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Avatar universal

5 yr old w leg pain and lots of pain meds, pos XRays etc (no diagnosis)

I've tried to shorten this...

Our 5 yr old son complained of night leg pains for months - waking in tears.  When this seemed to be excessive (lasted for 4+ months, increasing frequency), we saw docs who diagnosed as "growing pains".  

March 2011: negative XRay

By Aug 2011 he wasn't playing normally during the day because "his leg hurt" and on the bad days, he limped.  There was a "hot spot" midway down the inside of his tibia.  - he jumped if we poked it.  

Sept 2011: Xray was positive:  he had periosteal reaction and "something" visible in the bone.
Nov: more periosteal reaction seen in XRay, suspected Osteoid Osteoma
Dec: CT and bonescan were negative for O. Osteoma (no bone growth seen)

Our ortho showed his tests to other docs and radiologists.  Some thought it was possibly an old fracture.  
By Dec, our son was in constant pain.  We used Naprosyn (supplemented with Tylenol) to manage it day and night.
After a regular (and fairly high) dose of Naprosyn, the periosteal reaction went away.  

He was put in a lower leg cast for 4 weeks (at 2 weeks, repeated XRay with no change).  The pain frequency decreased significantly and we were back down to the occasional Over-the-counter meds.  The intensity was still quite high at times but only every few days.

The cast has been off for a week and a half.  He now walks with his toe pointed outward.  When he's having a rough day, it's pointed almost 90 degrees outward or he just hops around.   We use 10% Diclofenac gel and heat as our first choice to manage the pain.  He seems to be in constant discomfort again..ranging from mild to severe.

He is an otherwise healthy, active little boy.  His height:weight is normal and he is generally on the small end of both scales.

Any possible diagnosis?  I understand that any nasty bone tumors have been ruled out by the bonescan & CT.  Is there a possible soft tissue cause (doc mentioned this possibility in an early appointment but hasn't really re-visited it since)?  Can soft-tissue sarcomas be ruled out by the tests so far?

We assume that it is not likely to have been a fracture or it would've healed with 4 weeks in a cast.  Also, there was no acute injury or date that we could say this started..  Like any little boy, he's had many minor incidences but nothing notable.

Any help appreciated.  We are waiting on an MRI (in May).  I don't want to go back to the constant meds!

5 Responses
Avatar universal
Any thoughts on what this could be?  He's having a rough day again today..hopping around the house.  Any suggestions are welcome?  Is this familiar to anyone?
1711789 tn?1361308007
Hi there!

Well, it would be difficult for me to give a precise opinion without a detailed clinical evaluation. From what I gather from your description, there as a peri-osteal reaction observed in the primary images, while further images ruled out an osteoid sarcoma. Since the CT and the bone scans have not revealed much (as I understand after evaluation by several radiologists/ orthopedicians), this is unlikely to be a serious primary bone issue. Soft tissue abnormalities and bone marrow issues could also lead to periosteal reaction and these may not be as clear on the CT and may require an MRI. I guess the reaction has gradually settled over the months. With the primary tests I would have suggested conservative management with rest, anti-inflammatory medications/ pain killers as well. At this stage I would suggest reviewing the MRI images as well with the CT/ PET/ bone scans. If anything specific is found it would be managed accordingly, while empirical conservative management may be continued meanwhile.
Hope this is helpful.

Take care!
Avatar universal
Thank you for your response Dr. Kaul!  

I know it is difficult without the clinical exam, but in your opinion, would the possible "soft tissue abnormalities or bone marrow issues" be harmless enough or should we try to get the MRI sooner than 3 months from now.

For pain reasons alone, I am tempted to get the MRI moved because his pain is nearly constant again.  It is quite difficult to manage this with "rest" because he is a very typical 5 yr old boy.  He rarely stops - he just compensates with hops or limps.   He is other leg is also sore at times from the extra work it's doing.  We are hoping to see a pain clinic within a couple of weeks.

Anyway, my bigger concern:  is it possible this is some type of cancerous soft tissue issue that we should not be waiting 3 months for MRI. (If we travel, we can get the MRI sooner).

Thanks again.
1711789 tn?1361308007
Hi again!

I do not see a a huge benefit in getting the MRI scheduled earlier. I understand how one feel when its ones child involved. It it was something gross, it would have been picked up by the CT/ basic blood tests. If you can get the MRI scheduled earlier without any extra expense or liability, it might be an option worth considering; otherwise a couple of months wait should not be harmful.

Take care!
Avatar universal

He hasn't had blood work...perhaps we should request that.  Our doc was so confident that it was going to be an Osteoid Osteoma that he didn't request blood work.  

(When we saw pain improvement with the cast on, it was as though he stopped looking for a diagnosis.  )

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