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Author Topic: 5 yr old daughter w/chronic knee pain... do not know the cause. Need answers!  (Read 14384 times)

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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]

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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
2 open LOAs all on left knee
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.   ???

Offline luckygrandma

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I would take her to an Orthopedic Specialist. They will be able to determine if it is arthritis and refer you to someone if need be. 

It wasn't determined my back was the problem until I had trouble with my other knee a few years ago. I had many things wrong. I did have arthritis in my knee and torn meniscus, but when I was a child and  complained of pain all the years I was growing up it turned out to be Legg Perthes Disease in my hip on the side I was having the pain.I was told I had this since I was three years old.  Leg pain is a symptom of Legg Perthes but years ago they were not looking for this like they are now. I had a Total Hip Replacement when I was 45 and for the first time since I was a child the leg pain stopped. 

Because the problem was not taken care of when I was a child, I screwed up many other parts of my body by walking to compensate for the pain. I was in the Navy and went through basic training with this problem and raised 4 children. Like I said I suffered in silence for years until the pain got so bad when I was older that I could barely walk and my GP had x-rays taken and sent me to an Orthopedic Doctor who said in all his years of practice it's the worse hip he had ever seen. 

Through my experience I've learned that what seems obvious may not be. I also don't like the  attitude that the Doctor you just went to had. Somehow I knew they would ask you if she does it to get attention. I could ring their neck because I went through that. It's exactly what they told my parents but the difference is my parents believed it and told me it was in my head.  I should know whether it was in my head or my leg. Give me a break.
:-\
« Last Edit: October 09, 2006, 09:33:10 PM by luckygrandma »

Offline hustlegritdrive

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well in my opinion id take her to both of them. it is possible to have both orthopedic issues & ones that a rheumatologist could help you guys with. i personally have had a false negative for my JRA/RA tests. so you cant cross that off even though she had a negative result. although it would be great if you could. are any of her other joints bothering her at all??

i agree with what luckygrandma said about their attitude!! that is very annoying how children in pain all too often dont get taken seriously.

& luckygrandma that is so great that your hip replacement worked with helping the pain!! although that really stinks about your other body parts being messed up, i hope things get fixed for you & i wish you the best of luck in january!!

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Offline luckygrandma

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Thanks hustle, It only took 45 years for the problem to surface so bad that they couldn't deny there was a problem. I was adopted when I was 9 years old and was very malnurished those first 9 years. Although my adopted parents fed me very well and took me to a pediatrician every 6 months, he always said I was in good health and that the pains were just growing pains. Even at nine I would get so frustrated. What happens in the first few years of a child's life can set the pattern for the rest of their life.

I just don't want to happen to any child what happened to me. As a result I was very angry when I was diagnosed with something at 45 that I had since I was 3 years old. I was angry with doctors, my birth parents and even took it out on my adopted parents because I felt they too did not listen to me. All I knew is I had this anger bottled up when I learned I needed a hip replacement that if taken care of as a child could have been prevented. Although I'm not sure if a THR was heard of 45 years ago. I'm 59 now and am now recooperating from a TKR that I had 9 months ago. I had three surgeries within a year on the same knee until they got it right. I switched doctors because after 14 years, once again my OS was not listening to me. A PKR should never have been performed due to the kind of pain I was having, but he did it his way anyway, completely disregarding what I was telling him. I also complained to this same OS that my hip was still slipping out after 14 years if I bent past 90 degrees. He told me it was just my bone structure. The new OS said the wrong size ball was put in and they would replace it with a larger one when my hip needed redone. It is starting to show wear and so that too is in the near future. I guess the moral of this story is that even if you go to an OS if you are not satisfied with his diagnoses see another and another one until you are.

The reason I told ang to start with an OS is because they can do X-RAYS and an MRI and if the child does have arthritis they willl refer someone. My OS refered me to a spine specialit for my back and a pain specialist. Many times you have to go to a OS first to get the referral, it depends on your insurance. You can even ask them to refer you. She said she had tests done and was already cleared of arthritis so I was just afraid she would be discouraged again if she went to this Doctor and was told the same thing, althiugh many times it's good to have more then one doctor involved in your care. I now have a GP, OS, PS, SP etc all know of my problems and are working together. Make sure everything is sent to the Pediatrician from these doctors as well so he is informed of the problem, tests etc.

I just thought of something else. With my hip and not getting anywhere with the OS I decided to go to a Chiroprractor who x-rayed my hip. I complained of my back and he x-rayed my hip. He was actually the one to diagnosed me.  The problem is that chiropractors don't believe in pain meds and every time he worked on me the pain was worse and so I decided to go to my GP and get pain meds. He asked me to bring my x-rays from the Chiropractor. One look at them and he said I'm sending you to an OS so you can learn what you are dealing with and that's all he said about it. That's where is all began 45 years after the fact.
  :-[
« Last Edit: October 10, 2006, 01:43:33 PM by luckygrandma »

Offline ang7880

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Hello luckygrandma and hustle.

I got a call from our Pediatric Clinic today for the referral info.  Instead of sending us straight to the OS, we're going to the Children's Hosp's radiology dept for an AP Frog Pelvis xray.  Then, I'm guessing, they'll send us one to whomever we need to see.  I did ask for the referral to a Rhuematologist as well, but they wanted to start with the OS and move on from there.  It's so very frustrating the way insurance works... thank God for it otherwise I couldn't afford it all, but there are so many steps to go through in order to get to where you need to be.  Arggh.

Thank you all for your help and guidance... I will post updates as soon as we know something new.  So far the 150mg of Ibuprofen before bedtime seems to work well for the night.  She doesn't wake up in pain and gets a restful sleep.
God Bless.

Ang

Offline hustlegritdrive

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Luckygrandma--you deffinately have a great point well several of them. thats crazy that you had to go through all of that though. im glad your getting things better now though!! i hope your having a good week!!  :)

Ang--im so glad to hear that the ibuprophen before bed is helping her!! oh i didn't even think of insurance issues, i guess we got lucky with the kind we have because we dont need referals or anything.  ::)  :P but like you said, thank god for it!!  ;)  doctors are so expensive, especially the specialists!! anyways, its awesome to hear that things are moving along for you guys!!  :D
. have a great week as well & good luck with the x-rays!!

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Offline Pansy

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Hi...My son is 8 years old and was just recently diagnosed with Perthes Disease...He had chronic knee pain for years...Knee problems run in my family so I just figured it had to be his knee...His pediatrician kept brushing it off as growing pains...Well about a year later he started limping really bad and has very poor ROM...So I bypassed his pediatrician and made an appointment with an Orthopedic Surgeon...Well the OS takes xrays of his knee and says everything looks A-OK but that sometimes hip problems cause knee pain...So he takes xrays of his hip...And bingo...His hip is the culprit...Part of his bone is just gone...Because of this childhood disease it cuts off blood supply to the bone so the bone dies...This disease affects young children...Between the ages of 3-9 but sometimes up until they are 15? You can look up about it by googling Perthes Disease...The real name of it is super long but that is what it is known as and you should be able to find information on it...Good luck...Hope everything turns out ok for her...
Pansy
26 y/o
7/2004-L Knee LR,Plica Removed,Scar Tissue Removed,Crack in Kneecap,Shallow Femoral Groove,Deep Fissuring and Fraying of Kneecap
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Offline ang7880

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Pansy,
Thank you so much for that info.  It's good to know what to look for.  That seems like a possibility for us...based on my readings of Perthe's...but there are a long list of possibilities.  That's what makes a dx so hard....and I'm so anxious to get these xrays.  I can't believe they didn't do this a year ago! 

Offline luckygrandma

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Hi...My son is 8 years old and was just recently diagnosed with Perthes Disease...He had chronic knee pain for years...Knee problems run in my family so I just figured it had to be his knee...His pediatrician kept brushing it off as growing pains...Well about a year later he started limping really bad and has very poor ROM...So I bypassed his pediatrician and made an appointment with an Orthopedic Surgeon...Well the OS takes xrays of his knee and says everything looks A-OK but that sometimes hip problems cause knee pain...So he takes xrays of his hip...And bingo...His hip is the culprit...Part of his bone is just gone...Because of this childhood disease it cuts off blood supply to the bone so the bone dies...This disease affects young children...Between the ages of 3-9 but sometimes up until they are 15? You can look up about it by googling Perthes Disease...The real name of it is super long but that is what it is known as and you should be able to find information on it...Good luck...Hope everything turns out ok for her.
Pasny, what treatment was recommended for your son at this age. Mine was brushed off all the years I was growing up until as an adult I had to have a THR. I was told that if the disease is diagnosed early that I would never have been allowed to walk on it until the bone formed hopefully right.  Legg Perthes is where the ball joint doesn't form right and is usually egg shapped instead of round. Because of this the socket got worn out over the years until I was bone on bone and totally wore out my hip. After all, I went through my most active years with that hip, ballet, tap dancing, school sports and gym, riding bike, basic training in the Navy, raised 4 children and was even a Day Care Mother, etc, etc, etc, You get the picture.  Maybe I did as well as I did because I was active. The problem I complained about as a child, was my knee aching so bad that I couldn't get it comfortable to sleep. I mostly nosticed it at night. Basically I just lived with it until it got so bad I couldn't walk. If it wasn't for the THR I would be in a wheel chair today. Thank God there was at least that option 14 years ago. My parents did take me to the doctors, but only the Pediatrician and GP, and no x-rays were ever taken. I was never sent to an OS and they just kept telling my parents that I was fine and it was all in my head.  I was adopted at age 9 and had emotional problems. and I think they just felt I was trying to get attention. Please let us know how your little boy makes out. This is an interesting subject for me as I've lived with it my whole life and I'm 59 now.

I had a daughter born with a congenital hip and thank God for the new techiniques as you would never know it today and she is 36. The surgery they did on her had only been in existance for 10 years, and never used on a child her age. Her hip was not Dx until she was 16 months and we took her to a Pediatrician regularly. It was actually our GP that diagnosed her. She was put in traction in the hospital for 3 weeks in a straight jacket at 16 months. I was not allowed to pick her up and hold her during this time. I cried myself to sleep night after night with my baby in the hopsital. One week after she was put in the hopsital I had another baby.We were in different hospitals miles appart. I was told even if we had been in the same hospital I would not have been allowed to see her as the maternity ward is considered the cleanest ward and the Pediatrics the dirtiest.  She was then put in a body cast for 10 months and when the cast came off she was in an abduction splint for a year (This is where her legs were in a frog legged position.) She walked in this position until she was almost 4 years old and then ended up having surgery anyway as the socket was not growing fast enough. After the surgery she was in another cast for 2 months and then was able to walk, but it took her awhile to straighten her legs after being in that position for almost 2 years. She was not potty trained when this began and had to have her cast changed every other month because it got wet. Have you ever tried to potty train a child in a body cast. She even walked in this cast in a frog like postion and kept breaking the cast. If this had been dx at birth the doctor would have yanked her leg down and put her in a splint for two months and she would have been fine. In case anyone doesn't know what a CONGENITAL HIP is (it's where one leg is shorter then another) The ball joint is not in the socket and as the child grows the socket forms where ever it is. One thing I learned is a child is not born with hip sockets, they don't strart Developing these until about 5 years old. The same with the arm sockets. That is why it is very impiortant to not swing your child like an airplane by the arms when they are little. In the early days they used to treat this by making the sole of the shoe thick on the leg that was shorter.

I personally don't trust Doctors as I've been misdiagnosed too many times, and I'm no longer afraid to ask questions or tell them they are wrong. I feel I know my body and pain is a warning sign, and as long as there is pain things are not right. After all we were not born with pain.[/color] :)
« Last Edit: October 11, 2006, 12:40:10 PM by luckygrandma »

Offline Pansy

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Ang...No problem...I know how frustrating it is to see your child suffer and to have them brushed off...I have it good because in the state I live in (Ohio) the government offers medical to 90% of children...Income requirements are very high and even with both of us working both of our children still qualify for it...Cost-free medical...Don't know what I would do without it...Maybe you can look into something like that in your state?

Luckygrandma...Right now they are just hoping they caught it in time so that he does not require surgery...Our first step is physical therapy 2x's a week to try to coerce the ball back into the socket so that when it does start to heal itself it is in the right place...Next month will be his 3rd month in therapy and he will go back to see his OS...If the therapy isn't working out then they will put him in a cast or brace...I think its a cast...I have no idea how long he will have to be in it...If he needs it...And thirdly if that doesn't work then they will do surgery to pin it in place...
 
Pansy
26 y/o
7/2004-L Knee LR,Plica Removed,Scar Tissue Removed,Crack in Kneecap,Shallow Femoral Groove,Deep Fissuring and Fraying of Kneecap
7/2006-Fulkerson-Maquet TTT,Partial medial and lateral meniscectomy,Tibial osteotomy proximal bone graft,Chondroplasty,Debridement
2/2007- Hardware Removal

Offline luckygrandma

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Luckygrandma...Right now they are just hoping they caught it in time so that he does not require surgery...Our first step is physical therapy 2x's a week to try to coerce the ball back into the socket so that when it does start to heal itself it is in the right place...Next month will be his 3rd month in therapy and he will go back to see his OS...If the therapy isn't working out then they will put him in a cast or brace...I think its a cast...I have no idea how long he will have to be in it...If he needs it...And thirdly if that doesn't work then they will do surgery to pin it in place...
 
Pansy
Pansy, I am a bit confused because with my Legg Perthes the ball was in the socket, but the ball never developed right and was
egg-shaped. With my daughters Congenital Hip the ball was out of the socket, and she had to go into traction at 16 months to pull it into place. I don't understand how therapy is going to put the ball back into the socket. If the ball is not in the right place from birth when it does start to grow then it will boar a socket wherever it is. Eight years was a long time to walk on that leg, how come it wasn't discovered sooner. My daughter had just started to walk, and when she was diagnosed the doctor said she should never have walked on the leg.What you are describing sounds more like a Congenital Hip or a little of both.
???
« Last Edit: October 11, 2006, 07:34:52 PM by luckygrandma »

Offline Nola

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Ang, if your ped. has sent you to a Children's hospital for x-rays, you are on track.  I would check to see who is their Pediatric OS's on staff and then see if you can find out who is good or better.  I don't think it would be out of line to check references if it were my daughter. Since she just had blood work done for JRA in Aug and all was neg. I would insist on going the Pediatric Ortho Surgeon.  Most Children's hospitals have at least one or two on staff, because there is lot of need for them.
Good luck and keep us posted. Nola
Nola

9/24/06 Fall while horseback riding. Ruptured 100% ACL, torn meniscus, MCL (grade I)
2/14/07 ACLr B-PT-B autograft Murcia, Spain
5/25/07 US Arthroscopic LOA, meniscectomy, chondroplasty
www.dominiobuenavista.com My winery!
www.frappr.com/kneegeeks  place where you can map where you live.

Offline ang7880

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Hi Nola.  Thank you...I'm very anxious about the xrays.  She had her bloodwork back in Aug of '05.  I think another round would be in order. 

She has a field trip with school that I'm attending with her tomorrow or else we'd get the xrays then.  I know she doesn't want to miss out on the field trip [pumpkin patch =)]... so it'll probably be Friday.  The nurse called me today and said we didn't need an appt...just walk in. 

Oh Pansy, we have really great ins through my hubby's work...it's just it takes a lot of waiting when it comes to referrals.  I'm an impatient person though...so maybe it's not as bad as I make it out to be, lol.  I'm afraid we don't qualify for any state benefits.  That'd be nice though. 

Offline hustlegritdrive

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have fun at the pumpkin patch!! i know when i was little those field trips were the best. lol.  :D

thats great that the x-rays are walk in & you dont have to wait forever to get em!!

hustlegritdrive
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Offline luckygrandma

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ang, I just googles Legg Calves Perthes Disease, and even though I've lived with it for over 40 years before it was diagnosed, I was shocked. Please make sure they x-ray her hips as her symptoms go directly with this disease and if caught now the prognosis is very good.  I just went along with what I was told and never really researched it. Your little Grace is so lucky to have a mother like you who is listening to her and taking her pain seriously. My life could have been so different if I had the same thing when I was a child.

I learned there are three stages to this disease and the first two happen within a couple years and the last stage can go on for years which is what mine did.  You also said she was small, with Legg Calves Perthes the child is usually small due to the fact that the bones are not growing right. I'm 5' and I guess I'm lucky to be that tall. Like pansy said the ball can come out of the socket also and the first nonsurgical procedure they do is therapy.  Your little girl is very lucky and she will be fine becasue she has a wonderful, caring mother.

I guess the good news is that even though it took so many years at least I learned I wasn't crazy,  ::)
« Last Edit: October 12, 2006, 11:59:27 AM by luckygrandma »

Offline ang7880

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Grace is going first thing in the morning to have the AP Frog x-ray.  We had an exciting morning.  The field trip didn't work out as expected...what was supposed to be a sunny day with temps around 70° turned into  50° temperatures and pouring with rain...with 20+ 5 year olds on a hayride.... fun, but we were freezing and soaking wet, lol.  We came home early and I stuck Grace in warm bath.  I'm usually very optimistic and I'm hoping for some input tomorrow....but I'm sure I'll just get an "Okay, we'll forward the results to your doctor and they'll get back to you."....who knows. 

luckygrandma...I was thinking the same.  I'd read a bit on Legg-Calve-Perthes Disease on google too....everything points to Grace except the limping.  I haven't really noticed her having a limp. 

Offline luckygrandma

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I never had a limp either ang and that was one of the reasons why they never saw any obvious reasons for something being wrong with me accept for me complaining of leg pain.  I too mostly just had the pain at night. My knee would get hurting so bad that I couldn't get comfortable to sleep. My daughter did have a limp with her Congenital hip. 

When I was going through this there wasn't computers like there are now where you can research things. It actually made me angry when I read about the Legg Calves Perthes Disease, because I can't believe I was going through such a terrible thing and Doctors, parents, etc didn't know. My life could have been so different if I had been diagnosed as a young child.

Your little Grace is going to be okay becasue you are on the right track. There is definately something wrong and don't let anyone try to tell you different. If they can't find anything with one test tell them you want another and another until they do find the source of the problem. 

Offline ang7880

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luckygrandma, I got your pm but for some reason I got this message when trying to reply... "You are not allowed to send personal messages. "  Anywho...I appreciate your posts and your help.  Any information is greatly appreciated and helps so much. 

Grace had her xrays this morning.  I was hoping to hear something, but of course..I only got "We'll fax the results to your doctor.".... ugh.  We did see the xrays...and at the time, not knowing what to look for [why didn't i research this more before I went?]...I just tried to stick a carbon copy in my brain and get home to compare what I remembered................. the thing is...I can't remember!  I tried asking questions "Does anything look abnormal to you?" type things to the radiology consultants...but they only said "We'll have our radiologist take a look."... they did, yet didn't tell me anything...only said our doctor would get back with us.  I'm so impatient...and with this being the weekend, I'll have to go at least til Monday [probably Tues or Wed]  before I hear anything!




Offline luckygrandma

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anj, I know how frustrating this can be and these so called professionals don't make our life any easier.  I hate the way they keep giving you the brush off and are not taking this more seriously.  I have found over the years that I practically have had to diagnose myself and tell the Doctors what I think is wrong.  It's very frustrating also when you have to wait over a weekend to find out things. I've had this happen so many times.

I had three operations on my right knee in 9 months and it's been 9 months since my TKR and I still can't walk right. I walk stiff legged and there is still a lot of pain. I am over-extending my knee also. Every time I saw the Doctor he said the knee was fine and it is my back causing the pain. He said on my last visit "I'll see you in a year" I drag my leg into his office and he'll see me in a year.
 I DON'T THINK SO!!!!!!I'm sure my back is part of the reason but what does that have to do with not being able to bend my knee.  I suggested going to hot water therapy( the doctor never suggested it). The therapist I'm going to now are baffled but are helping me to work on the problem to get to the bottom iof it.  They feel my hamstrings and muscles are not working together and that I need to strengthen them. They even suggested a brace. I'll try anything at this point. I felt if I got working with therapist again that I would get more attention from the doctor and he would recognize something is wrong. I feel like I'm still trying to convince people and professionals that something is wrong the same way I did when I was a child and they wouldn't listen to me. I'm not a child anymore and this time they will listen. This is not acceptable. I've been through too much to have it end like this.
:o

Offline hustlegritdrive

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ang--

they have recently made it so you have to make 21 posts in order to reply/send any personal messages, thats why you couldnt reply to luckygrandma's messages.  ;)  thats really great that her x-rays have been done. i was told that they aren't allowed to tell you anything that they HAVE to have the radiologist look at it before they can say anything.   ???  i dont know if thats how it works everywhere or what....maybe so.  ::) :P  but your right it is very hard waiting, esp through a weekend. i really hope they call you soon though!! oh actually, i just remembered something. lol. with one of my MRI's we actually called in the next afternoon & asked if the results were ready & they said we could come in & get a copy. so maybe you could call in on monday if your doc doesnt call you & pick up a copy. well i better get going. try & have a great weekend!!  :)

hustlegritdrive
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Offline DennisB

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Ang,

Has a Baker's Cyst been ruled out?

My daughter is 4 and she is suffering from one on the back of her Right knee, the pain she goes though is terrible.
Injured right knee April 06
Grade 2 medial ligament tear
Buckled medial meniscus
80% rupture of ACL
Arthroscopy showed the above
10th August ACLr (hamstring graff)

----------- WHAT LIES AHEAD ? ----------

redtoblack

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What did you find out about the X-ray's?

Offline luckygrandma

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I'm anxious to hear about the x-rays too.

Offline ang7880

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Hi all. 

Dennis, Baker's cysts were ruled out. 

Grace's xray results are still unknown to me.  I just got a call from someone in the office of our pediatric clinic saying that we had an appt with an OS at our Children's Hosp on Nov 1st..... 2 weeks away.  I'm not sure if something  abnormal was seen in the xrays and that's why we're getting in to see the OS or if it's just because I requested.  Orthopedics did say that they required her to have xrays before they'd see her.  More waiting.  At least we're moving along.

♥Ang

Offline luckygrandma

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That is wonderful ang. My guess is that they know what it is, but want you to see a specialist to explain it.  When my Legg Perthes was diagnosed and I took my x-rays to my GP he said he wanted to send me to an OS so I'd know what I was facing.  I already knew it was Legg Pethes from the chropractor, but my GP was relucted to give me any more information. If they are not qualified then they will send you to someone who is. You will know soon and then it can be dealt with and your little Grace will not be in pain anymore.    ;)

Offline hustlegritdrive

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aw im so happy for you ang. that is great!! like you said things are moving along. waiting is pretty hard though, but time will fly by & before you know it the apt will be here.  :)  hope your having a good day!!

hustlegritdrive
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Offline ang7880

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Re: 5 yr old daughter w/chronic knee pain... do not know the cause. Need answer
« Reply #40 on: November 03, 2006, 05:01:26 PM »
Hello everyone.  Thank you all for your support.

My little Gracie went to the OS yesterday and we were given the results of the xrays...which were basically normal.  No sign of perthes....and since she was a breech baby they also looked for deformity of the hip...which there were none.  They said what she's experiencing are growing pains...that the long bones grow first...and the muscles catch up....and that's where Grace is right now.  The muscle that crosses over the back of the knee is hurting.  She said the fact that it's both knees and not just one was a good sign....and the fact that she's quite active during the day and nighttime is when the pain is worst was another.  They gave us some excersises to do each night before bedtime to stretch the muscle in hopes that it helps her get through the night without waking up in pain.  We're sratching the ibuprofen..I dont want to medicate unless absolutely necessary.

However, they did find a anomality in the xray...unrelated to her knees...but something that may or may not cause some lower back pain later on in life.  She has sacralization of "LR" ....anyway...where the right side of her spine is attached to her sacrum.  At least we learned something of it and I don't have to worry about worse things anymore. 

She said there was no reason she could see to look into her problem any further...nothing that warranted poking of needles or that sort.....but that if in 1-2 years she's still having problems we can start looking at other possibilities.

Thanks again to all of you!
Angela

Offline luckygrandma

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Hi Anj, Then there really is such a thing as growing pains. I've just never heard of them affecting a child so much. Maybe that is why when I was growing up that is what they kept telling my parents, because the symptoms are very similiar to what I went through.

If the Doctors are right then Grace should gradually outgrow them. At  least you are on the right track and don't feel so helpless and have an idea what to do for her.  I'm really quite relieved for you, and it is so great that that Leg Perthes has been ruled out as that is no fun.  I would very much like to keep in touch and know how she is doing, if you want to let me know by e-mail that would be fine.    :-*
« Last Edit: November 05, 2006, 01:16:42 AM by luckygrandma »

Offline luckygrandma

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Hi anj, How is your daughter doing.

Offline shootingpain

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I feel for your family. My daughter started with those exact pains at about 2years old. She would wake screaming in pain. Nothing would give total releif, but there was some by rubbing icy hot on top, and around entire area. Many Dr. test. I was told, and noew tend to belief it was growing pains. My daughter was 10 lbs. 12 oz. at birth always stayed at about 165 growthpercentile. She was ona 5 year growth spirt. from about 2 on she was more mature than any children in her grade, and several ahead. Her pains semm to lesson about 7or8, but didn't stop until about 10 sorry. I hear there are good natural remedies now.

Offline Jomsep

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Hi Angela, not sure if you’ll see this since this thread was so long ago. But my 5 year old daughter is having a similar situation to your daughter.  I would like to know what stretches you were doing with her and if the stretches helped. Thanks, Jodi















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