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Author Topic: 5 yr old daughter w/chronic knee pain... do not know the cause. Need answers!  (Read 13926 times)

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!!

hustlegritdrive
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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
7/2006-Fulkerson-Maquet TTT,Partial medial and lateral meniscectomy,Tibial osteotomy proximal bone graft,Chondroplasty,Debridement
2/2007- Hardware Removal

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 Pediatricianand 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

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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!!

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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. 

 















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