to say is that it may not be here knees at all but the pain could be coming from a different source. Also have her back checked out. [/color]

knee deep in Goo

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When I was born my hip was out of socket. I spent the first year of my life with a pillow strapped while sleeping.  Around age 6- 15 My knees  would hurt. I was told " I had growing pains".
 Extra strenth ben gay and heating pads had been common.

What I can suggest is make sure she has a sport like swimming or biking and make sure she keeps her weight down.  If the doctors can not find a reason now.  Keeping her legs strong and her body frame lean will help her.  As for the pain.   I know its is unpleasant to deal with ..  There is biofeedback that might help her learn to relax when the pain is intense.

Did the Doctors take xrays?

Offline hustlegritdrive

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oh my goodness that is awful. i would deffinately take her to get some more opinions. maybe to an orthopedic surgeon who specializes in pediatrics & or a pediatric rheumatologist (they normally dont just do rheumatoid arthritis they work with many other problems. even thought they've done the bloodwork. there are sometimes false negatives. not saying there is one. but it never hurts to try & take her to other doctors. i sure hope your poor girl gets better & soon!!
i wish you the best of luck & prayers
hustlegritdrive
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Offline luckygrandma

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I don't think there is anything false about this. A 5 year old doesn't make up that kind of pain, but I like  the juvenile arthritis thing as that is very possible that she is having this and it doesn't show up in an x-ray yet. There are many avenues you can explore and I would try all of them until you get the answers you want.  I suffered with pain all the years I was growing up becasue no one took me seriously. They even removed a wart from my knee and tried to convince me that was the problem. Finally I suffered in silence until I became an adult and was able to find the answers for myself. As a result of my problems not being taken care of as a child I suffer much more as an adult and one thing is just leading to another. The sooner you can diagnose the problem and get proper treatment could make a difference in the quality of her life for the rest of her life.I might add also that pain can cause disapline problems that are no fault of the child. As adults we all know that pain can make you miserable. I grew up being made to feel I was a terrible child when indeed there was a reason and I was crying out for help. :'(

Offline ang7880

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Hello everyone. Thank you for all of the replies...it's encouraging.  I'm keeping my little Grace home today and we plan on going to the doctor.  Maybe he can give me a referral to an orthopedic.  I've never seen her as much in pain as she has been over this weekend...that's what's prompting me to get her in quick.  I suffered knee pain growing up as well....and still do...but not like the pain she's having.  My doctor's told me it was because of fluid retention around my knees...made me quit gymnastics as a kid...etc. 

In response to some of the comments...she has not had any growth spurts.  She's grown only about 2 inches since August last year.  She's a very petite little girl, short and thin.  I'm not sure if the two can be related...her small size and her knee pain. 

And, No, we haven't done xrays yet....that is something I want done asap.

Offline stgiles16

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I must say, I am SHOCKED that her doctor has not even done basic x-rays. That should have been done during her first or second visit complaining of knee pain. Maybe you need to find the poor baby a new GP, this one sounds like he doesnt believe either you or your child about the knee pain (if he has not even done basics like x-rays). Dont give up until you find some kind of help for your child. Good for you, taking her back today. I wish you tons of luck. Please keep us posted on what you find out.

missy
2 ligament recons right ankle
2 arthroscopic,
5 open knee procedures
2 Plica removals
bone spur removal
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4 debridements
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Arthritis,both knees, ankles, shoulders, elbows, hands,spine
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RA
in pain mgmt
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Offline luckygrandma

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My heart just goes out to you and this child and it makes me feel like crying. There is an answer for you if you have to keep switching doctors until you find it. We all know there are good and bad doctors and they don't know everything.  Don't let them tell you that nothing is wrong and don't accept an answer you are not satisfied with. She is your child and you know her better then everyone.  Pain is a warning sign that something is wrong and I don't believe this child is just making it up for attention.

I too can not believe that there have been no x-rays. I just assumed there was when the doctor told you he couldn't find anything.  How can he not find anything if he hasn't tried.

Offline luckygrandma

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I just reread your original post about the pain being in the back of her knee and affecting her back. If the x-ray doesn't show the problem insist on an MRI. Xrays will not show everything like torn ligamnets, cartilege (sp) or torn tendons. I had a TKR 9 months ago but I still have  alot of pain in the back of my leg and back. The doctors believe that the pain in my knee is caused from my back as I have spinal stenosis, arthritis and a slipped disk. Back surgery is scheduled for January. Who would have thought after three knee surgeries in one year that it boils down to my back.

redtoblack

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This must be really hard on you.  To have a child in pain and not have any idea what is causing it.  I would insist that the Dr's do X-rays and an MRI.  Don't stop until you find out why your child is hurting.

Best of luck to you.

Jordan

Offline ang7880

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Hello again.  We just got back from the doc.  Our ped was out of the clinic today so we saw someone new.  I did mention that I wanted xrays done and also wanted to be referred to an orthopedic specialist.  No xrays were done.  And in fact, she said, "I'm not sure what it will help [to take her to an OS], but if you want to do that...we'll get you a referral."  They are phoning in a referral and will call me sometime today.

Last August Grace had bloodwork done...mainly for rhematoid arthritis...which was negative.  We've had no injuries, no growth spurts....  she has no pain in her long bones.... only complains of pain behind her knee. 
We usually see an AVP [adv practice nurse] and have enjoyed seeing him... but have to admit.... whenever he knee pain comes up he always askes if I give her any special attention when she complains of her knee...   Well, NO, no special attention...but of course I'm going to soothe her and make sure she feels better.  My children do not lack attention.  Hopefully the OS will go well and we'll finally get to the bottom of this.

Oh, luckygrandma... the pain is in the back of her knees, but not in her back.  I'm glad you've finally figured out it's your back... hope all goes well in January.  =)

Thank you all for your support.  I will not give up.
« Last Edit: October 09, 2006, 05:02:34 PM by ang7880 »

Offline hustlegritdrive

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oh i sure hope you can get in soon with the OS!!  ;) 

the MRI is a good idea, but make sure she gets a closed MRI because an open one, due to her being so small, will most likely be unclear.

oh i just reread my post & im sorry it sounds like i said she may have false pain, . i meant the bloodwork could say she doesnt have something but she could actually have it. sorry about the unclearness of my sloppy typing.  :)

this sure must be frusterating to you & your family. just keep seeing as much doctors of whatever specialty you need until you get to the bottom of this. your daughter is lucky to  have such a determined & caring mom!!

sending encouraging thoughts & prayers your way

hustlegritdrive
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Offline ang7880

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Should I send her to an Orthopedic Specialist or a Rheumatologist?  I'm unclear...my instincts tell me it's arthritis...but she's already been tested for jra and it was negative.   ???

 















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